# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 11



## Skybreeze

*New Home Ladies
    *​


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## Saffa77

bookmarking


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## berry55

bookmarking


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## Cozy

me too


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## 3babies

Ratsy  I will try.

Your NK assay 50:1 are very high, below 15 is good although Dr. Beer prefers these under 10

25:1 are slightly high & should be half of the preferred above. Dr. Beer prefers these to be below 5

12.5:1 again are slightly high & should be roughly half of the preferred above. Dr Beer prefers these below 3

CD3 - look good & are within range

CD19 - look good also

CD56 - seem very high

CD19+CD5 again seem very high & you may need IVIG ?

B-cells are under 30% so LIT could help bring these no's up ?

TNFa are within range so looks like no humira is needed.

2babies x


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## agate

Ratsy:

50: 1      20.4              limit 10  - 4 (high - probably going to be recommended steroids and IVIg/ILs)

25:1        11.2                      5-30

12.5:1      7.2                      3-20

lgG conc ( 2,5 50.1            18.9  (in a test tube, IVIG seems to suppress your NKa a bit)
lgG        (12.25 25.1)        13.7
lgG        (6.25 50.1)          12.7
lgG        (6.25 25.1)          14.7

%CD3                              48.8
%CD19                              2.2
%CD56                              46.0
% of CD19 -cellsCD5+          40.9 (high B cells associated with auto-antibodies - might have antiprogesterone, antiestrogen antibodies - might need extra progesterone and maybe estrogen and probably IVIG)


LEUKOCYTE ANTIBODY DETECTION


FLOWCYTOMETRY              - NEGATIVE 

(T-cells ) lgM+                          1.0
(Tcells )  lgG+                            2.7
(Bcells)  lgM +                          11.3
(Bcells)lgG+                                29.1 (not too bad, but you want this to be over 30 and ideally over 50 - you will probably want to think about LIT)

DQ ALPHA ( dp ) 0301,0505 = (3.1, 4.1)
              (me)  0201,0303 = (2.1, 3.1)

So, statistically 25% of your embryos made with your DP will be the same allele number as you.  Those embryos are more likely to be treated with hostility by your body and more likely to result in an implantation surge of TNFa and NKa - you might want to think about SET instead of DET (to avoid an unmatched embryo being attacked at the same time as a matched one is put back) but its a tricky decision - depends a lot on your personal views and whether you are likely to be have freezable quality embryos to be able to do a FET later after a SET.  Other than that, LIT might help a bit with this, and you would probably want to have ILs or IVIG drips during stims and then monitor what your NKa does in early pg to see if you need more drips.


TH1:INTRACELLULAR CYTOKINE RATIOS 

TNF-IL -10 (CD3+CD4)                  12.9                LIMITS -13.2 - 30.6  (low - good - this says you wouldn't need humira but then you might want to have the uNK biopsy to check if you need it for other reasons)
TFN-gIL10  (CD3+CD4)                  5.3                            5.8  -  20.5 

NK ASSAY W / INTRAPALID /NKT

50; 1 w / Intrapalid                        17.0  (ILs also bring your NKa down a bit in the test tube)
25; 1w  /intrapalid                          5.9
CD3+CD56+NKT CELLS% 

TB test negative (so you could have humira without worrying about latent TB if you need it.

Hidden C  test negative


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## ratsy

Thanks 2 babies , agate  

Ive had the unk biopsy and i have high unk cells thats why i did the TB test because DR G  said il most prob need humira 

agate - I never get any to freeze but my clinic want to go to blast this time so dont know what to do 

Would i need donor or paternal LIT do you think i need LIT 

So wil i have ivig and intrapalids during stimm  ?? and exta support does that mean gestrone and pessaries ?? 

I dont know much about estrogen how does that work ?? 

Thanks 

R xx


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## agate

ratsy said:


> Thanks 2 babies , agate
> 
> Ive had the unk biopsy and i have high unk cells thats why i did the TB test because DR G said il most prob need humira
> 
> agate - I never get any to freeze but my clinic want to go to blast this time so dont know what to do
> 
> Would i need donor or paternal LIT do you think i need LIT
> 
> So wil i have ivig and intrapalids during stimm ?? and exta support does that mean gestrone and pessaries ??
> 
> I dont know much about estrogen how does that work ??
> 
> Thanks
> 
> R xx


see what Dr G says about estrogen - ask if he thinks you need it - maybe check what thickness of lining you normally manage to get during stimms - its normally progynova pills which you can swallow or insert like a pessary. progesterone is probably 100mg gestone shots, but maybe pessaries as well. he will probably take into account whether you normally bleed/spot before end of 2ww as well.

you will have to see what Dr G says about the drips - but my guess is he will say 1 of each for you.

re donor v paternal LIT - its not completely obvious because you have 1 match - but studies show that paternal works best for most people, so if it was me I'd go for paternal.


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## Cath34

Ells- thats fantastic news!!! well done you.


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## Ourturn

marking


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## berry55

hi girls,

I'm have such a bad cough and cold, so bad that i keep coughing up blood and having nose bleeds. I'm not sure if its all because of the humira. My chest hurts a little too.... do u think its ok if i take any sort of medication? I'm a bit scared too take anything 2 be honest. I have had 4 shots of humira (last 1 was about 2 weeks ago and my 2nd LIT was tuesday. (i think i caught this cold/cough traveling bk from athens) Thanks for any help


And my AF has still not showed up!! 
xxxx


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## DND

Hi girls. I friend told me about your site. Today I received the results of my samples from dr Gorgy. Could somebody help me to understand them please? 
Here is the results:

DQ Alpha (HE) 0201, 0303 
DQ Alpha (ME) _I am still waiting for the result _

MTHFR Mutation Positive homozygous

TNF-a:IL-10(CD3+CD4+) 21.4 Ref: 13.2-30.6
IFN-g:IL-10(CD3+CD4+) 7.2 Ref: 5.8-20.5

NK assay w/Intralipid

50:1 w/Intrapelid 1.5 mg/ml 9.5
25:1 w/Intrapelid 1.5 mg/ml 2.3

NK assay (% killed) panel

50:1 12.8 Ref: 10-40
25:1 7.0 Ref: 5-30
12,5:1 4.8 Ref: 3-20

IgG conc 12.5 50:1 11.8
IgG conc 12.5 25:1 9.2
IgG conc 6.25 50:1 17.0
IgG conc 6.25 25:1 11.1

% CD3 92.8* Ref: 60-85
% CD19 1.0* Ref: 2-12 _(what means with low CD19?)_ 
% CD56 3.2 Ref: 2-12
% of CD19+ cells, CD5+ 20.0* Ref: 5-10

Leukocyte Antibody Detection (LAD)

Flowcytometry Negative
(T-cells) IgM+ 1.9 Ref: minst 30
(T-cells) IgG+ 1.4 Ref: minst 30
(B-cells) IgM+ 18.8 Ref: minst 30
(B-cells) IgG+ 37.9 Ref: minst 30


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## Clarebaby

Just bookmarking.


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## ratsy

Agate 

Normally my lining really thick they always comment at clinic ,but about 2 days before otd i start to get brown spotting 

Do you know of anyone with similar results to mine with high nk get a bfp bit worried now as it seems really high 

R xx


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## agate

DND: I'll give you my guesses about what Dr G will say...

DQ Alpha (HE) 0201, 0303 
DQ Alpha (ME) _I am still waiting for the result _ - you need both results to make any conclusions

MTHFR Mutation Positive homozygous - you will probably need high dose folic acid + vit B6 and B12 and also clexane shots

TNF-a:IL-10(CD3+CD4+) 21.4 Ref: 13.2-30.6 (your TNFa is not high)
IFN-g:IL-10(CD3+CD4+) 7.2 Ref: 5.8-20.5

NK assay w/Intralipid

50:1 w/Intrapelid 1.5 mg/ml 9.5 (intralipid brings your NKa down in a test tube)
25:1 w/Intrapelid 1.5 mg/ml 2.3

NK assay (% killed) panel

50:1 12.8 Ref: 10-40 (your NKa is not high)
25:1 7.0 Ref: 5-30
12,5:1 4.8 Ref: 3-20

IgG conc 12.5 50:1 11.8 (IVIG also brings your NKa down a bit in a test tube)
IgG conc 12.5 25:1 9.2
IgG conc 6.25 50:1 17.0
IgG conc 6.25 25:1 11.1

% CD3 92.8* Ref: 60-85 (pan T cells are high - no specific concerns but you might need to think about having some IVIG)
% CD19 1.0* Ref: 2-12 _(what means with low CD19?)_  - don't worry about that one
% CD56 3.2 Ref: 2-12
% of CD19+ cells, CD5+ 20.0* Ref: 5-10 (B cells associated with autoimmune antibodies are elevated - might need extra progesterone and maybe estrogen, probably will be recommended to have IVIG)

Leukocyte Antibody Detection (LAD)

Flowcytometry Negative
(T-cells) IgM+ 1.9 Ref: minst 30
(T-cells) IgG+ 1.4 Ref: minst 30
(B-cells) IgM+ 18.8 Ref: minst 30
(B-cells) IgG+ 37.9 Ref: minst 30 (not that bad - want this to be over 30 and ideally over 50 - you might be suggested to think about having LIT but its not as important for you as for some other ladies)

Berry: what is it you want to take - cough medicine? paracetamol? As long as you avoid anything with antihistamines in it (some cold & flu night meds might have them in to help you sleep but most won't) and steroids, I don't think anything is going to interfere with your LIT too much. You had TB screening before humira didn't you? If your cough gets really bad, you will probably need to see your GP just in case because of being on the humira. I don't like the sound of you coughing up blood... maybe you should see your GP?

Ratsy: we've seen much higher NKa than that on here. You could try looking for Omni, Cozy, Choice4, Pinpin, Cath34 old posts and see what their 50:1s were. Sounds like you might not need estrogen, but see what Dr G says - I think he will probably want you on more progesterone than you have used before whether its gestone on its own or with pessaries.


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## deegirl

Tinks - lovely to hear from you.  Thanks for that information regarding humira.  I spoke to Dr G today and expressed my concerns.  He said that the LIT often brings the cytokines down anyway so he's going to retest them at the same time as the LAD retest.  He's also going to do an endometrial biopsy....So scared   I know that you got it done, did you take any painkillers beforehand??  All the best for your LAD retest on Tuesday, are you going to TDL to get the bloods taken or are you just posting the bloods?  I'm sure that they'll be sky high and that there'll be no more LIT for you!  

Ells - I'm sure you're on cloud nine...enjoy it!   

To everyone - have a lovely weekend....sun please shine!  

Dee x


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## DND

Thank you so much Agata. So it is not so bad as I worried? Well, bad enough but

I understand that the most important are B-cells IgG+ but what about those others 
(T-cells) IgM+ =1.9,  (T-cells) IgG+ =1.4, (B-cells) IgM+=18.8?


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## berry55

agate- thanks for the info. I was gonna take paracetomal... but i'm a little scared. I just hate putting so much medication into my body... its already got loads in it. The coughing up the blood part prob sounds a lot worse than it actually was... it was just a little... this its cos i have the bad chesty cough and sore throat. Yes i had the TB test done and it was fine. You know what i'm like, i'm just a panicer lol  I would say the thing thats upsetting me most is that my af is still not here.... 6 days late is very late for me! just dont get it! xxxx


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## Cozy

Ratsy,

re your Nk levels, I see yours are 20.4 mine were 25.1 and the rest of my CD levels all appear to be higher than yours too. There is no reason why, with the right treatment, you couldnt have a successful pregnancy.

When I did my 1st NK retest my 50.1 had gone down to 12.0

There are quite a few of us who have had high numbers and still managed to get pregnant, some higher than mine. Think positive and dont give up hope.

Cozy


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## victoria99

Hello everyone,

My goodness so many of you seem to be experts at these immune tests!!   

I just recieved my results on Wednesday when I was having a consult with Dr. G.  Unfortunately, even though they were supposedly sent in the mail the week before I never received them and so did not have anything to prepare with.  Dr. G gives so much info - I know I missed a tonne!  What I did understand is that before I do DE I have to get 2 LIT treatments, test and then maybe another.  Take humira (just got my TB test so will see about that), clexane, prednisolone and gestone.  Also, at one point he mentioned that my results show that I don't respond to IVIG and seemed to say that we could get it tested again...

Could anyone please help me to understand my results?

DQ Alpha (DH) 0201, 0301    
DQ Alpha (Me) 0505, 0601      

MTHFR Mutation        Positive heterozygous

TNF-a:IL-10(CD3+CD4+)        33.4
IFN-g:IL-10(CD3+CD4+)        23.3

ANA  Positive 1:10

Cardiolipin Ab IgG	7.2
Cardiolipin Ab IgM	11.8

NK assay (% killed) panel

50:1            14.8
25:1            11.4
12.5:1          6.9

IgG conc 12.5 50:1        15.9
IgG conc 12.5 25:1        12.0
IgG conc 6.25 50:1        15.1
IgG conc 6.25 25:1        12.1

% CD3            81.4
% CD19            6.9
% CD56            9.9
% of CD19+ cells, CD5+        18.8

Leukocyte Antibody Detection (LAD)

Flowcytometry        Negative
(T-cells) IgM+        1.6
(T-cells) IgG+        1.0
(B-cells) IgM+        13.8
(B-cells) IgG+        16.3

Thanks so very much!
Calgary


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## agate

DND said:


> Thank you so much Agata. So it is not so bad as I worried? Well, bad enough but
> 
> I understand that the most important are B-cells IgG+ but what about those others
> (T-cells) IgM+ =1.9, (T-cells) IgG+ =1.4, (B-cells) IgM+=18.8?


The test takes a sample of white cells from your DP and then adds a sample of serum from your blood which contains antibodies. You can think of antibodies as being little 'tag's which B cells make to help other cells recognise foreign proteins. When the body encounters a new foreign protein, some of the B cell population are primed to make antibodies to it, so that next time the protein is encountered there will be circulating antibodies in the blood ready to attach to the protein and 'tag' its identity (as for example, hostile or benign). In the test, B cells and T cells from your DP are used as examples of cells which carry your DP's DNA. Your serum is mixed with his cells, and then after incubating for a bit, the sample is analysed to see what % of the T and B cells have been 'marked' by your antibodies. You want as big a percentage as possible because your want your body to be good at recognising your DH's DNA, because he will be providing half the DNA for your embryo - and you want your body to be able to recognise it as 'friendly' and not 'altered self' (like a cancer or a damaged cell).

IgG and IgM are two different classes of antibodies that specialise in marking pathogens (potentially dangerous proteins e.g., on the surface of bacteria or parts of viruses). IgG is the main one and IgM is one that tends to deal with the early response to a new pathogen before the body learns to deal with the pathogen better and IgG takes over.

So basically you have 4 numbers because the test looks at 2 classes of antibodies and whether they have tagged 2 classes of white cells. Dr B was of the opinion that the B cell IgG number was the most important - I presume this was partly from his experience in treating patients and I GUESS it reflects the fact that IgG antibodies are probably more important in maintaining a longer term response and I GUESS B cells are a better 'stand in' for embryo cells than T cells are, but I don't know.

Berry: any chance you could be pg?


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## ratsy

Thanks agate / cozy  

Cozy - what did you have altogether to lower your nk and have you had loads of drugs since BFP to keep it down hope you dont mind me asking 

R xx


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## agate

Calgary: 


DQ Alpha (DH) 0201, 0301     (2.1, 3.1)
DQ Alpha (Me) 0505, 0601      (4.1, 4.3) - pretty unusual numbers... no matches.. good!

MTHFR Mutation        Positive heterozygous - one of the inherited types of thrombophilia (more than half the UK population have one of these) not as bad as homozygous - probably need clexane and you need to be on at least 400mcg folic acid (e.g, in pregnacare)

TNF-a:IL-10(CD3+CD4+)        33.4 (TNFalpha a bit high.... so humira shots - probably 2 shots 2 weeks apart then wait 3 weeks and retest to check - don't time them to be in the same week as LIT - some ladies prefer to do their LIT first and then there humira but it does drag things out longer)
IFN-g:IL-10(CD3+CD4+)         23.3

ANA  Positive 1:10 (this is an indicator that you are more likely than the general population to have some autoimmune condition e.g.., lupus, rheumatoid arthritis - but you still may not have one).

Cardiolipin Ab IgG	7.2  (don't know what scale is used for these - but if you are above the 'normal' level - it would mean you have some acquired thrombophilia (sticky blood) so Dr G would be prescribing clexane to you).
Cardiolipin Ab IgM	11.8

NK assay (% killed) panel

50:1            14.8  (good - just under the cut off level of 15% for NK killing power)
25:1            11.4
12.5:1           6.9

IgG conc 12.5 50:1        15.9  (in the test tube, IVIG doesn't seem to help reduce your NK killing power - but it may still help with other issues or it may behave differently in your body than in the tube)
IgG conc 12.5 25:1        12.0
IgG conc 6.25 50:1        15.1
IgG conc 6.25 25:1        12.1

% CD3            81.4 - only a teeny bit high... probably not an issue
% CD19            6.9
% CD56            9.9
% of CD19+ cells, CD5+        18.8 - a bit high - probably use gestone (maybe progynova?) and maybe IVIG

Leukocyte Antibody Detection (LAD)

Flowcytometry        Negative
(T-cells) IgM+        1.6
(T-cells) IgG+        1.0
(B-cells) IgM+        13.8
(B-cells) IgG+        16.3 (you'd really like this to be over 30 and ideally over 50 - so you'd be thinking about having LIT - given you have no matches, paternal would probably be recommended to you, rather than 3rd party donor as it is supposed to increase pg success rates for MOST ladies more than donor)


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## victoria99

Agate - you are truly amazing!   

I just showed my DH how you went through and figured out all of my results providing explanations and likely treatments.  

Thank you so very very much!!!    
Calgary xxx


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## ells

Just book marking ladies, shattered after my IVIG with Dr G today   .  Thank you all again for your messages   .

Ells


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## ells

Diane hunni your inbox is full.  

ells


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## Zeka

Hello my lufflies, I hope you are all doing ok!
Just bookmarking
Zeka x


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## ells

Morning ladies,

I meant to let you know yesterday but forgot   Dr G is away for a week from 10th April.

Hope everyone has a good day,

Ells


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## agate

thanks for letting us know, Ells - have to think about when I will speak to him about NK retest then.


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## Saffa77

Ladies


Got my NK assay retests and hope you can help me

50:1 - 10.0
21:1 - 8.0
%CD3 -  58.6% (limits 60-85%)  mine are a bit low is this ok??
%CD19 - 12.5% (limits 2 - 12%) mine are .5 high is this ok?
%CD56 - 31.0% (limits 2-12%) mine are really high then what does this mean?
%D19+cells CD5+ - 16.8% (limits 5 - 10) again even higher then before I started my IVF am on 100mg gestone everyday and have tested progesterone levels and they seem fine - dont understand how this all works?

How do I go about correcting all these results now?  Is it more ILs?  dont understand now.  They are worse then before.

Sx


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## agate

Saffa77 said:


> Ladies
> 
> Got my NK assay retests and hope you can help me
> 
> 50:1 - 10.0
> 21:1 - 8.0
> %CD3 - 58.6% (limits 60-85%) mine are a bit low is this ok??
> %CD19 - 12.5% (limits 2 - 12%) mine are .5 high is this ok?
> %CD56 - 31.0% (limits 2-12%) mine are really high then what does this mean?
> %D19+cells CD5+ - 16.8% (limits 5 - 10) again even higher then before I started my IVF am on 100mg gestone everyday and have tested progesterone levels and they seem fine - dont understand how this all works?
> 
> How do I go about correcting all these results now? Is it more ILs? dont understand now. They are worse then before.
> 
> Sx


CD 19+5+ are B cells associated with autoantibodies including, as you understand, sometimes, anti-progesterone antibodies. Taking extra progesterone wouldn't bring them down - it would just deal with one of the possible consequence of having high levels of them. i.e., if your CD19+5+ is high, you are more likely to need to make sure you are getting enough prog - but taking the prog doesn't remove the problem cells.

CD56 are NK cells - so you can see the number of these cells has gone up a lot, but fortunately they seem to not be switched on for killing at the moment because your NKa is still ok.

CD19 are all B cells (including the 19+5+ ones) - yours could be up because your 19+5+ are up.

I don't THINK you need to worry about the CD3 - pan T cells.

It does seem to be pretty normal for results to go up and down wildly in early pg - there is a lot going on in the body - which is why you are having your NK monitored so that any problems can be dealt with - Dr B said that you normally have about 4 weeks to deal with an NK problem before the baby's growth starts to affected. There is NOTHING TERRIBLE in these results.

My GUESS is that Dr G will say - stay on the prog as planned, have another ILs about 1 month after the last one and retest after 7-10 days and take it from there. Take comfort from the fact that if you are having an anti-prog antibody issue, you are already dealing with it because you are on all that extra gestone etc.

hope this helps


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## Saffa77

Hi Agate

Thank you so much for making it ALL SO much clearer!!! Yes the last time I had a IL was 2 Fridays ago so as long as I have another one within the next 2 weeks i should be fine.  I have phoned Dr G and have a telecon with him on MOnday as have other questions to ask him too etc.  Thank you again!!

Sx


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## victoria99

Hello Agate,

I've been reading through a bunch of the various immune threads, in particular the LIT thread, and have some questions concerning Humira.  It seems that for some people it actually makes their levels spike rather than go down.  Dr. Gorgy did say that he’d like me to take it but I’m wondering if I could just do LIT, which I read on the LIT thread, can sometimes reduce TNF values.  I’m also concerned taking it as I tend to get a lot of chest colds which get quite severe as I have asthma.  Given that you mentioned that I’m only a little high on the TNF-a:IL-10(CD3+CD4+)  =  33.4 would you think that I could just focus on the LIT? Dr. Gorgy mentioned that I should do the Humira cycle 30 days before my DE but it seems like some people take Humira even when pregnant.  If that’s the case and my TNF-a levels are still poor at ET could start it at that point?  

Also, as you mentioned that it did not look as if IVIG worked for me, at least in a test tube, would intralipids help for my high NK cells?  I’ve read elsewhere that IL is starting to replace IVIG in some cases but am wondering if that test means that IL would possibly not work for me either?!  If yes, what would I do to reduce NK cells?

Sorry if this seems a bit confusing there’s just so much information to wade through and I’m trying to balance (as much as possible) the cost vs speed vs effectiveness (and health).

I'm also crossing my fingers that Dr. G gets LIT up and running in April it would be so much easier than going to Athens or Cairo.  Also he had said that the cost at his clinic would be around £700 a session so it'd likely be much cheaper - nevermind so much more convenient - than having DH and I both fly out for LIT.

Thanks so much!
Calgary 
ps. As an aside, Dr. G. said that he had a patient who had no response to IVF stimms (like me) who then got pregnant after doing his immunes work - I can't recall if he said it was after taking Humira or doing a full lot of immune stuff - the meeting is a blur now.  Has anyone heard of this and whether or not it's applicable to hard luck cases like my own with POF?


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## agate

calgary99 said:


> Hello Agate,
> 
> I've been reading through a bunch of the various immune threads, in particular the LIT thread, and have some questions concerning Humira. It seems that for some people it actually makes their levels spike rather than go down. Dr. Gorgy did say that he'd like me to take it but I'm wondering if I could just do LIT, which I read on the LIT thread, can sometimes reduce TNF values. I'm also concerned taking it as I tend to get a lot of chest colds which get quite severe as I have asthma. Given that you mentioned that I'm only a little high on the TNF-a:IL-10(CD3+CD4+) = 33.4 would you think that I could just focus on the LIT? Dr. Gorgy mentioned that I should do the Humira cycle 30 days before my DE but it seems like some people take Humira even when pregnant. If that's the case and my TNF-a levels are still poor at ET could start it at that point?
> 
> Also, as you mentioned that it did not look as if IVIG worked for me, at least in a test tube, would intralipids help for my high NK cells? I've read elsewhere that IL is starting to replace IVIG in some cases but am wondering if that test means that IL would possibly not work for me either?! If yes, what would I do to reduce NK cells?
> 
> Sorry if this seems a bit confusing there's just so much information to wade through and I'm trying to balance (as much as possible) the cost vs speed vs effectiveness (and health).
> 
> I'm also crossing my fingers that Dr. G gets LIT up and running in April it would be so much easier than going to Athens or Cairo. Also he had said that the cost at his clinic would be around £700 a session so it'd likely be much cheaper - nevermind so much more convenient - than having DH and I both fly out for LIT.
> 
> Thanks so much!
> Calgary
> ps. As an aside, Dr. G. said that he had a patient who had no response to IVF stimms (like me) who then got pregnant after doing his immunes work - I can't recall if he said it was after taking Humira or doing a full lot of immune stuff - the meeting is a blur now. Has anyone heard of this and whether or not it's applicable to hard luck cases like my own with POF?


Calgary: we've been chatting about this sort of thing on the LIT thread this morning - maybe have another look now? The idea that having immune Tx can improve ovarian response to stimms as well as egg quality is something mentioned quite a bit in Dr B's book. I THINK there are 2 things going on 
a) if you have high TNFa levels it is likely to mean that when antral follicles develop in the ovaries, the fluid inside is likely to have higher TNFa levels which Dr B believed was more likely to make the eggs aneuploid (genetically incapable of making a healthy baby) - he believed (and so does Dr G, Dr Coulam etc) that taking humira to reduce TNFa (and logically, doing anything else that reduces TNFa e.g., ILs, IVIG or LIT and possibly steroids to a lesser extent), is likely to improve egg quality, but it may take a few cycles to rid the ovaries of the most TNFa damaged eggs before you move on to 'fresher' undamaged ones... that said though, most of Dr B's patients did get pregnant quickly so clearly it isn't necessary for all ladies to treat high TNFa and then wait before they try an IVF cycle
b) some immune problems are associated with autoantibodies (which sometimes is hinted at by having high levels of CD19+5+ B cells) - which can include anti-ovarian or anti-hormonal antibodies - high levels of these could reduce ovarian response to stimms

Without trying Tx to bring down autoimmune activity and TNFa, I don't know how you can tell whether its really POF or whether its more of a reversible situation.

I don't have personal experience with humira - but you could try the humira thread for other ladies' experiences? I do know that it is taken by some pretty poorly or elderly non TTC patients for autoimmune conditions e.g., Rheumatoid athritis and Crohn's... and the only thing that really seems to concern clinicians is activating latent TB. Coulam's study on how much humira did improve pg success rates in her patients with high TNFa did seem quite convincing though (although the patient group was small) - and she showed the biggest improvements were for patients whose TNFa wasn't extremely high before humira, but still came down. Which is something that made me want to use humira (couldn't though because of the TB test).

On the other hand some immune specialist gynaes like Dr S at Sirm don't use humira for TNFa - they use steroids plus ILs only.

I wasn't aware that many patients use humira when pg - I've only really heard about it being used as a pre-treatment to bring your TNFa down before you start your cycle. I would be very worried about taking humira during pg/stimms unless there was some critical health reason - because its safety in pg has not been established.

I can't see the intralipids assay in your results - its a test tube test like the IVIG one - I thought Dr G always did that one with the initial NK assay? Is it hiding in your results somewhere?

I would GUESS that Dr G might want you to have some IVIG as well as ILs because of the elevated CD19+5+ - but I'm not sure what he said to you?

I think if he is saying to use humira and not IVIG and ILs - this is probably on the basis that humira is pretty potent stuff and as your NKa is not high, he is not too worried about your NKa - but TNFa is connected to NKa because a lot of the TNFa in the body is produced by NK cells. So his strategy for you seems to be just to hammer the TNFa down before you start. LIT is supposed to be helpful for TNFa but I believe its a bit less potent for that and it takes longer to start working on your TNFa than humira.

If you don't want to take humira, I'm sure you could discuss ILs (maybe combined with IVIG) as an alternative - Dr G is always ready to listen to your preferences - especially if your missing ILs assay shows some effect on your NKa. Dr S at SIRM puts a lot of faith in ILs to deal with TNFa as well as NKa - his success rates suggest he might be right - but there aren't (m)any scientifica studies yet - so Dr G prefers to go with what he knows works and mainly stick to the Beer protocol (which favours humira and IVIG) - although he increasingly adds in ILs or uses them for patients who specifically want ILs rather than humira or IVIG.

At the end of the day though, it will have to be your own personal decision - and you aren't going to know which combination of meds would help you the most unless you try it. A lot of us work on the assumption that we will take everything offered because we want to do everything possible to succeed first time, but some ladies will want to try a more stepwise approach and start with 'lower key' Tx to see if that works before trying everything.

From my own perspective I see 
gestone<steroids&clexane<ILs<IVIG<paternal LIT<humira <donor LIT - in the order of which immune Tx are the most extreme.

Some ladies might see LIT as more extreme than humira - but we all perceive risk differently - they are both at the more extreme end of Tx.

When pricing LIT - don't forget to take into account the costs of blood tests for your DH (unless you can get your GP to do them) - Dr A requires his patients to have all their tests done fresh (less than 30 days old) each time they have LIT. Dr T will let you reuse any tests you've had done in the last few years (as long as you haven't changed partners or something) - so I don't know if you had to have, say 3 LITs with Dr G and couldn't get tests done by your GP whether you would have to have new blood tests done for each LIT or not.

maybe: 
a) try and research a bit more about humira - on here, and maybe on yahoo reproductive immunology group - try the help files there (embrel is a similar drug to humira, more common in the US than here)
b) maybe have another discussion with Dr G about trying ILs first instead of humira if that's what you decide to do.

I think you are right that the decision might be more obvious if you your TNFa was even higher -my TNFa was only a bit high like yours and because I couldn't have humira I had IVIG and ILs combined with quite a bit of LIT - and its worked so far (but its possible that the humira might have worked out cheaper if it had meant that I didn't need as much IVIG - but there is no way to know if that's true). One thing that makes your situation different to mine is that I also had slightly high NKa - so it was more likely that NKa was the source of my TNFa problem - and so its seems likely that hammering my NKa with ILs/IVIG probably did deal with my TNFa (I don't know because I never retested TNFa) - with your results its a bit less obvious because your NKa is ok?

hope this helps - although I am conscious I'm giving you maybe more questions than answers?


----------



## Hope297

HI Girls do you mind me asking what doseage of clexane Dr G prescribes pre and post transfer? I did cycle with him a couple of times but forgot - is it 20mg pre transfer and 40mg post?

Many thanks

Hope


----------



## ells

Hi Hope,

I was on 20 upto Ec and then 40 after.  Hope that helps.

Ells


----------



## victoria99

Hey Hope,

Dr. G had prescribed 20 before and 40 after just as Ells mentioned when I was going through my OEIVF.

Thank you Agate,

I wish I had been more prepared and organized for my meeting with Dr. Gorgy.  I have to admit that I got a bit muddled with what he was suggesting and saying – possibly exacerbated by a couple of phone calls and other interruptions while we met.  As someone else mentioned, he does assume a high level of understanding.  In this consult the main message I got from him was that I needed to expect about 2 mos of treatment using LIT and Humira before I could look at starting DE.  I can’t recall if he said I would have to do IL or IVIG once I starting DE (though when I met him days before I tried OEIVF he did have me do IL as I didn’t want to delay the cycle) – I’ll have to clarify that when I see him next.  Also, I don’t think I had an IL assay as I can’t see anything else listed that has a similar format to the IVIG assay – which I didn’t understand at all until you pointed it out.  Most of my tests were through ARGC before I moved to Dr G who then asked for the DQ, LAD and MTHFR tests.

Can I ask why you didn’t do follow-up tests for TNFa?  I recall somewhere reading that it’s maybe not worthwhile redoing tests after certain treatments as the tests are as expensive as doing the full treatment.  Is this one of those cases?  I did not have a breakdown of the test costs so am uncertain how much it was for each. 

Re Humira into pregnancy – I saw this note from Super9 on a Humira thread: I'm with Mr G and he normally prescribes Humira for high TNF- alpha, until a fetal HB is seen- so one could be on humira for approximately 2-3 months. However, although Mr G wanted me to continue with Humira despite my reluctance due to medical reasons and also as my TNF-alpha had not changed at all after 4 injections of Humira combined with intralipids, I discussed this with him and felt IVIG would be better and explained that the money I would be wasting on more  humira could be better spent on IVIG. In the end he agreed. So sometimes you need to be persistent and explain your concerns.

I think my biggest issue right now is to try and plan for LIT.  Thanks for the reminder about the blood test costs.  Dr. G had said that even though the Athens group accepts bloods from a while ago the tests themselves are comprehensive and about £480.  He said that the UK tests are much simpler and cheaper though he did not mention a cost (If anyone knows – please fill me in .)  He also said, as you mentioned that they need to be done within 30days and he was trying to get confirmation from the blood team he works with that they could do a one day turnaround on their tests so that I could do the tests Wed and then do the LIT on Thursday and then 4 weeks later on day 29 (before the 30-day validity is up) do the 2nd LIT.  I have to call him next week to see if he’s gotten their agreement on this otherwise, as you suggested it could be more expensive.  

Thanks again for your help!
Nathalie


----------



## Hope297

thanks girls!


----------



## agate

calgary99 said:


> Hey Hope,
> 
> Dr. G had prescribed 20 before and 40 after just as Ells mentioned when I was going through my OEIVF.
> 
> Thank you Agate,
> 
> I wish I had been more prepared and organized for my meeting with Dr. Gorgy. I have to admit that I got a bit muddled with what he was suggesting and saying - possibly exacerbated by a couple of phone calls and other interruptions while we met. As someone else mentioned, he does assume a high level of understanding. In this consult the main message I got from him was that I needed to expect about 2 mos of treatment using LIT and Humira before I could look at starting DE. I can't recall if he said I would have to do IL or IVIG once I starting DE (though when I met him days before I tried OEIVF he did have me do IL as I didn't want to delay the cycle) - I'll have to clarify that when I see him next. Also, I don't think I had an IL assay as I can't see anything else listed that has a similar format to the IVIG assay - which I didn't understand at all until you pointed it out. Most of my tests were through ARGC before I moved to Dr G who then asked for the DQ, LAD and MTHFR tests.
> 
> Can I ask why you didn't do follow-up tests for TNFa? I recall somewhere reading that it's maybe not worthwhile redoing tests after certain treatments as the tests are as expensive as doing the full treatment. Is this one of those cases? I did not have a breakdown of the test costs so am uncertain how much it was for each.
> 
> Re Humira into pregnancy - I saw this note from Super9 on a Humira thread: I'm with Mr G and he normally prescribes Humira for high TNF- alpha, until a fetal HB is seen- so one could be on humira for approximately 2-3 months. However, although Mr G wanted me to continue with Humira despite my reluctance due to medical reasons and also as my TNF-alpha had not changed at all after 4 injections of Humira combined with intralipids, I discussed this with him and felt IVIG would be better and explained that the money I would be wasting on more humira could be better spent on IVIG. In the end he agreed. So sometimes you need to be persistent and explain your concerns.
> 
> I think my biggest issue right now is to try and plan for LIT. Thanks for the reminder about the blood test costs. Dr. G had said that even though the Athens group accepts bloods from a while ago the tests themselves are comprehensive and about £480. He said that the UK tests are much simpler and cheaper though he did not mention a cost (If anyone knows - please fill me in .) He also said, as you mentioned that they need to be done within 30days and he was trying to get confirmation from the blood team he works with that they could do a one day turnaround on their tests so that I could do the tests Wed and then do the LIT on Thursday and then 4 weeks later on day 29 (before the 30-day validity is up) do the 2nd LIT. I have to call him next week to see if he's gotten their agreement on this otherwise, as you suggested it could be more expensive.


Maybe then ARGC don't do the assay with ILs because they don't prescribe ILs so that's why it wasn't in your results?

The situation quoted by super9 is not how I understood the normal Tx with humira to be - maybe she has especially high levels or for some reason Dr G was proposing an unusual protocol for her or maybe she misunderstood - because my understanding was that Dr G stuck to the Beer protocol (you can see it on the yahoo reproductive immunology group in the files section). As I understand it, if your TNFa is only slightly elevated you would probably do 2 shots (1 packet) of humira 2 weeks apart, then wait 3 weeks and retest - and if all is ok, start your cycle. Some ladies with very high levels seem to have 4 shots or even 6 shots with retests after every 2 before they cycle - but I thought the humira Tx was usually completed before you cycle. Can you ask Cozy or someone else who has done their Tx inc humira recently?

I didn't do follow up tests for TNFa on the basis that, given my NKas have always been elevated and I would be having ILs/IVIG, if the TNFa was high, there wasn't really anything else that could be done for it - as my understanding is, that if you are pg, you don't want to be taking humira (and in any case, my TB test meant that I couldn't have taken it in advance of the cycle - in actual fact when I did see an immunologist he said I could take it if I wanted to - just would have to be monitored if I got any TB symptoms but by then I was pg).

My experience with Dr G is that, so long as you have a proper appt slot (face to face or telephone), he does listen and is perfectly happy to go with your preferences - if you phone without a full appt, then sometimes I don't think he pays quite so much care to listen to you and check all your notes because he is trying to squeeze you in between his booked patients.

Its possible your GP might do some/all of the blood tests for LIT - depending how accommodating they are - even if they will only do some of them it will save you some money. Otherwise, Dr G will probably use TDL - I THINK it would have to be a 2 day turnaround on bloods because some of the virology tests (HTLV, CMV etc) do take 2 days even at TDL - and TDL are a lot faster than most other labs - some of the private hospitals seem to take about a week and with the NHS it can be quite a bit longer. If you do go to athens, you will probably have some of the tests you can use already from your OEIVF - e.g. Hep B, C and HIV. Maybe TDL will be able to do some sort of extra priority service to enable them to cut their virology test time in half or else maybe Dr G will have to do the 2 LITs more like 3 weeks apart instead of 4. But it sounds like if you needed a 3rd or 4th LIT with Dr G you'd be paying for the tests again in any case.

I can't say if Dr G will require a lot less tests than Dr T because I haven't seen any lists of tests for Dr G yet. The list of tests for Dr T is on pg 110 of the LIT thread (I think). If I had to guess, I would say that Dr G will probably skip Hep A and the liver function tests (because it isn't obvious how those tests actually protect you in any way for having LIT - so I am not clear why Dr T needs them - the liver function tests were only added recently and on all our repeat trips, Dr T has never asked us to add new tests), but I am sure Dr G would want HIV, HTLV, Hep B and C and probably CMV and EBV as well. Those are the key virology tests that make sure your DH hasn't got an infection that would seriously threaten your or the baby's health if you caught it (and Dr T also needs these) but they are also the more expensive ones of the set that Dr T asks for. I expect Dr G may be trying to negotiate a package price for the tests with TDL, but I don't know what it would be.

The only other small thing worth bearing in mind is that Dr T is an immunologist and does a lot of LIT whereas Dr G is a gynaecologist who is only just starting to do LIT. I'm not sure how smoothly things will go in the beginning, but I am sure it will be fine once its all set up and running, especially in Egypt, because maybe the 30 day restriction on blood test age wouldn't apply there - I assume its an HFEA requirement here.


----------



## vw22

Hi there, 

I have a quick question I wondered if you could please answer after a brief overview;

After another failed donor egg treatment I went to Dr Gorgy. As expected he wanted the full set of immunes done. He tried to put me off having the frosties I about to have put back until the blood test results are back but as we are committed to go ahead (and other personal reasons) I said I couldn't wait. Also this could be our last chance with DP sperm as the clinic is pushing for donor sperm too now.

SO making decisions as I went and without DH there to consult, I agreed to have the full on treatment as if all my tests had come back with bad news... 

I had IVIG there and then and started immediately with clexane and prednisolone. I was offered LIT but couldn't as I have intolerance to egg whites and soya bean which this is made of...

I still have no idea if I have done the right thing BUT basically this could be our last chance with my DP sperm so possibly our last chance with a genetic connection. 

If it doesn't work I will get the blood test results but probably stop all the drugs and we will have a rethink. We are getting married in May so will take some time to ourselves and make a new plan after 3 years of full on treatments. 

Question;
I have started these injections and tablets (clexane. prednisolone and IVIG) on day 5, is that too late or is it going to make an impact on my system before ET? 

And if I want to stop the drugs after a negative result, do I have to wean myself off them or can I just stop?

Many thanks for any basic advice.

Vx


----------



## 3babies

I also read on the immunology board that in some circumstances humira can be taken up until a fetal heart beat is heard.

I will fish out the exact section in a bit.


2babies x


----------



## agate

vw22 said:


> Question;
> I have started these injections and tablets (clexane. prednisolone and IVIG) on day 5, is that too late or is it going to make an impact on my system before ET?
> 
> And if I want to stop the drugs after a negative result, do I have to wean myself off them or can I just stop?


Day 5 sounds about right - you are wanting to them in your system for at least 7 days before ET - so that should work for you I THINK?

You can stop the clex without weaning off. You are supposed to wean yourself off pred if you are on it for more than 3 weeks.

2babies: I'm totally happy to be contradicted - I haven't had humira so I was just going on what other ladies seem to have done... although I have a strong feeling that Dr G told me that humira couldn't be taken in pg... but like you say, maybe there are circumstances when its ok as long its early in pg.


----------



## 3babies

Arh bless!

It's noted in the files under 'immune tx's what are they?'
Followed by immune tx protocols Sep 28/2009

*Preconception tx*

Under the very last paragraph of CD57+cells residing in the uterus

So in some cases yes it's required.

2babies x


----------



## agate

I guess it must be then. 
Its odd though because the Jan 2010 file in the same section mentions for enbrel that its continued until a fetal HB, but for humira it says its discontinued before pg and in the humira file in the humira section it says its discontinued before conception.  There's also a protocol for CD57 uNKs using IVIG and LIT without any humira in the Sep 2009 file, which suggests that if it isn't enough, then to move on to humira... so I guess it must depend on how severe the uNK problem is, but it seems that if its only for TNFa, humira is stopped before conception... so I guess its better not to have it in pg from a safety point of view, but in some cases there is nothing else that would be strong enough to deal with the uNKs to let a pg get established?

I am not sure about it, but I THINK that the few scientific trials that have been done on humira for fertility Tx have mainly used it preconception for TNFa rather than for uNKs.  I found a japanese case study where it was used preconception and did bring down uNKs though.

I'm sure there must be ladies on the humira thread that know a lot more about this than me.


----------



## vw22

Thanks Agate, that really helps.
Vx


----------



## niccad

Hi all - just bookmarking. 

Deegirl - the uterine biopsy was painful, but was worth did. For me it was bad as he had difficulty getting the right bit of equipment in. If he manages that quickly the process itself is over quickly. Good luck x

2nd humira shot for me this wednesday. My ankles are hurting after the first one ... anyone else had this? Ive convinced myself that any other side effect are purely psychosomatic  . The side effects in the pamphlet in the box are pretty bloody scary. I would recommend not reading them & just giving the sheet to DH! 

xx


----------



## deegirl

Niccad - thanks for that info.  Did you take strong painkillers beforehand? x


----------



## Julie-Anne

Hi,

Thinking of seeing Mr G for immune testing next month. Can anyone advise on approx cost of the testing for hubbie and I?

Thanks


----------



## Cozy

Julie Ane,

it depends on what tests you have done. I paid £1800, I would budget around £1400, i think thats the average of what people have paid, it may be a little more/less.

It is usually worth the money though.

Cozy


----------



## agate

Julie-Anne said:


> Hi,
> 
> Thinking of seeing Mr G for immune testing next month. Can anyone advise on approx cost of the testing for hubbie and I?
> 
> Thanks


Varies a lot depending on what tests you need/want and what you've already been able to get done through your GP.

Most ladies want NK assay, TH1:TH2 cytokine ratio, LAD, DQa and inherited thromobophilia - I think those are something around £1000 but I can't remember. 
If you can get your GP to do karyotyping that will save you paying Dr G for it.
Then there is a new test for 'hidden' chlamydia which you may want depending on your history and a uterine biopsy for uNK cells which most ladies put off until after they know whether the results of their TH1:TH2 - because if that's high, then humira will probably be recommended anyway so it may not be absolutely necessary to have the biopsy.
If you haven't had your tubes and womb checked with a lap or HSG or something, you may want a saline scan or even a hysteroscopy/laproscopy - but again, it depends on your medical history.
If you decide you need DNA fragmentation tests or other sperm tests, then those will be extra costs too.

Most ladies will try to get their level ones (tests for APLAs, rheumatoid arthritis etc) done at their GP so that they don't have to pay for these - but it does depend on how helpful the GP is - and to be honest if you get a lot of positives turning up on the chicago tests you will end up on similar medication for these anyway e.g., if your inherited thrombophilia level 2s come back positive you will end up on clexane, so the treatment wouldn't be any different if your APLAs had come back positive.

But basically, even if I could remember how much each test cost, it would vary a lot because it depends which tests you decide you need after talking to Dr G.


----------



## rosebud_05_99

HI there

Im having intralipids done for the first time with a prescription from dr gorgy but done in ireland, i forgot to ask him can you take antibiotics with intralipids, as i usually have to take antibiotics eg flagyl before ET. Has anyone else come across this issue.

thanks

rosebud


----------



## agate

Dr G prescribed antibiotics (doxycycline) to me for around ET and I also had ILs and IVIG from him in the run up to it.


----------



## ells

I was fine too Rosebud, I had AB at EC and had both IL and IVIg.

Elles


----------



## rosebud_05_99

Thanks for your replies, that is good to know, im heading for DE in czech rep , I started estrafem today and my af only started yesterday so im hoping that it stops soon so I have a good lining, im also on anti b's right now for a kidney infection and I also have the flu, . . heres hoping things get better for me. Also I ordered the intralipids from a chemist and a local dr is going to infuse them for me on the dates required. I believe it takes about 1hr, is this right?

rosebud


----------



## ells

Hi Rosebud, 

my IL's took 2 hours. I hope you feel better soon.

Ells


----------



## Chicky Licky

Just bookmarking!
x


----------



## Bling1975

Bookmarking and waving to DND


----------



## ells

Niccard,   how are you sweetie.  I had aches in my knees and shoulders after my humira shots, I was told that was a good sign as it showed it was working.  They aches lasted for about 3 days but by the time I did my 6th shot I think I ached for the next day and it was fine afterwards.  The list (very very loooooooong list) of side effects are pretty hairy but I looked at them and then put them away   .  Hope the achey ankle eases for you soon sweetie.

Ells


----------



## ratsy

Hi girls 

Ive had rest of my  results today  

Factor II mutation - negative 

Factor v Leiden - negative 

MTHFR - negative 

Girls does this mean i wont need clexane or will i still be taking it for  my other results 

Julie -Anne - I had my bloods tested with DR G and it came to £1,720 

Thanks girls 

R


----------



## agate

ratsy: not sure.  I can't see any reason to need clexane from your results, but I think Dr G does seem to give it to all his patients who have NK issues... so I think you might end up a low dose of it, but see what he says to you, I guess.


----------



## ratsy

Thanks agate 

your so helpful youve got stay on here after youve had your lil angel 

We wont know what to do without you  

R xx


----------



## DND

I have now obtained my DQ alpha
*DQ Alpha (ME) 0104/0105, 0501 (1.1, 4.1)*
DQ Alpha (HE) 0201, 0303 (2.1, 3.1)

I understand that Dq 0501 is bad but how bad is that in combination to my husband?

Agata would you please comment this?


----------



## agate

DND: I don't THINK you have any problems with those DQa. You have no matches with your DH so none of the embryos you would make with your eggs and his sperm could be an exact match for your DQa (an embryo gets 1 number from mum and 1 from dad).  Its when the embryo matches you exactly that the biggest problems arise - and with your numbers as a couple, that can't happen.

I wouldn't worry too much about having only a single 4.1 between the two of you.  I don't really believe in the theory that 4.1s can be a problem - simply because its such a common number in the UK - and if it was that much of a problem how would we all have survived to be born ourselves.  In any case, its having an embryo with a pair of 4.1s that is supposed to be a problem, not just having a single 4.1.  Statistically, only half the embryos you make with your DH would have any 4.1s at all.


----------



## Louiseb26

Hiya Ladies

How is everyone? Cant believe we are already on another page.

Agate- I agree with everyone else...what would we do without you   I remember when i first came on here...i did not have a clue about anything to do with the immune side of things.You were so patient with me, explaining things over and over till i understood.So you have to stay on here  

I was wondering about the whole antihistamines and LIT discussion.How long after LIT can you take these? And would taking painkillers affect LIT or Humira results.

Lou xx


----------



## agate

I can't remember whether Dr T said you had to wait 1 or 2 weeks in between LIT and antihistamines.  Maybe someone else can?

I can't see how taking painkillers would affect humira but if it was me I think I'd probably skip them for at least a day or so around LIT (assuming you are talking about something like paracetamol), unless you really had needed them. All I'm thinking about is that finding that giving paracetamol to babies straight after their vaccinations makes the vaccinations slightly less effective, but I'm probably being overcautious.

Don't know why you ladies seem to think I'm going anywhere! Where else would I get flattered so much!


----------



## Bling1975

He told me one week for everything (antihistamines, cortisone, antibiotics etc) but as I only have 2 weeks between I will not take anything until one week after my second LIT to be on the safe side as it does build up a bit over time.


----------



## DND

Agate-thank you, you are such a pearl


----------



## DND

Waving to Bling1975


----------



## Louiseb26

I remember taking an antihistamine about a week after the second LIT...do you think that could of had an effect of the lit not going up.Or am i being an  

How long does Humira stay in the systerm...is it 6 weeks.

Agate i think your known world wide   My dad was blown away when i showed him your posts.

Lou xx


----------



## agate

Louiseb26 said:


> I remember taking an antihistamine about a week after the second LIT...do you think that could of had an effect of the lit not going up.Or am i being an
> 
> How long does Humira stay in the systerm...is it 6 weeks.


I'm sure if Dr T said you only need to wait a week and you waited a week, it must be fine. He is the expert.

I don't know the answer to your humira question... can the ladies on the humira thread help, or maybe Cozy will know? All I can think of is that I think people who take it for RA/other autoimmune conditions can take it 2 or 3 times a month depending on how severe their symptoms are which suggests it can't last that long - but presumably their TNFa levels must be extremely bad to need that much of it?... and I gather that most immune tx ladies would aim to start cycle within about 3-4 weeks of their last shot.


----------



## mag108

ladies somehow I lost the thread! Well found out today the soonest appt for the next hysteroscopy on the Nhs is july 2nd. Guess you don't get bumped up the list for being messed about. Strongly thinking of going private. Cannot bear the thought of having to wait that long. Plus by that point if u add on  recovery it surely negates the lit. 

Any top tips on private? Costs, where etc. I am considering serum, but any ideas how much private costs in the uk.?


----------



## Newday

I had ET yesterday morning I have woken up with a slightly sore throat this morning. Is teh the dreaded immune response dou you think?
dawn


----------



## agate

Mag: I'm hoping Diane or someone else will have some ideas for you.  Someone told me in the UK that costs for most procedures were pretty standardised across the board because of agreements with the big insurance companies, but I don't know if that's true... if it was though, then I guess you may as well see whoever is the top expert if he costs the same as everybody else?  It sounds from the boards as though a lot of people do go to athens though via Penny, I think.

Dawn: no way to know.  hopefully not. but  if you can stay home and rest and do something calming, drink lots of fluids (some green tea, some pomegranate juice?) that's probably the best you can do to keep your TNFa etc down. Unless you want to speak to Dr G about having another ILs or something... I don't know whether there would be any extra benefit having it now- but it could just be a cold, given the time of year - hopefully that's all it is.


----------



## Newday

Thanks agate it's gone off now I'VE HAD A DRINK!
Dawn


----------



## Swinny

Hiya ladies

DeeGirl - Re the Intrauterine Biopsy Mag108 and I had this with Dr G in January and we both had some Codeine beforehand. Just a little tip too, whilst we had our legs akimbo Dr G asked us if we'd like our cervix measurements whilst he was down there (ooerr!!!) and we both said yes as we thought that it was just standard and part of the test...Oh No, we were both charged £120 for that and we don't even know what it would help?? Think it would only be beneficial to Dr G if you were having your VF with him.

Mag108 - I think Cozy had a private Hysteroscopy last year in Manchester. Why don't you PM her for the details??

Cozy - Was that right?? I seem to remember that you were going to have it with Dr Edi-Osagie??

Agate - Quick question my lovely. I am praying to god that my hidden C test comes back negative but if positive I am going to need antibiotics and as Anna said following on from that a surgical hysteroscopy to remove any hidden C in the scar tissue in the uterus. With this in mind do you think i'd be better to start again with my LIT after 3 months or just continue with my plans for 2nd LIT on the 20th April?? I am kind of thinking it'd be better to carry on now and if I have to deal with hidden C, maybe go for a 3rd LIT once all sorted??

Hope you are all ok. I am just getting ready to send my test tube full of yukky stuff off to Penny at Serum in Athens as my AF turned up a few days early (with a vengeance yesterday). I'll let you know how i get on. In response to somebody (Mag108??) re the cost for hidden C test with Dr G, i was charged £150 and Mag108 £200 so if anybody is doing the test make sure you are charged correctly 

I thought it might be beneficial for me to post the links that Penny emailed to me regarding the research on Hidden C, so here they are:-
Thank you for your e-mail and all your fertility info. 
You may collect the sample in any sterile cup, such as the urine cups for example. You will need a few drops of period bleeding plus 3-4 ml water for injection for not to dry.

I'm sending you some articles, but I fear you will be lost in them!  
http://www.wipo.int/pctdb/en/wo.jsp?IA=GR2002000031&DISPLAY=STATUS this one is the patented method that they use in Locus lab. 
http://humrep.oxfordjournals.org/cgi/content/full/17/8/1938
http://jmm.sgmjournals.org/cgi/reprint/50/10/902.pdf
http://www.medsci.org/v04p0223.htm

Bye for now
Sarah xxx

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## agate

Sarah

I think you probably know that I am going to say that i don't know.  It seems like it will depend on whether your C test comes back + and how long it will really take to shift the bug and deal with any scar tissue if necessary.  I think... if it was me I'd probably carry on with the LIT, if only to feel like I was going forwards and moving in the right direction so that as soon as everything else was sorted I'd be nearer to getting on with things - but I am a sort of 'fertility guided missile' as for me having a baby is/was more important than anything else - so I'd be unlikely to want to put anything off if I could be moving forwards -other people may have a more 'balanced' viewpoint?  Maybe I'd have the 2nd LIT and then put off getting the LAD until you know where you stand with the C test stuff? So that you know more about whether you need a booster just before you Tx?

I had a quick squint at those links - these bits are news to me/slightly interesting?

1) it sounds as though the menstrual blood test can be used to see if lymphocyte populations (including NKs) in the uterus are normal for that time of the month as well as pcr detection (a sensitive method where they look for chlamydia DNA rather than trying to 'grow' bugs from the sample in the lab) of C and mycoplasma (another bug).
2) one of the papers where there was a pcr detection using surgical tissue samples (not menstrual blood) found the following stats for how common C infection was in (very small, unrepresentative?) test groups:56% in ectopic pg patients, 71% in patients with blocked tubes, 20% in patients who didn't have ectopic or blocked tubes - these numbers are staggeringly high - so it makes me wonder how common a + result is on the menstrual blood test compared to doing surgical tissue sampling, and particularly for patients who know they are negative on the normal swab/urine test (the study didn't look at whether the same patients had positive swab/urine tests for C).  The paper mentions that women in the test group were older (average about 40), but on another study looking at much younger patients, the prevalence of C detection in urine was about 10%.  Anyway, I'm kind of thinking that for patients like us, you'd have to assume lower prevalence of C in tissue because we'd be in a category where obvious C infections had been weeded out... iyswim?
3) one of the studies is a test tube study where one of the interesting points seems to be that C reduces progesterone production - so maybe its another reason to make sure we get lot of progesterone supplementation, although I don't know whether extra prog would help much if there was a significant C infection.

Dawn: that's good - keep drinking then!


----------



## Swinny

Agate - Thanks honey   Yep I think you're right. I should just plough on and maybe delay the re-test if my Hidden C is +. Makes sense doesn't it xx


----------



## DND

I was wondering about my DQ again. Can somebody explain for my why I have a dubbel number? *DQ Alpha (ME) 0104/0105, 0501 (1.1, 4.1)*
Agate I suppose that you understand this?

Dr Gorgy has noticed the first one like 1.1 but I wonder if I maybe have some mutation here?


----------



## agate

DND: 0104 and 0105 (and 0101) are all on allele 1.1 - so they are all classed as 0101.

I THINK the 0104/0105 means that the lab don't distinguish between 0104 and 0105.  0105 has also been distinguished recently as being different from 0104 and its a very rare group - so the odds are you are 0104, but I guess they don't resolve between the two - it might matter for say, organ donation, I don't know about that, but for fertility all the 1.1 allele DQas are assumed to be so similar as to be identical, I THINK.

I don't think there is any kind of mutation or anything to be worried about.


----------



## MissyMinx

Hello ladies, sorry am in such a rush, but just wanted to pop in and say hello and huge   to all.

Have just paid the £200 to have the latent C test sample bottles sent to me - am pleased as I just want to cover every single base with this tx.

Got such a busy day but will try to pop in later to do personals.  Hope you're all ok though and sending you all loads of   and   and  

Em.x


----------



## niccad

Hi everyone... Dawn - good luck x

What would you do?? I’m about to take my second dose of humira… I then have to retest in 3 weeks time (ARGC insist on 3 weeks) The results take a few days to come back. Question – I will be on day 1 of my cycle tomorrow so will have the re-test on day 21. Day 21 is really the day I want to start downregging. ARGC are keen for me to wait for the results before starting – so delay a month. Obviously a month is only a month but I feel that:
1.	the humira will have gone out of my system quite a bit
2.	I’ve had LIT and the effects are wearing off. I had it in October & when tested last month I was still ok, but this will be going down quickly.
3.	my AMH is pretty low so I’m obviously thinking it’s plummeting each month… 

Should I start sniffing regardless & just hope my cytokines are ok or should I delay    

Nic xx


----------



## Bling1975

Niccad, I would start if I were you. Can't you cancel the cycle if your results are bad even if you have used the spray for a few days as long as you haven't started on the injections? I know of quite a few ladies in Sweden that used the spray for a bit longer as well.


----------



## agate

I agree with Bling - can't see why you couldn't stop sniffing after a few days if the TNFa results aren't favourable - (if day 21 is a monday, then the results should be back by saturday) and I don't think your TNFa was that high?  so isn't there every reason to expect it to be down enough?


----------



## Newday

Niccad thanks I can't advise day 1 and counting
dawn


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## DND

Agate I must say. I am so impressed with your knowledge and your good will to understand everyone’s situations. Thank you.


----------



## agate

DND - I deny absolutely all accusations of knowledge!   

I'm good at figuring things out sometimes though, using the bits of knowledge that I do have and then hunting down the missing bits when I need it - my memory is rubbish -  so long as there isn't too much pressure to perform - I go to pieces under pressure now, I think I probably always will.

but generally this place is good at the moment for my dodgy self esteem... because I can try and help on 'clever' days and stay in bed on 'fed up, fuzzy, knackered and miserable days' or have a nap first and then see if I have enough focus to have a go at someone's questions later.  I like puzzles so long as i can do them! and I can't deny that it makes me feel better to try and be useful - but I do feel I have to try and remind people that I am only an amateur - not a doctor, so I can only try to give my best guesses and say what I would do from knowing the bits I know... if you see what I mean... anyway its nice to be appreciated.


----------



## vw22

Hi there, this board is so marvellous for information. Agate, your interest on behalf of everyone is tireless...

Now on prednisolone (25mg) and clexane (40mg) after IVIg.

Quick questions;
1. No side affects at all (or feeling ill) after 7 days...am I just lucky or am I doing something wrong with the injections etc?!
2. The clinic here (spain) doesn't think my projestrone levels are low each time I have a negative result. I supplement in a natural cycle with 2 x 200mg utrogestan a day in the 2ww. One result said 15 (sorry I don't know what measurement that is). Then two doctors outside the clinic have commented this is low. Given that my spanish clinic won't give me anything extra (I am about to transfer next week) should I just pop a few more pessaries for good luck? Or is that a bit mad?

Any advice?

Many thanks 
v


----------



## Saffa77

You won't get any symptoms from the meds the only thing is bruising with clexane a d hunger with pred but much later on. The drugs aren't meant to make you feel like anything. Re the progesterone I would call dr Gorgy leave a message with his rwceptinist to ask Gorgy for gestone which is progesterone in an oil base which you jab into bum muscle

otherwise yes I would up your bullets to maybe 4 am and 4 pm ask Gorgy he will put u right


----------



## agate

vw22 said:


> Now on prednisolone (25mg) and clexane (40mg) after IVIg.
> 
> Quick questions;
> 1. No side affects at all (or feeling ill) after 7 days...am I just lucky or am I doing something wrong with the injections etc?!
> 2. The clinic here (spain) doesn't think my projestrone levels are low each time I have a negative result. I supplement in a natural cycle with 2 x 200mg utrogestan a day in the 2ww. One result said 15 (sorry I don't know what measurement that is). Then two doctors outside the clinic have commented this is low. Given that my spanish clinic won't give me anything extra (I am about to transfer next week) should I just pop a few more pessaries for good luck? Or is that a bit mad?


1) side effects on clexane apart from bruising are rare. On pred most ladies feel good - although sometimes have insomnia - you can feel a bit rubbish when you stop pred though.
2) you don't have your CD19+5+ results back so we don't know if you are likely to be an anti-progesterone antibody lady. I'm asssuming Dr G must think you have some sort of NK problem or he wouldn't have suggested IVIG, so I would GUESS you probably need more prog than the average lady, because immune issues ladies tend to need more prog because of CD19+5+ issues and also to try and get some extra anti-inflammatory help from prog. I've only used cyclogest pessaries rather than utrogestan -but with those 2 x 400mg is a pretty minimal dose (Dr G usually gives at least 100mg of gestone or 50mg gestone plus 2 x 400mg cyclogest -to his immune tx ladies - admittedly this is for IVF not DE - but I still THINK he'd expect to give higher doses of prog on DE/FET if there are NK issues). I don't know what units the 15 is in. From what I remember I think you'd want at least 20 ng/ml blood level prog which is about 60 nmol/l (if i've got the maths right!). So I can't say what Dr G would say... but I THINK he'd be happy to prescribe more prog to you... and I think if it was me I think I'd be asking for it. Can you ring him and ask and do you have enough pessaries in the meantime until you can get back to get a UK prescription from him or your GP (if they help you)?


----------



## Peanuts

Hi girls

Just a quickie from me, not posted here for a while, can just about keep up with the LIT board!  Have been thinking of you all and lurking when I can!

Ells - fab news on your BFP - congrats!  Hope it's sunk in and you're feeling ok  

Newday - congrats on being PUPO, good luck with your 2ww     And keep drinking!

Big hugs to everyone   
Dxx


----------



## vw22

Thanks I will take both of your advice and try and get hold of Dr Gorgy.

As I am not going back to the UK I will have to see what I can get here. 

But I have just found some cyclogest (16 x 400mg) that I was prescribed in my own egg IVF from Lister which is still in date, I might look back at my notes and see if I can get more of that as a back up. Do I remember rightly that they are bum bullets as opposed to the other way?!

Thanks again

V


----------



## agate

cyclogest can be used vaginally or rectally.


----------



## ells

Newday, just wanted to wish you lots of luck and sending you loads of                  , come on little embies       .

Hi to everyone else hope you are all well    .

Ells


----------



## Newday

Thanks Ells

not got vey PMA this is the last go I couldn't even face the journey again to Czech republic. So it's make or break. No sore throat it went off very quickly

Glad all is progressing well with you
Dawn


----------



## Louiseb26

Hiya Lovelys

Ells - Glad to see your getting on well.How you feeling? 

Dawn - Good luck Hun.Have everything crossed for you  

Agate - How you doing lovely? Are you still on bed rest.

Shellie - Hope its all going well for you today...let me know how it was.

I'm cycling with Dr G.I was wondering what ladies are cycling with him.I wanted to know does he write out a cycle plan for you,for all your drugs and when to take them.Or is this something that you do yourself when you visit him.

Big   to everyone

Lou xx


----------



## Toffee Girl

Hi All

Sorry, long time no post and all that - I hope everyone is doing OK here on this thread??

I have had a quick skim of the last few pages (no time to do all the masses i have missed Parts 8-10 at least  ), but I just wanted to say that I am another Dr G patient who has tested positive for the latent Chlamydia.  Thanks to Diane, I did the test straight after another BFN (my 8th) which was great as it gave me something positive to be doing!

I sent a sample to Athens (oh my god trying to get that Mooncup back out was the most traumatic thing I have undergone in a long time!) and then went straight out for a hysteroscopy as I had already shown Penny photos of my womb lining from a hysto last year at the Lister.  The lining looked strawberry coloured and they had treated me for an unspecific infection back then even though they could not find one on testing.  My first sample came back as a negative, but as I was already in Athens by that time, they did a re-test from the hysto there, and found a weak positive.  (Penny was convinced that there had to have been something there as the photos of my womb indicated the most severe infection she had seen.)  The interesting thing was that my womb had healed up into an entire mass of scar tissue over the last year, which they removed during the surgery.  It's no wonder my 3 cycles with Dr G this year were failures.

What's will be interesting to see is whether it does lead to my TNF-a coming down eventually.  This has stayed around the 53 mark no matter what Dr G has done (countless rounds of IVIg, humira, intrallipids, 4 LITs etc).  For those of you who have similar high levels that won't come down, this C test is well worth considering.

Louiseb26 - When you cycle with Dr G he does not give you any notes or plans whatsoever I am afraid.  It helps massively if you have cycled elsewhere before so you know what to ask about.  Just keep posting on here with any questions.  Or PM me.  The good thing is that you will end up speaking to him nearly every night on his mobile to get your drug dose confirmed, so there are lots of opportunities to ask questions.  

Love to all 

Toffee Girl xx


----------



## Julie-Anne

Hi Cozy & agate,

Thanks for the info. Had quite a bit done such as karyoyping, level one tests and a full recurrent miscarriage panel privately and at st marys. This was about 18 months ago so will take details with me. Gulp at the cost but guess its better to spend the money now than do another cycle ending in a chemical. Thanks again- much appreciated !!!


----------



## Ourturn

Just a quickie as I am feeling zonked from the GA from my hyesteroscopy. Consultant showed me pics and my uterus looks totally normal...there was no scar tissue! Don't understand as Penny was certain there would be scarring based on my C result. Will e-mail Penny and see what she thinks.

Any ideas?

Anna x


----------



## Newday

I've got like a stitch pain left hand side at back anything to worry about
Dawn


----------



## Louiseb26

Anna - glad the hyesteroscopy went well and it all looks clear.Can i ask whats the latest time up to EC you can have one of these done.How long is the recovery time?

Been trying to call Dr G all day.Just heard on the news that one of the main BT lines in the west end has come down...hence why the phone has been engaged all day.

Toffee Girl  - Thanks for you kinds words...i will keep telling myself that  

Lou xx


----------



## Ourturn

Lou - not sure about your ec question...but I think it would be best to have it well ahead of ec. Some ladies say it can delay af ie muck up your cycle. Re recovery...if they don't have to fix anything..pretty quick, just the 24 hours to get over the GA.


----------



## ells

Newday, hunni I had stitch type pain on and off, hopefully its your embies making themselves comfy         . My understanding is that unless you are in a lot of pain its nothing to worry about. 

Sobroody I hope Penny can give you some answers and that you are not sore and back to normal in the morning   .

Hi to everyone else hope you are all okay   .

Ells


----------



## mag108

oh and SKYBREEZE!      what amazing news, I am so so happy for you!
x


----------



## agate

sobroody1 said:


> Just a quickie as I am feeling zonked from the GA from my hyesteroscopy. Consultant showed me pics and my uterus looks totally normal...there was no scar tissue! Don't understand as Penny was certain there would be scarring based on my C result. Will e-mail Penny and see what she thinks.
> 
> Any ideas?
> 
> Anna x


the thing I thought was odd was when you said your blood C antibody test was neg (it was you who told me that was it... I'm not sure if I'm getting muddled up now, sorry)- those papers that swinny listed from penny (was it yesterday) again gave me the impression that if you've ever had C you'd have antibodies - is there any chance of a false positive on the 'hidden' C test?

Dawn: I don't think its likely to be anything significant - but if it doesn't go or gets worse perhaps you should ring your clinic?


----------



## Bling1975

I am already planning my retest as it can be a bit tricky in Sweden. And I just checked the ryanair site and it is cheaper for the both of us to fly to London than to send the samples. But my husband has important business meetings on both Monday and Tuesday of our test week. Is it to late on Wednesday?

Also, I had the hidden C test with Penny last Wednesday when we were in Athens, how and when will I get the result?


----------



## 3babies

Your results should be in now. Mine was ready within 24 hrs.
All the best   

2babies x


----------



## Ourturn

Blng - your test should be in now. Call today as they may shut down down for easter

Agate - Yes I tested negative for C antibodies. But one of the papers says

In subfertile women who have no chlamydia antibodies in serum, the presence of chlamydia in the genital tract cannot be excluded however. Since iatrogenic spread of chlamydia in subfertile women has severe consequences for the preservation of fertility, prophylactic antibiotics before uterine instrumentation should also be considered in subfertile women without chlamydia antibodies.

Here's the link 
http://humrep.oxfordjournals.org/cgi/content/full/17/3/525

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Bling1975

I got my result this morning (e-mailed Penny last night) and it was negative. I don't think I realised how nervous I was before I felt the huge relief once I opened it.

I really hope it works out well for everyone who got a positive, I assume that with the right treatment it will be ok in the end even if it takes some time. We are hoping to do a FET in early june before all swedish clinics close for the whole summer so I was a bit stressed about that.

Is anyone else going out for LIT this tuesday? We are leaving early saturday morning, I hope everything isn't closed for easter.


----------



## Swinny

Newday – Wishing you lots and lots of love and luck  

Bling - Yey!!!! That's brilliant news and I can feel your relief across the web. I am so anxious about this bl**dy test as I am convinced it's going to be +. Good luck with FET honey   

Ells – How are you today?? 

Peanuts    Hello sweetie. Yep know what you mean, I am posting on about 7 threads at the moment and my head is a bit fuzzy with all of the info that I need to take on board. It's such lovely support though and I've chatted online and obviously a week or so ago met so many of you lovely ladies. Hope you're ok after your drip, how you feeling??

Louise – good luck with your cycle  

ToffeeGirl   Lovely to see you posting again and I am so sorry to hear about your cycles recently. Thanks for posting that info re your hysteroscopy. I had one with Bupa in October 08 so I think I'll try and get the photo's and results and send them off to Penny to get her opinion. They were checking for adenomyosis at the time and it was nothing to do with the latent C, but at least I should get some idea if there was any scar tissue.

Julie-Anne   It's definitely the best approach to a cycle, as I've spent £17K on previous cycles all of which were doomed to failure due to my immune issues. I so wish I'd had all of the tests years ago before I had cycled. There's loads of info on here and both Cozy and Agate are amazing ladies with a wealth of info so you're in the right place xx

Anna    Glad to hear you're ok after hysto. Hopefully this is all good news and the antiB's will be all that's needed to rectify your situation??

2babies   hello matey how are you?? Can I ask you a quick question? It says on your profile info that you had 3 months worth of antiB's for latent C, was that consecutive, or did you have a month's worth and then wait 6 weeks to re-test and then another month's worth and so on?? 

Cozy    Are you around this week?

Mag108 

Love and massive hugs to all 

Sarah xxx


----------



## Chicky Licky

Bling - great news on your test results! Good luck with your cycle! 

Dawn - I've got everything crossed for you! Thinking of you hun.

Anna - glad your op went ok.

Shellie
xx


----------



## 3babies

Morning all, Swinny, we were never told to wait 6wks b4 testing or to avoid dairy which maybe why we tested positive every time. All i know is that we eventually got rid   thank god x Some seem to clear it with 1 or 2lots of antibiotics. Only a few of us have had to have 3 lots of meds  

Right off to my acupuncture session  


2babies x


----------



## DND

Hi

I have been confused and am wondering a lot.

We had a telephone consultation with Dr Gorgy yesterday and he said that I need LIT (for LAD and DQ alpha 0501), then progesterone (CD19+CD5+), Clexane (CD3+ and MTHFR), Folic acid, B12 and B6 (MTHFR) and prednisolon and IL (for all of above,I think). And if my biopsy shows high number of NK cells I would need Humera too. *Now to question: In which order to take all of those treatments and how long before IVF? *

We are not able to have an IVF until August  because our IVF clinic will close for summer already the June 1th. Dr Gorgy said that it is impossible to do treatment until the end of May. So he said we can start with LIT now and do IVF in August but how long LIT and IL last? In Dr Beer's book it says 6 months- Is that correct? Does it mean 6 months from the control after the second LIT?

What about IL? How do you take this one? Infusion? How long? How much? Together with LIT? Dr Gorgy said, I can do both of at his clinic.

We have another consultation with him after Easter.

I have been on prednisolon, progesterone and fragmin a couple of months. I wonder if I can skip prednisolon and if fragmin is similar to clexane?
I suppose that that you girls understand my confusion.
I would be grateful for your comments.


----------



## DND

Bling, wonderful. Good luck!


----------



## Bling1975

Thanks DND

The active substance is a bit different in Fragmin and Clexane so ask your doctor at home if they can switch. It is called klexane and you can find it on FASS. If not I am sure it will be fine with Fragmin.

I think you do IL quite close to the transfer but I am sure the other girls here knows that better than me.

I did my first LIT two weeks ago and I will just about be able to do a transfer in june, so if you start your treatments in about a month you will probably be fine. To do the LIT x 2 and then wait for results takes about 8-9 weeks. If you need Humira you can do it in the weeks that you don't do LIT and time it so you can do the retest at the same time.

I am only on baby aspirin (trombyl) at the moment, he said the others could wait until I cycle again. But I am not sure if you have a chance of conceiving naturally, then you might want to do things differently.


----------



## Cozy

DND,

Clexane is the same as Lovenox, it is Enoxoparin. Fragmin is Dalteparin. They are all low molecular weight heparin and basically do the same thing. I think it depends on where you live and what your clinic use.

Yes, Dr Gorgy does Intralipids and IVIg at his clinic. It takes approx 2 hrs for IL and 3 for IVIg.  I think cost is £325 for IL and £1350 for IVIg. I've not had mine done with him so not 100% sure, but its around that price. The infusions are usually given 7-14 days before ET and if you are having 2 before ET then they are usually 2-4 days apart.

For LIT. Dr G will be doing LIT at his clinic, though as I understand it, he hasnt yet got his licence, but he is hoping to start it very soon. If not, Dr Tsagaris in Athens is where most of us go to. You will probably need 2 lots of LIT 4 weeks apart then retest approx 3 weeks after to see if your LAD has risen sufficiently, if not, you may need a 3rd.

LIT is thought to stay in your body 6-9 months after your 2nd LIT

If you need to have Humira, you may be advised to have your 1st shot a week after your 1st LIT and the 2nd one 2 weeks after that.

Dr G will tell you what you need to take and when if you tell him when you want to do your IVF cycle.

Cozy


----------



## Saffa77

ladies 
quick one just had my IVIg and and have been told to take piriton or benadryl every 4-6 hours for 24 hours is this right?  

I thought it was just one benadryl before and one after drip.  

Sx


----------



## Ourturn

Saffa - that's what I had to do. But I'm pretty sure that pririton is the safest antihistamene to take when pregnant. 

Shellie - good luck with this cycle    

DND - you should sort out your lad levels with lit before cycling..the effects last for 6 months + Dr G will probbaly want you to have x2 IL's a few days apart leading up to embryo transfer. He'll send a prescription detailing when you needs to take what and when. 

Anna x


----------



## Saffa77

well i didnt have piriton and was told benadryl is ok well have already taken 2 so too late now if now safe


----------



## MissyMinx

Hi Ladies, hello and   to all.  Sorry for making such flying visits lately, work has been so busy I've not been on here as much as usual, but I love to pop in and see how you're all doing.  I have much more time next week so will do personals and catch up properly with you all  

Well, the bottle for my C Test has arrived from Dr G - can I please ask those who've had this test were charged for Dr G to send out the bottle?  It cost me £200 for the test bottle and form, and I've heard several different inconsistent charges...  

2Babies - am I supposed to avoid dairy before testing?!  How long for?  My AF is due tomorrow and I've just had a lunch of a cheese salad with a skinny latte - oops   

Right, back to work, but sending you all massive   and many  

Em.x


----------



## Ourturn

Em - Dr G told me it was £150 but I am waiting for the invoice so I can see how much I was charged (I paid for a consult and another retest at the same time)


----------



## Bling1975

Sorry to bug you all again, anyone who knows about retesting LAD and TNF-a at the lab next to Dr G on a wednesday? Is it ok?


----------



## Ourturn

Bling - any tests which need to go to chicago need to be done on a Monday or Tuesday to get to the lab in time


----------



## agate

I thought wednesday was sometimes ok - so long as you go there rather than post it on wed - I think they sometimes do have a fedex run on wed.  You'd need to phone TDL pathology and ask for referrrals dept and confirm with them.


----------



## 3babies

Evening all,

Bling1975 well done on testing negative for the dreaded C    something else crossed off the list.
Missy apparently dairy is to be avoided on the antibiotics to treat the Chlamydia. Fingers crossed your in the clear also  

Have a lovely easter ladies  


2babies x


----------



## Louiseb26

Em -I payed £200 for the C test as well.Can i ask why you have been told not to have any dairy?

Anna- Hope your doing ok? Thanks for the info.

Bling - I tested on a Wed...had to be in before 1pm.

Lou xx


----------



## Louiseb26

2Babies - Thanks for answering that qustion for me


----------



## Ourturn

Louise - when taking the antib's you need to avoid dairy as it can stop the doxycline from being fully effective.

Found out form another thread that the antib tx for C has been approved by Dr Toth in the states who is an expert in treating C.

Penny emailed me back saying that in most cases they find problems in the uterus as a result of C but not always. So I guess my infection has not caused any damage that way...though I suspect its the cause of my immune issues and miscarriages.   the antib's work first time. 

Anna x


----------



## ells

Evening ladies,

Just wanted to pop on and wish you all a very happy Easter and send you lots of luck   .

Ells


----------



## MissyMinx

Hi Ladies, I hope you're all doing ok tonight.  I've got a bit of a dilemma on and I would love to pick your brains for a second...  My AF has arrived today, and I'm due to take the sample for the latent C test tomorrow - I believe from the paperwork I received that Day 2 is the best day to take it.  The only problem is that it's good Friday tomorrow, so there's going to be no way for me to send the sample - possibly even till Tuesday if the post offices aren't open on Saturday.  My AF is always really light, and only really lasts for a day or two, so there's no way I can postpone taking the sample till next week as it'll have gone by Saturday by the latest.  It says in the paperwork to wrap the tube in tinfoil and keep in the fridge until it can be shipped - do you think Tuesday will be too late if I take the sample tomorrow?

I really don't want to postpone the test for another month, but I don't want the sample to be spoiled either - last time I had a uterine biopsy done I had to wait a month because the week I could've had it done cycle was was Christmas week - I swear the holidays are trying to tell me something 

Can anyone please advise me whether I need to postpone taking the sample, or if it'll be ok in the tube - in the fridge    

Em.x


----------



## ells

Em, dont know if this helps but the post office is open on Saturday hunni   .

Ells


----------



## Ourturn

Em - many post office are open until midday on Saturdays. My local one isn't but the one in town is. Ask for express signed for delivery..it only cost me around £6. Do your sample tomorrow and keep it in the fridge. My sample was 8 days old by the time it reached the lab and it was fine. 
Anna x


----------



## deegirl

Ells - hope you're well hun and that you're enjoying being pregnant!!  

To all - Happy Easter weekend!  

Dee x


----------



## MissyMinx

That's great, thanks for your advice Anna and Ells.  I'll find a Post Office that's open come what may.

Happy Easter to all of Gorgy's Angel Ladies.

Love,

Em.x


----------



## Zeka

Hello my lufflies, just popping on to wish you all a lovely easter break. We're off to Serbia this w/e but don't think the weather will be as nice as it was in Athens last week - was hoping for some sunshine again 
Enjoy!
Love Zeka x


----------



## Louiseb26

Hiya Lovelys 

Anna - Thanks again for answering my questions.Can i ask how long you have to take the antibiotics for? 

Em - Did you get your test from Dr G? 

Shellie - Wishing you all the luck in the world.Safe journey lovely...and keep that bag safe this time  

Happy Easter Ladies...enjoy the weekend  

Lou xx


----------



## Ourturn

Lou - dh and I have to take them for 25 days, wait 6 weeks then I retest. It can take up to x3 rounds to clear the infection, pray it works with one lot!


----------



## Cath34

Bling - I did a re test with the doc lab next to Gorgy on a weds afternoon!! he rang them and told them I was coming and for it go by courier (on the motorbike lol) that same day. I believe it was about 3.30 ish. It only happened like that as I had just had a bfn on my fresh cycle and went for a follow up with Dr G on a weds at 1pm and he said lets re test everything now to see the levels, so I guess exceptions can be made. Best of luck. x


----------



## Chicky Licky

Lou - thanks for wishing me well. My bag will be strapped to me and ain't coming of for nothing or no-one, or if it does, hubby's in charge of it!!! lol!  
If I left it on the tram again he really would kill me this time!! 

I did an equally daft thing though recently, that fortunately I realised last night. I'd got my Pregnyl for my trigger shot to make me ovulate, that I'll need to take on Sunday night at 9pm when we're in Brno. By chance DH and I were chatting last night about all the injections I've still got to have and he was reading the Pregnyl instructions. It was then that it dawned on me that I hadn't got a syringe or needles to do it, only the 2 bottles in the box. Arrrh!!! 
Good job I was going to the pharmacy today to pick up some more Cetrotide. They had both syringes and needles so I'm all sorted now and panic over! 

So you see, I'm not so organised sometimes!  

Let us know when you get the results of your C test back hun. Shouldn't be too long now. I'll have a laptop with me next week so I can stay in touch. 

Shellie
xx


----------



## tinks21

Hi everyone,

I hope you are all well and having a wonderful relaxing Easter Weekend, in spite of the weather!!

I just have a quick question ... Dr G has given me a prescription for Prednisolone, Clexane and Gestone.  Can anyone advise me of the best place to buy it?  I think a pharmacy near Dr G has been mentioned before but I can't remember the name and I have also read about ASDA having cheaping IVF drugs but am not sure if it includes these?  Does anybody know?  I am going to try my gp next week but don't hold out much hope really!

Thanks very much for your help.

Tinks


----------



## Bling1975

Cath - thank you. I will give Dr G a ring when I get back from athens and sort it out. I think I prefer to have the tests done in London instead of trying to send them from sweden.


----------



## Ourturn

Tinks - many of us have managed to get prednisone, gestone & celexane via our gps on prescription...give it a go. Failing that the cheapest places seem to be be Healthcare @ home, Central Homecare & Fazeleys

Anna x


----------



## Newday

It's been very quiet on here for a few days hasn't it. Well tested today 8 days past 5 day transfer annd BFN can't really see it chnaging so it looks like the end of the line for us.

My body has got progressively worst I used to get BFP's and then loose now I don't even get BFP's. Bit sad really as lining was good and even on ET day the doc said endometrium is very good. My cold came back have been hacking all week I always get illness of some discription.

So guess I now have to accept the inevitable and move on. Thanks for all the help and support I've had on here take care

Dawn


----------



## Bling1975

Dawn I am so sorry to hear that, but are you really sure it is a BFN? I tested negative on the same day as you are now and the next day it was a positive. Unfortunately I lost it at 10 weeks.


----------



## niccad

Dawn -        I really really pray that the result changes tomorrow. I've read that blasts sometimes take longer that 8 days to get an accurate result... Really hoping for you xxxxxxxxx


----------



## berry55

Dawn-   i'm so sorry. I will say a prayer for u that ur result changes. xxxx    xxx


----------



## ells

Dawn hunni, I am sorry that you are feeling so down and that you got a BFN but surely it is too early   .  I really   that your result changes hunni and that you get a nice surprise hunni     .

Ells


----------



## Zeka

Dawn, hoping the same for you and a second line develops over the next day or two. 
Hugs
Zeka x


----------



## MissyMinx

Dawn - hoping and   that the result changes tomorrow.  Sending you   and  

Hope all you ladies are ok.

Love,

Em.x


----------



## george01

Hi i hope you don't mind me jumping in here,but you all seem to have such knowledge. I've just had my re test results for my Tnf-alpha from Gorgy.My 1st result was 38,after 2 injections of Humira its come down slightly to 36.1. I understand this is still high,but i am due to start another cycle of icsi next week. Do any of you think it is still worth continuing or should i just delay treatment for a while.
I would really appreciate any thoughts you have as this is all new to me.


----------



## ells

Hi George,  

Welcome to the thread.  I am sure some of the other ladies will be on here soon to give you their opinions but if I were in your shoes I would see what Dr G suggests, personnally I would try and get my levels under 30.  Are you going to be having IL's or IVIG?  As I understand that both these can help in lowering TNFa .  My levels were similar to yours 39.4 but after 4 jabs they came down to 24, I had another 2 (6 in total) so hopefully they came down a little more too.  Good luck with what ever you decide to do.

Deegirl, are you having LIT this week?  If so hope it all goes well   , enjoy the nice warm weather and bring some back this way!!

Shellie, I think you are heading out for your tx this week?? Good luck hun, sending you lots of      .

Dawn,                 .

Agate, how are you doing hunni?

Lalaby, you must have a nice big bump now?  How are you little ones, moving around alot?

Saffa, hope you are well?

Niccard, have you started your tx yet?

Zeka, louise, Missyminx, Bling, berry, Anna, Cath,Cozy, TB, Peanuts, Pinpin, Bunagirl, Mag, Diane and everyone else hope you ladies are all well     .

AFM, we have our first scan on Friday, am     that we get to see a heart beat or two - Dr G's money is on twins   .  I had a dilema, Dr G wanted me to have IL's on heart beat scan so phoned [email protected] to sort out but I had to explain it may be too early as I will only just be 6 weeks (I hope not but its possible) so the lady suggested booking it for Saturday   - that isnt actually going to help!!!  So ended up just booking it in for Friday afternoon and   we see heartbeats!  Do you think I have done the right thing?  Haven't got too many symptoms, very tired, (.)(.) feel bigger and get waves of nausea but thats about it apart from my trousers and jeans being quite tight   .  I will let you know how we get on on Friday       !

Ells


----------



## berry55

hi girls,

i just got home from putting my prescription for immune drugs for predisolone, clexane, gestone and the needles. I ordered it all at Boots and to my shock its about £400!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! is that normal? or is that really expensive? xx


----------



## ells

Sounds quite normal to me Berry - sorry.  I had to get an emergency supply from our clinic and 3 vials of gestone cost be £25   !!!  2 weeks supply of 40 clexane cost me £70 at Tesco's.  It is bloomin expensive though!

Ells


----------



## berry55

Ells- OMG! I just didnt think that it was going to b that much- i thought £200 max! i know it is what it is cos i need it, but bloomin heck! If i do get a BFP when would i stop with all of these drugs? xx


----------



## niccad

Berry - I think that's a bit steep. How long is the supply for? x


----------



## ells

Berry, you should be able to get your GP to supply them once you get a BFP as its for keeping the pregnancy going - IYFSWIM.  The gestone and clexane are the expensive ones.  My GP said that the Gestone on the NHS are about £5 per vile not sure about the clexane though.  Did you try [email protected] I know they have come in a bit cheaper on these things and aparently Asda are price matching?

Ells


----------



## berry55

niccad- the predniosone is for 4 weeks. the clexane is 20mgx10 days then 40mgx14days. The gestone is 100mg for 14days + needles for this. I'm in total shock.... the lady said "its very expenisve" and i was like "ohh yeah i thought it would be, is it  less than £150!!" her eyes just almost popped out her head! lol i was like ohhh noo!!! lol


----------



## berry55

ells - i didnt try anywhere else... i just didnt think to b honest. I wish i had asked you girls b4 hand. ohh well, hopfully i get a BFP and i can  get them a bit cheaper   xxxx


----------



## ells

Positive thinking hunni         

Ells


----------



## Saffa77

Hi Berry

Yes i know what you mean!  I after my BFP managed to get the gestone and prednisolne on NHS didnt ask for the clexane yet as didnt want to push it but because clexane you normally take until 31 weeks pregnant I am going to ask my Gp next time.  The Gestone works out to about 4.50 - 5.00 on NHS and with prednisolne its cheap and didnt even pay for the prescription fee.  Even the doctor said that prescribing steroids is not a problem at all on NHS he was sceptical on the gestone but then gave me a prescription.  This last time I also ordered clexane from boots and was round aobut hte same price as you but only because [email protected] dont stock 60mg but [email protected] were about £30 cheaper.  So I would try them first before you order and pay for it at boots?  Just to compare prices.

Sx


----------



## berry55

Saffa- thanks for that info.   xxxx

How long during a pregancy would u be on all of these drugs? (pred, getsone, clexane and even crinone gel or pessarys) xxxx


----------



## ratsy

Hi berry 

Asda were really cheap aswel you should look into them WHEN you get your bfp 

R xx


----------



## Cath34

Hi all, Berry, I know its a shocker isnt it? I remember when Dr G prescribed me viagra for a a few weeks, my dh went to pick it up while I had my IVIG and he nearly fainted, it was a little over £250 just for that!!!!!! And it doesnt have the same effect on women either!!!! gutted!!

Quick question ladies. I am booked in to have IVIG this week (week 31) at my local NHS hosp (as I managed to wangle it for 3 infusions, and this would be my 3rd) But I have heard of many people stopping it at 28wks and so I rang Dr G today to see if he felt I needed to have it and he asked me when did I have it last and 28 weeks was my last infusion. Basically his take on it was we usually stop at 28wks due to cost to the patient and if the baby came from now on chances are it would be fine. He said its basically my call! I also dont need to re test my nks he said, so what do I do? Do I knock it on the head now or do I have 1 more infusion? I just dont want to have it if there's no real need if you see what I mean. All comments are much appreciated.


----------



## george01

Hi Ells thanks for your reply. I have Emailed Dr G,to see what he thinks i should do but haven't had a reply. When i last went to see him he suggested i have 2 Intralipid infusions once i start treatment but said he didn't think i needed IVIG. Its so hard knowing which is the best way to go,we have already delayed treatment 1 month so i could have the 2 humira injections.

Congratulations on you BFP!!!


----------



## Donkey

Hi girls

I hope you are all well and had a lovely easter.  I have started cycling and to be honest it's all a bit stressful    I am meant to have intralipids tomorrow with [email protected] who said they would ring by 6PM with a time but they haven't rung.  I'm really stressed, anyone else had this?

Ells huge congratulations  

Cath If it were me I think I would do it this one last time...

Lots of love
donkey xx


----------



## Saffa77

Berry

gestone and prednisolne to 12 weeks gestone max to 16 weeks clexane up to 31 weeks 

Sx


----------



## berry55

saffa- thanks for that info. What about the pessarys or the crinone gel? xx


----------



## Cath34

Thanks Donkey   I hope your stimming is going well and you are growing some lovely juicy follicles


----------



## Cozy

Berry,

the usual advice is that you start weaning off everything at 12 weeks. You may need to continue taking clexane though, but Dr G or the hospital will advice you what to do about that.

Cozy


----------



## agate

about drug prices: if you sign up to bnf.org (which is free to join), you can look up all meds that are available on prescription in the UK - it gives the NHS prices for all so you can see what price you ought to be able to buy at, if you find a helpful pharmacy. If you are visiting Dr G in London, then I found Rigcharm in Shadwell had good prices and stock. Wigmore pharmacy on Wimpole St was nearly double the price for clex and gest. I think Boots is a pretty expensive place. Nationally, Asda should be good for gestone/pessaries/crinone/stims because of their price pledge, but I'm not sure it would apply to clexane - but its always been pretty cheap when I've had private prescriptions from asda.

Berry: just to add to what Saffa said, once you are pg, most GPs will put your standard meds (not ILs or IVIG) on prescription which, when they write you an NHS certificate means you don't pay anything for them, not even the NHS prescription charge. You also get some dental Tx free if you need it during pg.

Cath - try this paper http://www.rialab.com/pdf/cair_ivig.pdf - but if its paid for, I think I'd definitely have it, just to be on the safe side. You don't want to be kicking yourself for not having it if something goes wobbly. But that's just my perspective.

Peanuts - I expect you've had your call by now. [email protected] often don't get their client allocation until the night before and then they have to juggle their appts to fit everyone in so sometimes they do call quite late... but so far they've always called in the end. My IVIG yesterday was a bit of a mare - the nurse was wrongly told it was ILs - so she didn't have the right paperwork with her and hadn't allowed enough time, and then she was all flustered about it and couldn't get the canula in, and then spilled a slosh of the liquid gold all over the floor (!) but it was done in the end. I've had that joint pain again, but it seems to be a bit better today so maybe the IVIG is helping already.

Ells: am sure its fine. better to get the ILs so that your LOs are protected, no point taking any chances.

Dawn: what Niccad said to you is right. there have been studies that show that blasts do take longer on average to show a bfp than day 3s. there is still hope and you are still testing a little early to be sure.

This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Newday

thanks for kind words I'm getting cramps today so guessing it's over
dawn


----------



## ells

Cath, I would do the last one if it were me. I am assuming in normal circumstance that if it was not a cost thing that Dr G would have recommended having it.

Dawn hun, please dont give up        still hoping for a nice surprise for you hunni.  

Agate, thank you   I am booked in for Friday pm after 2pm so that i have time to get back from the scan.  I figured it wouldnt do any harm to have it early.  

Donkey, good luck hun.  I had the same panic with [email protected] and must have rung them about 5 times but this time its been better, they have rung me back like they agreed.  I am now just waiting for the nurse to call with a time, like Agate said they normal phone the evening before as thats when they get their patient list and they can sort out their routes and timings etc.  Hope they have phoned you now hun.

Hope everyone else is well  

Ells


----------



## Cozy

hello ladies,

Cath, I would def have the IVIg if you are not paying for it. If I had to pay, I probably wouldnt at your stage. I know what you mean about the price of Viagra, I was on that, I couldnt believe how expensive it was.

Ells, good luck with the scan, I'm sure everything will look wonderful   

Donkey/Peanuts, I have never had any problems with HCAH or the nurses. They have always phoned me a few days before to arrange a time and then arrived on time.

Agate, I bet your are glad that lot of IVIg is done and dusted, what a pain in the  . I've been having joint pain too. Just got my latest NK retest back this morning, my NK's have gone up, so has my CD3, but nothing to worry about. My next IL is next week.

Hope everyone else is doing ok

Cozy


----------



## Newday

TMi coming up it is brown with little string like bits but not very much not on liner and only when I wipe. Is day 9 past blasts too late for implantation bleed?
Dawn


----------



## Saffa77

Dawn - that is what i get now for 3 weeks and have a BFP!  so dosent necessarily mean af is on its way when is your OTD? Hang in there....

S


----------



## Newday

14 days would be 11th Monday
Dawn


----------



## Saffa77

Hang in there - and test again on Monday - think reading these boards do your head in too remember everyone is different.... I had to stay away from the 2ww board on my 2ww as what reading into everyones symptoms which I didnt get etc.  I know its hard though!x


----------



## vw22

Hi everyone,

Dawn really hope its old blood from implantation.

I have just had embryo transfer of DE for the first time with all the Dr G immune drugs (results of tests still not in). Just a little unnerved by the pains I got an hour afterwards...its happened before, a day after transfer, short sharp 'irritating' pains...its like I am reacting to catheter or something, sort of being irritated by it. 

No one mentions this kind of pain much after DE transfer and I wondered if anyone had any views?

Could it be the immune system trying to attack them already? Or is it normal and its just discomfort from the procedure? I really hope its normal and I am not destroying them somehow...

Vx


----------



## agate

vw: it sounds more physical than physiological, if you see what I mean - as I THINK the symptoms of any immune issues would be more diffuse/vague/whole body rather than uterine cramps.  So it sounds like uterine spasms caused by a combination of the introduction of the catheter and the saline that carries the embryos.  it is common, it doesn't mean that you have lost your chance of getting pg this time, but some clinics do treat subsequent ETs using meds to prevent uterine spasm, because some docs believe that excessive uterine spasm doesn't help implantation, especially for blast transfers.  Only if it doesn't work this time, I would look into that for next time, maybe?  but hopefully you won't need to.


----------



## vw22

Thanks Agate. 

I have never read or heard about drugs to stop ET spasms and I really think that sounds like what I am experiencing. I am trying not to be pessimistic but have to admit being disheartened, especially as I mentioned this to the doctors last time. Sadly there is nothing I can do now, but maybe I will look in to it further. I can't see how anything could stick though now, given what I can feel going on...

vx


----------



## agate

vw - definitely don't give up hope!  things may settle especially if you rest up and try and distract yourself with some TV or something- - sometimes you won't get implantation until day 7 or 8 (possibly even later) - so things may settle in time. did Dr G put you on aspirin? that might help reduce uterine contractility because it inhibits prostaglandins (one of the chemical messengers that increase uterine contractility, I THINK)- only a low dose though - something like 75mg per day, I THINK is the dose he recommends.


----------



## ratsy

Hi girls 

Im back at doctor Gs on friday for follow up on my results 

Can i just ask you do i get the perscriptions on friday off him , and what do i do then how do i get the drugs off [email protected] im not sure what i have to do 

Im also waiting on DR G  doing LIT ? 

Thanks 

R xx


----------



## agate

he normally writes you a private prescription - just a note on his letterhead with the quantity and the dose - then you can shop around and find where is cheapest for it.  if you are having humira as well, maybe ask for a separate prescription for that one in case you need to get it somewhere else - you need to make arrangements for it to be transported in an icebox.  dr g will assume that if you need drips you will go to him for them unless you ask specially for him to do a prescription for you to send to [email protected]


----------



## vw22

Agate, yep trying not to be (and sound) so hope-less so early on! already on the aspirin so thats good. Will try and distract myself too and maybe raise it with the clinic tomorrow, although I know exactly what they will say...I am used to losing hope but certainly not this early on! Thanks again Vx


----------



## ratsy

Thanks agate 

I was thinking of having the IVIG  with DR G but the intalipids with [email protected] as its awkward to travel to london 

I was going to get a train on fri morn but thet wanted £350 for both of us to travel dp just walked away he said im not paying that just to london we will take the car ,so that will be a nightmare , so do you think he will mind me having the other with [email protected] 

Thanks R  xx


----------



## ratsy

Hi vw22

my clinic uses nifedipine its a womb relaxant i think you need to take it from  day of e/t but each clinic different worth an ask  

I  suffer with the same as you so i was thinking of asking DR G if i can take it and see what he thinks 

R xx


----------



## 3babies

Hi ladies,

Hey biscuit  It should be ok altough he does like you to have your 1st drip under his supervision & then use [email protected]
How much for your tickets  sounds like your DH has the right idea!! 
Your pm made me laugh  you don't take no c**p 
Now thats what i'm talking about 

2babies x


----------



## agate

ratsy said:


> Thanks agate
> 
> I was thinking of having the IVIG with DR G but the intalipids with [email protected] as its awkward to travel to london
> 
> I was going to get a train on fri morn but thet wanted £350 for both of us to travel dp just walked away he said im not paying that just to london we will take the car ,so that will be a nightmare , so do you think he will mind me having the other with [email protected]


am sure he will be fine if you explain how difficult the travel is for you. Make sure you are absolutely clear on doses/days and timings before you leave his office and write it all down - its all very confusing and he sometimes doesn't put much detail on the prescription. it probably is worth having your first ivig in his office just in case of any problems (don't forget drinks and snacks and a warm coat - and pee first - you can take the drip bottle into the wc with you and hang it on the door hook but its a mare), but if you need anymore ask for them at home because they are cheaper and the journey from your part of the world is too far!


----------



## vw22

Interesting Ratsy. I presume from what you say you have suffered this but not used anything yet. If you remember to post, would be interested in what Dr G says. Vx


----------



## Peanuts

Hi girls

Just taken me all evening to catch up on the posts, so now too knackered to do lots of personals!

Been d/r so off for baseline scan tomorrow, really hoping that I can start stimmimg - really need some happy hormones! 

Will catch up properly later in the week, but sending you all a big hug   

Dxx

PS - Newday, keeping fingers and toes crossed for you hun


----------



## mag108

hi everyone
Sorry I havent been on so much.

Had some bad news yesterday. Had a chest xray about a month ago because I have had shortness of breath for a while now. Saw the cons yesterday and he thinks I have Sarcoidosis which is an auto-immune lung condition.

Have to have more tests to have confirmed. Dr googled last night and it made me to v anxious and I am overwhelmed at having ANOTHER thing to deal with.  Tonight I did greenhouses instead to take my mind off.

V interesting to me that its auto-immune, it isnt in Dr Beer book but I have posted on Yahoo thread to see if anyone knows anything. I will contact Dr Gorgy and the Beer centre also. 

X


----------



## ratsy

Thanks agate /2 babies 

I think il def ask him for just the one its going to be a nightmare the trains or car   and thanks agate for the pee and coat   

2 babies - im not happy    im sposed to be having another nhs go rem me saying and now were still waiting they told me i was 4th on the list and now im not thats why i had the bloods done so know ive got to pay for next tx as i wont have enough time because ive had the blood tests now so they wont be any good by time i get the tx 

Well i was so mad i phoned the welsh assembly  i was livid and then phoned my hospital complaints dept and they said can i take your name and i told her and she said oh yes weve had the welsh assembly on phone to us today ( oops )     dp said omg you havnt  

Mags - hope everything ok  

peanuts - goodluck for baseline  

R x


----------



## ells

Mag's   I hope you get some answers and can get it sorted out asap.

Peanuts good luck for scan tomorrow, hopefully you will get some happy drugs started!  

Ratsy, it is quite easy getting it sorted with [email protected], IVIG and IL's are cheaper with them but we have had both our IVIg' s at Dr G's but anymore I will get a px from him and go to [email protected] - about a £3-400 saving.  I have had my IL with [email protected] and am having another one with them Friday.  Well done on creating a fuss I hope that it gets things moving and you get your NHS tx!  You go girl - I was going to write to the PM and the Queen if we had no luck!!!

Hi to everyone else, just thought I would let you know what is happening with BUPA   .  Dr G rang me this evening to say they had received an enquiry from BUPA about the blood tests I had done (not the HSG   ) and he wanted to know what I had said to them.  I explained that it was investigations into subfertility and I had been told to see Dr Eskander etc etc - which he said he understood and what he would have expected.  Then Dr Eskander got on the phone and said that they had threatened to remove his BUPA registration because they think he is giving his BUPA provider number to Dr G and patients are not seeing Dr E at all!! Apparently loads of ladies invoices are now being questioned, mine was the 8th one today.  Dr E was very appologetic and said he would be unable to say that he had seen me etc - which I totally understand as I wouldnt want him to loose his registration etc.  He seems to think that they have gotten wise to all us ladies 'bending' things a bit and have made it clear that no immune tests will be covered and Dr E has to see the patients.  Dr E was very nice about it all and said he wished that he could sort it all out as he knows how expensive it all is and hoped that BUPA may look a little more favourably on immune tests in the future.  So I have phoned BUPA and played an   to get it resolved and other then not getting the money back for the HSG and TNFa rest-test, its sorted   .    

Hope everyone has a good night.

Newday         .

Ells


----------



## Swinny

Mag108 -    

Peanuts - Good luck with starting the stimms honey  

Hello to the rest of Gorgy's angels


----------



## agate

Ells: i'm beginning to think i am quite glad that I never tried to get any of the immunes paid by bupa (when I had it)... all that stress and 'rule bending' would have knocked me flat with worry I think.  It wouldn't surprise me if BUPA and other insurers read these boards by googling for 'BUPA' etc... all insurers are very sneaky and have massive teams devoted to trying to find ways to avoid paying claims.

Do you mean £300-£400 saving per drip?  I thought its about £70 extra per drip (depending whether you can skip the ivig premed charge etc), and sometimes I reckoned that it cost a bit more overall with [email protected] because I could normally get a telecon's worth of questions whilst he set the drip up so didn't have so many £90s to pay, so I figured it was about even (except for the travel costs and the very long journey).

Mag I will look up sarcoidosis tomorrow - what do you want to know?  I have noticed that it is suggested as a possibility in almost every episode of House (and steroids are the Tx for it), but its never the final diagnosis.


----------



## TSP

Hi Girls
I'm new here, I've had a quick read but I haven't a hope of getting caught up with where you are all at tonight but I'll try to read back over the next couple of days. 

Mags tipped me off to this thread as I'm supposed to be having TX @ Serum but it has had to be postponed for at least 2 months as Dr G says I need LIT and IVIG. I've had IVIG once b4 at the ARGC.  Dr G says he should be licensed for LIT within 2 weeks, is that what you girls have heard also? Or has he been saying that now for months?  

How does the healthcare at home work? Do you have to be a UK resident? I used to be but I'm living back in southern Ireland now. Could I have it done at my mother in Laws house or at a friends? I'm still registered with a GP in London, albeit I haven't seen her for ages

Is there anyone else on here trying to organize Immune issues from Ireland? As far as I know there is no immune therapy available in Ireland - I'd love to be wrong about that.

Mags - your chest xray is ringing all sorts of bells with me.....I've been coughing for 6 weeks & v short of breath. Had an Xray nearly 2 weeks ago. The cons said it looked like COPD chronic obstructive pulmonary disease which is what heavy smokers get - I've never smoked. My gp prescribed steroids, a steroid inhaler & antibiotics & signed me off work for 10 days...I improved, but I've been back at work since Tues & ......I'm coughing again.  Maybe like you the chest/cough/breathlessness & the immunes are linked?

Good luck to you all TSP


----------



## berry55

Thanks girls for all the info about the drugs.

I have another 1.. sorry...

I have to take 5mg of folic acid so what r the vitams i should b taking to go with that? Also if anybody thinks i should b on anything else... feel free to add... lol

I'm on Omega 3 fish oils, tumeric, vit D, and pregnacare just now. 

Thanks xxxxx


----------



## niccad

Hi Berry... I'm on the following:

eskimo oils
tumeric
folic acid
selenium
zinc
vitamin c
royal jelly 
bee propolis
vitamin b complex
B6
coenzyme Q10
l-arginine
alpha lipoic acid
pregnacare conception
omega 3
aspirin

Ells - I saw DrE right at the start when I met DrG so that he wouldn't have to lie and could say he'd seen me. Bupa haven't questioned any of my bills, although I think they might question my hysteroscopy. 

Dawn - fingers crossed for you xxx


----------



## Saffa77

Berry - they say to take Vit B6 and Vit B12 with 5mg folic acid but i didnt bother as long as you getting enough of those vitamins in your diet you should be fine.

Sx


----------



## Newday

still negative know thats right really
Dawn


----------



## Louiseb26

Dawn - I really hope your wrong.I know that blasts do take longer to implant.I remember speaking to you before.I had two blasts put back 2nd cycle.On test day its was neg,went back for bloods 3 days later and it was positive.Hold on in there lovely  

Lou xx


----------



## victoria99

Quick note to 
*Deegirl *- can you confirm that you were able to get me and DH on Dr. T's list? My DH doesn't want to book flights until we get confirmation.

Thanks!!
Calgary


----------



## TSP

Dawn -  , but is it still too early to tell? Are you due to have a HCG test done?

Calgary - What is Dr T's full name please? I need to try to sort out LIT with him


----------



## agate

TSP: have you seen this thread for your questions about Dr Tsagaris and LIT?

http://www.fertilityfriends.co.uk/forum/index.php?topic=233469.0

COPD is now thought to have a significant autoimmune component. Fertility immune issues are supposed to divide mainly into 2 classes
a) autoimmune related - where aspects of your immune system are so aggressive that they attack your own body (and hence the body is hostile to reproduction and implantation)
b)alloimmune related - where the body fails to recognise the embryonic DNA (thought to be usually due to DQa matching issues) and the immune system is triggered to become aggressive by successive failed implanations or pregnancies/mcs.

So ladies with autoimmune conditions (of which COPD may be either caused or at least exacerbated by) are more likely to have fertility immune issues than the general population.

If you have a look on the LIT needed chat thread on the investigations and immunology there was a list of Irish Caillini (spelling?) who are all having LIT in Athens/immunes in London with Dr T (some of them are still based on Ireland, I think).

Calgary: I don't think Dee has posted since she got back from athens. I hope she is ok. I'll text her and hopefully she'll be in touch with us. Bilberry and Bling were out with her, so maybe they can tell you?


----------



## berry55

for takinf vit b6 & b12 what dosage should it b? xxx


----------



## ells

Dawn, I really hope that the result changes, how many days post ET are you now?  I didnt test until 12 days after.         .

Agate, you're so right about insurance companys, its not very fair when you pay so much money for your premiums.  On the drips, I paid £1600 for IVIg at Dr G's and got a quote of £1300 from [email protected] so it was a bit of a difference for me plus the cost of getting to Dr G's which is £70 for the train!!  I have only had IL's with [email protected] and I hope that Dr G will let me carry on with them now as my NK's responded better in the lab tests to IL' the IVIg   .  How are you feeling?  I bet you have a lovely bump now hun.

Niccard, I was supposed to see Dr E back in December so that I could do the BUPA thing but Dr G said not to worry about it and they would sort it out   .  I hope that you dont get any problems with your claims hun.  Dr G and E said yesterday that BUPA were starting to questions things a bit more, I know that there are a lot of ladies that have been getting stuff paid for by BUPA so I wonder if they have seen a spike in claims   .  

Berry, I',m on Zita West vits, ZW DHA fish oil, eskimo oil, tumeric, royal jelly, bee propolis, asprin, calcium tablets, blue green algae stuff (sorry cant remember what its called   ) .  I will have a look at the bottle and let you know when I get home!

Hi lou   

TSP welcome to the thread   .

Hope everyone else is okay!

Ells


----------



## agate

ells said:


> On the drips, I paid £1600 for IVIg at Dr G's and got a quote of £1300 from [email protected] so it was a bit of a difference for me plus the cost of getting to Dr G's which is £70 for the train!! I have only had IL's with [email protected] and I hope that Dr G will let me carry on with them now as my NK's responded better in the lab tests to IL' the IVIg  . How are you feeling? I bet you have a lovely bump now hun.


blue green algae is probably spirulina.
my last Dr G IVIG was £1350 vs [email protected] for £1283 (inc charge for pre med which I didn't have) for 25g (2 big bottles and 1 little one) so either Dr G's ivig has gone up a lot (I know it must depend on what price he can buy it for at the time) or there was something else on your Dr G bill? Or was it a different dose maybe? Or do you think the bill might have been wrong and worth double checking?
am mainly feeling ok now. a bit down from time to time - non TTC stuff on my mind - worries about that hideous rubbish and about money etc. drips seem to help with the joint pain. when bump kicks its reassuring, but when she doesn't I get scared there is something wrong - I can't feel her very well unless she kicks towards my sides.

Am only on spirulina, calcium, pregnacare, vit D, metformin and clex now and omega 3 if I remember to take it - although I get nervous about that one because of the clexane overlap.

Can i mention that Dippygirl has fixed up a new post of FAQ about LIT, LAD and DQa on the investigations and immunology board? If you ladies like it, maybe the mods will make it sticky?


----------



## ells

Hi Agate,  On the drips I have paid that for both mine because I need a bigger dose   - a little heavier - only by 4 kg but still better to have the right dose!!  The IL's are £360 with Dr G for me but [email protected] are £285.  I too have been worrying about the money side of things but I think I have managed to sweet talk my boss into paying me whilst I am on Mat Leave as I will stay in contact and pop in every so often - I live very close so it wouldnt be a major problem, so i hope he remembers!  I was reading another ladies diary on here the other day where she is 28/9 weeks and couldnt feel the baby much but it was due to the position of the placenta.  It must be a truely wonderful experience when the LO kicks you, I think I too will worry if I dont feel things.  Hopefully things will get stronger over the next few weeks!  Sending you lots of big gentle   and bump rubs!

Berry it is Spirulina - thanks Agate - my brain is a bit foggy!!!!

Ells


----------



## niccad

Berry - B6 i'm on 50mg. vit B complex - no idea of the amount... sorry


----------



## berry55

niccad- so b6- 50mg and then u just take a vit b complex tab? xx


----------



## Saffa77

Berry go to Holland and Barratts they in blue bottles the Vit B6 was 50mg and the b12 was 1000mg i think but ask them they will show you were they are.  The strenght is correct for both as I remember I started taking them but then i stopped.  They come in separate bottles 100 tablets in each if i remember.


----------



## berry55

saffa- thanks for that!!! I'm gonna go get them now! xxxx


----------



## bubbles09

Hi ladies 

I hope you dont mind me joining you.

First of all congrats to all the ladies who have achieved their dream and loads of    to everyone else.

I have a quick question. I have high cd3 and nk cells cd3 are 94. I had been exercising (high intensity for me) on my bike for 50 mins at least 5 times a week but stopped a while back as I have heard that this can elevate the levels. Is there any truth in this as I am gaining weight and want to do some type of exercise. Does anyone know what type of exercise is okay or do they all raise the levels.

Sorry for the me post. 

Thanks xxx


----------



## agate

I'd never heard of that until your post... but from what I can find, strenuous excercise is supposed to provoke an increase in CD3 (total T cells) and CD56 (total NK cells), but when you are on steroids, the CD3 proliferation doesn't happen.

I would GUESS the issue is how strenuous the exercise is, rather than the type of exercise.

Also bear in mind that heavy exercise regimes are associated with reductions in fertility - because basically the body cannot supply resources to reproduction as well when it is meeting heavy demands for activity at the same time.

Could you adopt a more gentle exercise regime and maybe look to your diet to reduce weight gain instead - avoiding sat fats and sugars will also help get your NKa down?

Have you been tested for PCOS/insulin resistance if weight is an issue for you despite a healthy diet?


----------



## bubbles09

Thanks Agate. I think the problem is that I am still eating the same amount as what I was when I was exercising. I love my food too much   . I will just have to cut down on the food and maybe go for walks at my own pace. Id rather do that than risk the tx. I have had a full blood count and it didnt come back on that. Im not sure whether it would show up on that though.

Thanks for your advice and congrats on your pregnancy x


----------



## agate

On the FBC all the lymphocytes (T cells, B cells and NKs) are recorded as one category - this includes CD3, CD4, CD56, CD19 etc so you can't see what the cells that are most critical for immune related fertility issues are up to without getting a chicago type flow cytometry analysis.


----------



## bubbles09

Hi Agate
I have had the chicago tests aswell as the fbc which showed up the levels which were high so I know it is cd3 and one of the nks. I will have to look back at my results. I was talking about the PCOS/ Insuline resistance on the fbc.


----------



## agate

ah i see... no pcos and insulin resistance won't show up on FBC - you'd get an idea about pcos from a high antral follicle count on ultrasound scan - and for insulin resistance you'd have to have specific blood tests.


----------



## bubbles09

Thanks for all your help Agate.


----------



## Newday

blood test confirmed negative result
dawn


----------



## vw22

Agate...What did you mean by this out of interest?

"Am only on spirulina, calcium, pregnacare, vit D, metformin and clex now and omega 3 if I remember to take it - although I get nervous about that one because of the clexane overlap."

Should I be careful taking my omega 3 and clexane?

Vx


----------



## Cozy

Dawn,

so sorry you got a BFN  

Cozy


----------



## agate

Dawn - I am so sorry.  I don't know what to say.  Its just not fair.


----------



## vw22

So sorry Dawn, don't know you as well as the others on here but know the pain you are going through. Vx


----------



## agate

Vw - fish oils have an anticoagulant effect a bit like clexane and because I've had a lot of nasty bleeds, I worry about overthinning the blood by being on both (especially when I go through nosebleed and bruising phases) - and I know that my body isn't quite as fast at processing clexane as 'average' but I know that LOs brain and nerves do need some omega 3 so I do try to take some of it.


----------



## ells

Oh Dawn I am so sorry      there are no words     .  Thinking of you hunni.

Ells


----------



## vw22

Ok I understand now, thanks Agate.


----------



## Zeka

sorry to hear your news Dawn


----------



## Louiseb26

Dawn im really sorry lovely


----------



## berry55

Dawn i'm so sorry hun


----------



## niccad

Dawn -      I am so so so sorry to hear your news


----------



## ratsy

Dawn im so sorry lovely  

R xxx


----------



## MissyMinx

Oh Dawn, I'm so very sorry.  Thinking of you...    

Em.x


----------



## Swinny

Dawn -   so sorry honey  

Rubbish day on the whole   tested + for hidden C. Got to have a follow up with Dr Gorgy tomorrow. I am absolutely gutted as this may mean that the LIT treatemnt that I had last month and that I am going to have again in Athens on the 20th of this month will have been a waste of time and money due to me now having to delay tx until this god awful thing is out of my system which by all accounts could be months down the line.

I am feeling pretty low tonight as I just feel like I am swimming against the tide. I know it's far better that I've found this out now rather than further down the line after tx and another £12K flushed down the loo, but I am just feeling a little overwhelmed by it all again. I just seem to get a plan in place and feel as though we're nearing the light at the end of the tunnel and then something pulls the rug from under me again.

Sorry for the me rant


----------



## samster

Oh my goodness TSP .... I too have been feeling short of breath and have a weird cough as though I have some kind of obstruction, the same for my dh too.  I wonder if it is from the antibiotics 

Love Samster xxx


----------



## mag108

Hi everyone

Dawn: I am so so sorry to hear that hun. Very sad news indeed. We put so much into these things its just so horrible when it doesnt work out. I hope you receive lots of love and attention.

Agate: Sarcoidois is autoimmune, hopefully once I get the further tests I can know more if its chronic or if it will go away of its own accord. The treatment for it is very similar to the immunes tx though one of them is to increase immune activity?! So I am concerned about a treatment clash and this is yet another consultant I am keeping immunes info from. Given that it is in the same family as arthritis I suppose I should just think despite the fact it isnt on Dr Beers list it could just as easily be? I am interested to know if the Beer centre know it.

TSP: Havent had a cough at all but it is one of the symptoms....

off out to friends soon x


----------



## vw22

Hi there,

Swinny, that feeling of being totally overwhelmed is so horrible, especially when you think you were getting somewhere. But rest assured that it does pass and somehow you get the strength to get to the next treatment when you least expect it.

Agate (or anyone), hate to ask but can you please help me decifer these? About to go through the book but you might put me on track a bit quicker?

Since the day of the blood tests I have had the IVIg, 40ml clexane, prednisolone 25mg a day and aspirin. So hopefully if there is anything shocking here, I might have covered it for this transfer 2 days ago.

NK Assay
50:1  result 17.3
25:1  result 10.5
12.5:1  result 4.9
IgG conc 12.5 50:1  result 5.7
IgG conc 12.5 25:1  result 4.2
IgG conc 6.25 50:1  result 8.2
IgG conc 6.25 25:1  result 4.7
%CD3    result 67.1
%CD19  result 4.7
%CD56  result 23.3
% of CD19+ cells, CD5+  result 10.6
.....................................................
TH1:TH2 intracellular cytokine ratios
TNF-a:IL-10 (CD3+CD4  result 29.3
TFN-g:IL-10 (CD3+CD4  result 11.0
......................................................
Factor 11 G20210A mutation    negative
FactorV (Leiden) G1691A mutation  negative
.......................................................
MTHFR gene mutation
POSITIVE (Heterozygous for the MTHFR C677r mutation

Couldn't get the tests done with DP as he is working away...

Thanks a million
Vx


----------



## niccad

Oh Swinny - what a nightmare. I completely understand how you're feeling. Delays are so awful and I always end up getting really low when I don't have actual dates for when I can start another tx. Best to get the hidden C sorted out now though. Part of me is wondering if I should've got tested also before going ahead... ARGH.... I can't handle waiting....  
x

vw22 - the numbers don't look that bad to me. 50:1 should ideally be below 15 but yours isn't bad. I can't remember the other levels off the top of my head but did any of the CD numbers have * next to them? I'm not sure about the CD3 one... your others looks ok. Cytokine ratio should ideally also be under 25 so you're nearly there.... Did you have all the immune tx AFTER these results? If so I'm sure you are covered xx


----------



## Saffa77

Hi VW just got on and saw your results i will try my best but looks like you NK cells and your CD56 (which are the NK killing cells in your blood) are a bit high. - So IVIG or intralipids for this which you have done and maybe steroids.  You NK assay is 17.3%and think the highest should be below 15%  Your CD56 think max it should be is 12 so yours are a bit high at 23 - mine were 30% at my retest and Dr gorgy wanted me to have IVIG straight away as IVIG is what tackles these cells best.  

Looks like you CD19+5 are a bit high too meaning you would need gestone (progesterone injection in butt) which is what I am on.  Mine were 11.6% - the max it should be is 10%

You are also positive to MTHFR whihc is hetero meaning you only got one gene from your parents and not both and clexane is used for this and aspirin i think which you are on clexane anyways - those are the only results that stood out for me but am sure Agate or someone else will come along and explain it much better to you!! LOL just thought i would try.  overall your results are not bad at all!!


----------



## vw22

Thanks saffa and Niccad so much, great to get an initial reaction...

BUT yes there were lots of *, just thought they didn't matter (er why?!) So heres a repost with them on...

And yes I had the tests done and the same day (no results) had IVIg, 40ml clexane, prednisolone 25mg a day and aspirin since, so maybe they have tackled some issues already. 

NK Assay
50:1  result 17.3
25:1  result 10.5
12.5:1  result 4.9
IgG conc 12.5 50:1  result 5.7**
IgG conc 12.5 25:1  result 4.2**
IgG conc 6.25 50:1  result 8.2**
IgG conc 6.25 25:1  result 4.7**
%CD3     result 67.1
%CD19   result 4.7
%CD56   result *23.3
% of CD19+ cells, CD5+   result *10.6
.....................................................
TH1:TH2 intracellular cytokine ratios
TNF-a:IL-10 (CD3+CD4   result 29.3
TFN-g:IL-10 (CD3+CD4   result 11.0
......................................................
Factor 11 G20210A mutation    negative
FactorV (Leiden) G1691A mutation   negative
.......................................................
MTHFR gene mutation
POSITIVE (Heterozygous for the MTHFR C677r mutation

** NOTES; >10% reduction in killing at each effector/larget ratio

Vx


----------



## ells

Swinny, hunni what a pain.  Is it worth cancelling your next LIT and going a bit later?  But like you and the other ladies said at least you know now before starting again.  It is sooo hard when you have your plans disrupted.

VW, your results are not that bad, looks like you will get away with not having humira.  I wonder if Dr G will recommend IL's to help with things.  I am sure some of the other ladies will be on soon to give you some more info/advice.

Mag, hopefully you will get some clear information about it.  As its the same family as arthritus do you think you could use humira?  It is hard not telling the doctors about the immune tx - I had to be careful with my crohns doc and the clinic.  Hope you have a lovely evening out.

Hi to everyone else  

Ells


----------



## agate

Vw: the other ladies have basically already told you but....

50:1  result 17.3 (your killing power is elevated, should be below 15 but the IVIG and pred should have been bringing this down for you)
25:1  result 10.5 
12.5:1  result 4.9
IgG conc 12.5 50:1  result 5.7 (in the test tube, IVIG works well on bringing down your NK killing power)
IgG conc 12.5 25:1  result 4.2
IgG conc 6.25 50:1  result 8.2
IgG conc 6.25 25:1  result 4.7
%CD3     result 67.1
%CD19   result 4.7
%CD56   result 23.3 (the proportion of NK cells in your blood is also a bit high (as well as their killing power (above)), but the pred and ivig should be helping with this)
% of CD19+ cells, CD5+   result 10.6 (only slightly over the target range - are you taking pessaries or progesterone shots?  maybe Dr G will suggest these (or possibly increasing your dose?), but you are probably ok as it isn't up by much)
.....................................................
TH1:TH2 intracellular cytokine ratios
TNF-a:IL-10 (CD3+CD4   result 29.3 (good that your TNFa isn't high)
TFN-g:IL-10 (CD3+CD4   result 11.0
......................................................
Factor 11 G20210A mutation    negative
FactorV (Leiden) G1691A mutation   negative
.......................................................
MTHFR gene mutation
POSITIVE (Heterozygous for the MTHFR C677r mutation (the clexane you are on should be enough for this, and you are probably already taking enough folic acid so long as you are on pregnacare or something else with 400 mcg in it)

Sounds like the Tx you are already on is sensible, imho.

mag: my understanding is that sarcoidosis is a 'classic' autoimmune so it should be in the same group as lupus and RA for Dr B's theories.  I can't find anything about any Tx for it that are supposed to upregulate the immune system for it as I thought the basic idea was to treat it by immunosuppression e.g., prednisolone or humira, or immunoregulation e.g., ivig.  I would hope that the upside is that maybe you are identifying the problem that is causing your fertility immune issues and that by treating it, they may get fixed under the NHS, in the same way that humira for crohn's can help ladies with that problem underlying their TNFa issues to get/stay pg.


----------



## Ourturn

Dawn - I am so very sorry     

Mag - your diagnosis could be a blessing in disguise if you can humira etc via the nhs  

Swinny - responded on another thread to you  Just had a thought. When you speak to Mr G ask him what the number was next to the word positive and what this means. Penny asked me for my number and told me it meant I contracted C many years ago. I also THINK this may influence what antib's you will need.
Diane am I right? 

Agate - how are you feeling? 

Ells - do you have a scan soon?

Shellie - hope everything is going well...you must be in Reprofit by now?

Hi everyone  

Sorry not around much. Can't get ion at work. On day 11 of the antib's...14 days left to go! 

Anna x


----------



## vw22

Thanks so much Agate, and everyone else for their comments. Vx


----------



## tinks21

Hi Everyone,

Firstly, thank you Anna for your note about where to get the prescription drugs.  I have an appointment for Monday with the GP so will try to get some of it there. (hopefully)  I had a look on the chemist direct website and the prices seem quite reasonable so will probably order from there if no joy with GP.

Sorry, I don't post msgs too often, I try to keep up with this thread as there is such valuable information discussed (agate you really seem to know what you are talking about and explain everything so very well), and spend ages reading all the posts and then I run out of time to write anything.  Thank you all for your contributions.  It not only helps with our knowledge but I suppose we are all in the same boat in some form or another and it is such an encouragement to not feel "alone" in this!!  Thank you all  

I hope you are all doing well...  Is anybody cycling with Dr G at the moment (sorry if you have said you are - my head spins with all the info!!)?  I had hope to be cycling soon but am now not too sure.  Unfortunately my LAD retest results are not that good, as all my levels have dropped!!!!!  Was due to start stims next week, am now not sure what Dr G is going to advise.  I have an appointment today so we will see.  I have also decided to do the latent C test - might as well dot all the i's and cross all the t's while I am about it!!!

Anyway...better get on - hope you all have a lovely day and enjoy the sunshine! 

Tinks xxx


----------



## vw22

Can anyone advise me please on how long the ivig stays in your system? (2 large bottles and 1 small).

I had the ivig 17 days ago (transfer 3 days ago, and test date 7 days ahead).

Given that my result levels weren't too extreme too, does anyone think its ok to wait til after my test date to before doing anymore. 

Vx


----------



## deegirl

Dawn - I'm so sorry to hear your sad news  

Ells - thinking about you today hun and hoping all goes well  

Tinks - will send you a pm shortly.  Sorry to hear your results are down  

Diane - how are you keeping?  

Hi to everyone else


----------



## agate

Tinks: did they drop by much? what sort of LIT was it?

vw: ivig should reach maximum effect about 7-10 days after infusion and should last in your system for at least 4 weeks post infusion.  Many ladies have the drip(s) 7-10 days before ET, then have another one immediately on BFP, then often have another one on first scan at 6.5 weeks (if Dr G thinks necessary), then retest NKa after 7-10 days before deciding if anymore are needed.


----------



## niccad

Ells - good luck today. Thinking of you xxxx


----------



## vw22

Thanks Agate. No more questions from me for a while hopefully!


----------



## agate

Ells: good luck for today - hope you see something lovely on the scan.


----------



## deegirl

Just a question about this chylamdia test - I know that it would appear that many girls getting the stardard test in the UK doesn't appear to always be accurate.  Have these ladies husbands been tested in the UK and it also shown up as negative?  

Thanks....Dee x


----------



## Peanuts

Dawn - so sorry to here your news hun     Hope you and DH are taking car of each other
Dxx


----------



## TSP

Agate - thanks
Deegirl - Yes the Dh's test -ve here aswell. bothe my Dh & I tested -ve here a week b4 testing +ve for C @ Serum!!!!


----------



## Ourturn

tsp - my dh was not tested just me, but he is taking the same anti-bs as me as we may well have been passing the infection to and from each other 

Tinks - I was only able to get steroids from my gp, but got gestone & celexane via my nhs fertility consultant. Now they have prescribed it my go will be happy to as well

Anna x


----------



## TSP

sorry, I meant that IF the DH's are tested here they also don't seem to detect the hidden C but you don't need your Dh tested coz chances are if you have it your Dh does too


----------



## deegirl

TSP and Sobroody1 - thanks for that.  I have the tubes from Dr G to send directly to Athens.  Can I ask how long the result takes to come back?  

Dee x


----------



## bubbles09

Dawn, Im so sorry to hear your news  big   

Ells good luck for today.

Just a quick question about the hidden c test. I tested positive for c 8 years ago and me and dp had the course of antibiotics which cleared it up on all subsequent tests. Has anyone had the hidden c test after clearing it and got a positive? Im due to start tx next month  and was wondering whether I would need to have it done.

Thanks

Love and light to all x


----------



## agate

according to the clinic that sell the C test - 46% of their IF patients who tested negative on the ordinary test, tested postive on the menstrual blood test.  I think most of the ladies from here who have tested positive on the greek test have tested negative here before and many of them have had short courses of precautionary anti Bs in the past- but I don't remember anyone mentioning that they had been treated for a definite C infection and been cleared and then had a positive on the greek test.  don't know if this helps.


----------



## bubbles09

Thanks Agate. Hope ur well x


----------



## deegirl

Agate - I have a question and hopefully you can help answer it.  Dr Gorgy yesterday gave me the container to send a specimen of menstrual blood off to Penny in Athens.  However he has also advised me to take the bcp continuously (he was ditering over this but eventually said continuously) until June 17th, then to start stimming on 25th June.  However if I do that I won't know if I have chlymadia until I'm stimming!  Then if I do have it I would have to cancel my cycle!  So I'm thinking I should take a break in my bcp and have my period and do the test....makes sense.  My dilema is yesterday was my first pill free day but as Dr G advised to take continuously I took the first bcp from a new packet.  So technically today would have been my 2nd pill free day but because I took a pill yesterday it will have stopped my period.  I HOPE I AM MAKING SENSE!!!   So my question is do you think it would be ok not to take the second pill from a new bcp pack and then I'll have my period?  Also would I allow a full 7 free days (as normal) before staring a new pack or 6 free days (since I've taken an extra pill)?  My mind is all over the place!!!  Thanks!  

Dee x


----------



## ells

Hi ladies,

just want to pop on quickly before I go for my IL drip .... scan went really well,  two sacks and fetal poles and two wonderful heart beats.  We are abosolutely stunned and over the moon.

I will pop back later for a proper catch up.

Ells


----------



## Ourturn

Dee - it took 1 week to get to athens, but once they received the sample they turned it round in 24 hours. 

Ells - thats great news, congratulations!


----------



## daisy66

Hi - hope you don't mind me joining in here - I am planning to go for IVF and think I probably have some immune issues etc, - I have been  looking at going to either Mr Gorgy or the ARGC -  any advice would be extremely welcome.  

Ells massive congratulations


----------



## agate

deegirl said:


> Agate - I have a question and hopefully you can help answer it. Dr Gorgy yesterday gave me the container to send a specimen of menstrual blood off to Penny in Athens. However he has also advised me to take the bcp continuously (he was ditering over this but eventually said continuously) until June 17th, then to start stimming on 25th June. However if I do that I won't know if I have chlymadia until I'm stimming! Then if I do have it I would have to cancel my cycle! So I'm thinking I should take a break in my bcp and have my period and do the test....makes sense. My dilema is yesterday was my first pill free day but as Dr G advised to take continuously I took the first bcp from a new packet. So technically today would have been my 2nd pill free day but because I took a pill yesterday it will have stopped my period. I HOPE I AM MAKING SENSE!!!  So my question is do you think it would be ok not to take the second pill from a new bcp pack and then I'll have my period? Also would I allow a full 7 free days (as normal) before staring a new pack or 6 free days (since I've taken an extra pill)? My mind is all over the place!!! Thanks!


If I understand this right then it must mean you've already been on the pill for 21 days and have just taken a pill from another packet making 22 days total? If so, then I think I would be tempted to do exactly what you suggest and stop if for a few days (maybe 4-6 days)- long enough to get enough of a bleed to do your C test and then restart and take continuously as planned. I am guessing at 4-5 days because I believe that most ladies take about a 3 day gap to start their full pill withdrawal bleed - it isn't a proper period because the lining produced on the pill isn't a proper full thickness one but I can't see why it shouldn't be enough for the C test. To be absolutely sure, I guess you could try to contact locus medicus (where the test comes from in athens), but I think I'd probably just get on with it.

Ells: what fabulous news. I didn't see twins in my crystal ball either!  Are you going to pop over to the pg with immunes thread sometime now it all feels real for you?


----------



## ells

Thank you ladies - so amazed by it all - even DH had a tear at the scan it was truely awsome.

Agate, yes I will join that thread   .  Dr G did say twins to us right away after hearing my levels!!

Daisy, my advice would be Dr G as he is more aggressive with his immune tx and sticks to the Beer protocol.  He very much taylors his tx to you and your needs.  I know some of the ladies on here have had experience with the ARGC so I am sure that they will be on soon to give you their views and opinions.  Good luck though huni.

Hi to everyone else, dinner is calling.

Be back soon,

Ells


----------



## DND

Hi, Today I heard about some risk for breast cancer for women with MTHFR C677T mutation. A Swedish study shows that risk increases with folic acid intake. http://www.ajcn.org/cgi/content/abstract/90/5/1380 How many of you are MTHFR homzygote? I am afraid to continue with folic acid- in particularly this high concentrated (5 mg). I have been on folic acid 0,5 mg for three years now. 
I am worried so much today.  Dr G wrote yesterday and recommended treatment with 25 mg prednisolon besides of ASA, Clexane, Intralipids and IT. Do you take this one together with Clexane, intrlipids and LIt as well? How do you feel? 
Is it necessary to be on prednisolon with all other drogs?



This post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Louiseb26

Hiya Ladies

Can i pick someones brains on the C test.I'm going to do the test tomorrow,and was wondering if you can use a tampon to collect what you need.
Also do you ring fedex to pick this up... 

Ells - What a magical moment for you lovely      well done Hun

Lou xx


----------



## agate

DND: annoyingly - you have to pay to read the full article and the free bit doesn't say how much the increased risk actually is.  So I am left knowing there is an increased risk if you have the MTHFR mutation AND your blood folate level is also high, but not knowing whether its a big increase or a tiny one.

The article does mention (what we already know) that having the MTHFR **** mutation is more likely to mean your folate is low (which is the reason why if you are TTC with MTHFR you are advised to supplement your folic acid and, as I mentioned above the increased risk of breast cancer is only for women whose blood folate level is high despite their having MTHFR mutation.

We already know that high intakes of folic acid (not natural folate from veggies) is associated with a slightly increased risk of bowel cancer in everyone - which is why you are generally advised to save your 5mg folate for when you are actually likely to conceive and for the first 3 months of pg - and only take 400mcg the rest of the time - 0.4-0.5 mg (400-500mcg) of folic acid is NOT likely to be a high dose for someone with MTHFR ****.   Although, I can see this is v tricky when you are MTHFR **** and are TTC for ages.

Basically I would say: don't panic - the increase in risk may be tiny - we can't tell from this info, you maybe 'normal' for MTHFR **** i.e., your blood folate levels may still be low (in which case this study doesn't show any increased risk) which is why you are on the high dose for TTC.  If the risk turns out to be significant, then there are other strategies e.g., you could get your blood folate levels measured and then only take the folic acid you need, or maybe you could try to get a high dose of natural folate and avoid supplementation by following a careful diet with lots of green veggies.

What is ASA - is it aspirin?

The pred does a different job to some of the other drugs.  The clexane (and aspirin) thin the blood and prevent clots - particularly important for MTHFR hetero.  The LIT is to try and bring your LAD antibodies up.  The intralipid and the pred are both there to try and prevent surges of NKa and TNFa. 

Pred is a very commonly taken drug here.  Many people have to take it for years for autoimmune diseases.  You generally feel fine when you are taking it so long as you take it with breakfast -so it doesn't keep you awake at night.  You can feel a bit rubbish when you stop it (you have to stop it slowly if you've been on it for more than 3 weeks).  The main risks with it come from taking it long term (as it can thin your bone density), but you shouldn't need to be on it for that long.  The other risk is from infections like chickenpox or measles which can be pretty nasty if you catch them whilst you are taking it - but hopefully you are immune to these already and would of course avoid time with anyone who was suffering from these whilst you were on pred.


----------



## Ourturn

Lou - you can either use a tampon or collect blood via a moon cup. I posted my sample via international signed for delivery..only cost £6


----------



## Louiseb26

Anna thank you lovely   I'm soooo   about this test.How many days have you got left on the antibiotics?


----------



## deegirl

Agate - thanks so much for taking the time to reply....as always!  You are truely wonderful with such a BIG heart!  Thank-you.  Can I ask was it you that created the FAQs on LIT thread??  (Or is that a silly question!!!  )  It really is fantastic and must have taken ages to create, it's like a dissertation for a degree course!  Right, I'm going to stop the bcp long enough to get a bleed and then continue again.  I guess I was just wondering if I stopped, would I need to stop for the full 7 days but I suppose I can't see why I would have to do that if I'm going to be taking continuously.  As you say best to get on with it.  

Sobroody1 - thanks for that information regarding length of time to get results.  Also that information that Louise asked you is useful for me too.  I've never used a mooncup but guessing you can buy them in boots?  Hope the anti-biotics aren't too draining on you, how many days have you left on them?  I suppose part of you is relieved that a possible cause has been found and that it's easily (it appears to be) treated.  

Ells - what can I say!?  You must be estatic!  1 heartbeat never mind 2 would be amazing.  So pleased for you hun, enjoy every moment of it.  

Louise - all the best for the hidden chlamydia test, I’m gonna do it too as soon as I get a bleed.  

Daisy66 – I had the same predicament as you did.  I decided to go with Dr Gorgy and I’m glad I did….so far!  It’s a personal decision but like Ells said he tailors his treatment to you and I have found that he is always available if you have a question and need a fairly quick answer.  In my experience so far anytime I’ve phoned to speak to him if he’s busy (he’s usually got a patient or in a meeting) he has always phoned back that day or the next morning (when it wasn’t urgent), once he even phoned in the evening.  I have never felt rushed or that he doesn’t have time for me.  He appears to be genuinely caring and interested.  I would imagine (but I don’t know) that the ARGC (and possibly most clinics) would not have the same time to devote to every patient and would not be able to squeeze girls in at the last minute.  HOWEVER do be warned that if you do go to Dr Gorgy you really have to do your own research as he expects you to know a fair amount about immunes etc.  He works with you rather than dictating what you must do, there’s an element of teamwork where you have to decide at the end of the day what’s right for you in terms of treatment, tests etc.  He cannot have all the answers, he said once to me ‘there’ll always be more that we don’t know than what we do know’.  I hope this helps somewhat and all the best with whatever you decide.

To everyone else…hugs and goodnight


----------



## DND

Agate - thanks so very much for taking the time to reply. My folate value was 34 nmol/l  (the reference is >5) and homocysteine 6,2 mikromol/l (the reference interval: 5-15) when I checked them last time in September 2008. So you mean that I have to take 5 mg folic acid just 3 months before pg? 
One more time I don't understand while I do need pred. I don't have elevated either NK or TNF. CD3+ cells are elevated and CD19+CD5+. Are those NK also? I thought that NK cells are CD56+ and those are normal as well as earlier tested CD16/+56+3-. 
One good news is that my C test is negative. I need to send my biopsy now but I am little worried because it seem that I have to send it on a Friday. What is the address that you send your samples to dr G. He wrote just "send to us".


----------



## DND

I have just tested positive with ovulation test  . Is it to early to take biopsy on Monday 19 th? I am away in my job 20-22 th April  .


----------



## agate

DND said:


> Agate - thanks so very much for taking the time to reply. My folate value was 34 nmol/l (the reference is >5) and homocysteine 6,2 mikromol/l (the reference interval: 5-15) when I checked them last time in September 2008. So you mean that I have to take 5 mg folic acid just 3 months before pg?
> One more time I don't understand while I do need pred. I don't have elevated either NK or TNF. CD3+ cells are elevated and CD19+CD5+. Are those NK also? I thought that NK cells are CD56+ and those are normal as well as earlier tested CD16/+56+3


I think you probably need to doublecheck with a doctor about your folic acid questions. But... if those figures and reference ranges are right, it suggests your plasma folate was ok (but it doesn't give us any idea whether its at the high end of ok (which is where that article you gave suggested there might start to be a link with breast cancer - although the bit of it that we can read for free, doesn't put a numerical value on 'high') or the low end of ok), and your homocysteine level doesn't seem to be elevated. My understanding is that the need for folic acid increases as your homocysteine level increases, so I would GUESS that if your levels are like that all the time, you shouldn't need an enormous dose of folic acid all the time because your homocysteine levels are normal. So I would be tempted to think that you could just take low dose folic acid when you are not cycling and then start the 5mg dose just before you cycle (and stay on it for at least the first 3 months of pregnancy to reduce the chance of spina bifida/cleft palate in the baby) - but for the longer term you should really be asking your GP because you are wanting to know about the longer term health risks of MTHFR (there does seem to be quite a lot of disagreement between docs on this topic though).

CD3 and CD19+5+ are not NKs - CD3 are total T cells (excluding NKs) and CD19+5+ are a class of B cells that are often associated with autoimmune activity. I THINK prednisolone ought to reduce or at least prevent further rises in CD3 because it is supposed to reduce T cell proliferation, but it is also supposed to increase the proportion of anti-inflammatory cytokines so it should prevent surges in TNFa. I don't know whether it affects CD19+5+ but I would have thought it ought to prevent rises in it, because prednisolone is commonly prescribed for autoimmune conditions with a high CD19+5+. As I said to you before, its an extremely common drug, and I would see the risk/general acceptability of the different immune Tx as being something like this

gestone/cyclogest>prednisolone>clexane>aspirin>ILs>IVIG>paternal LIT>humira>donor LIT - in order of least contraversial to most contraversial treatment - in my own personal view.

I would see it as low risk and be quite happy for anyone in my family to be on it if they needed it for something.


----------



## tinks21

Hi Agate,

I hope you are doing well, thank you for your response to my post about the low LAD test!  

My first set of results were :
Tcells(IgM) 12.9 
Tcells (IgG) 9.6 
Bcells (IgM) 18.2 
Bcells (IgG) 44  

After LIT is was 
Tcells(IgM)1.3 
Tcells (IgG)11.3
Bcells (IgM) 21.9
Bcells (IgG)30.7

Dr G has suggested that I have donor LIT.  He is expecting his clinic to be up and running by the end of April so I have decided that I will wait and do it at his clinic.  He is going to be doing donor LIT so that is good.  

Any thoughts you might have would be much appreciated.

Louise - all the best for your hidden C test - I too will be doing it soon!!  Akvil told me to just ring Fedex, she wrote the number down for me, and they will collect it.  We don't need to pay anything as it will go straight onto the clinic's account!  Our £200 covered all of this.

Daisy66 - I would echo Deegirls comments,  the more appointments I have with Dr G and the more I get to know him, the more I can see how caring he is and he does take a very individualistic approach to treatment, which I think is very important for us especially with all the immunes. 

I hope you are all enjoying the lovely sunshine this weekend.  I think I must end off now and go outside to make the most of it before it disappears again!!! 

Bye for now....
Tinks xx


----------



## Ourturn

Dee and Lou - day 14 of antib's, 11 days left so over half way there! I'm feeling pretty rotten on them so can't wait to finish. But the acid reflux whilst still with me is much better today thank goodness.

You can buy a mooncup from boots £22), just read the back to check you get the right size. I had a nightmare getting mine out so that has put me off and might use tampons for retesting.

Happy weekend everyone

x


----------



## agate

sobroody1 said:


> You can buy a mooncup from boots £22), just read the back to check you get the right size. I had a nightmare getting mine out so that has put me off and might use tampons for retesting.


You can also buy a disposable cup called 'instead'.

mooncups are really easy to use and much better than tampax when you get used to them, honest. the trick to getting them out is to slide your finger up the side of it - that breaks the suction that can form between the cup and cervix - then the cup can be pulled out easily. They are supposed to be healthier for you than tampax because they are chemically inert (tampons contain bleaches and other chemicals from their manufacture) and they don't dry out your vagina - so its supposed to leave a more natural environment so thrush and other bugs are less likely to take hold.

If its a choice between towels and a mooncup - then I'd say the mooncup is more comfortable and reliable against leaks.
If its a choice between tampons or a mooncup - then I'd say it probably isn't so healthy for your body to be using tampons if you are TTC because of the chemicals and drying effect.

ok... will get off mooncup soapbox now... sorry ladies.


----------



## agate

tinks21 said:


> My first set of results were :
> Tcells(IgM) 12.9
> Tcells (IgG) 9.6
> Bcells (IgM) 18.2
> Bcells (IgG) 44
> 
> After LIT is was
> Tcells(IgM)1.3
> Tcells (IgG)11.3
> Bcells (IgM) 21.9
> Bcells (IgG)30.7


hmm... well if you ignore the T cells and just look at the B cells - at least they haven't changed much and even now the the B cells IgG is still above the level of 30 which Dr B said we were aiming for (although 50 was supposed be even better). So maybe as Dr G said, you are just looking at general variation over time between the 2 snapshot times represented by your 2 tests - and I guess, that the LIT you've had hasn't helped you. Have you tried asking Dr T?

I'd be interested to know the DQa of the donor that Dr G proposes for you and how that compares to your and your DH's DQas. I think someone said he was intending to use the DH's of other ladies as a 'swap' to provide donors - so I'd be interested to know how many donors he can offer that way, and whether he has some special insight into how to choose the best donor for a particular lady.


----------



## Zeka

Hello luffly ladies!! Hope you are all doing well today 

Sorry to read (catching up lots!) that a few of you have had some very hard news recently. Thinking of you all.

Have to say, its quite a relief that Dr G is starting LIT soon - at least it provides a fall back plan if levels don't go up after two lots in greece,as I really can't take another 2 days off to get to athens (and I don't want to give my big bad boss any reason to think I am having tx again - want him to believe IVF is out of the question and the thought of babies doesn;t ever cross my mind! ...Oh, if only he knew the truth!!!!)  

LOve to all, 
Zeka xxx


----------



## vw22

Hi girls just reading those that are about to collect for the C test.

Warning the info is a little bit yuk!*

Just thought I would mention how I got the blood for C test in case its of interest. Mine was negative so I feel comfortable there was no contamination etc. 

Not wanting to use tampons ever again for reasons Agate said and with all these treatments just felt like the less foreign stuff up there the better! and knowing that my period can be quite light on day 1 and 2 when you are meant to collect wasn't sure I would get enough anyway. So I used a small spoon. It sounds horrible but someone else recommended it and it worked fine. It was really easy and I got loads more than I needed and exactly when I needed it too.

Probably not everyones 'cup of tea' for doing it, but another option! and free!!!

Vx


----------



## ratsy

Hi girls 

I agree with Agate and vw22

I have heavy AF  so i just did the hiiden c it normaly and it worked for me mine was negative  

I had the start of toxic with tampons yrs ago when i went to florida i was at one of the water parks and started af and i bougt some at the park about an hr later i had banging headack felt sick i just thought it was the heat went back to hotel as i was so ill couldnt get off the bed my head hurt so much , I took the tampon out within 10 mins it went i was fine and it dawned on me that was what it was 

Ive never used them since , on a recent visit to my fertility accupuncturist she asked me if i used tampax i said no and she said oh good she believes if youve got endo it aggravates it and makes it worse as tampax have got chemicals in them 

hopes this helps anyone with endo dont know how true it is but i trust  her they do know there stuff  

R   xx


----------



## Louiseb26

Hiya Ladies

Anna - Thanks again for the info...Managed to get it all done today.Sorry your feeling low with the antibs...hold on in there  

Dee - Good luck lovely with the C test.A good tip for collectting this...lay down on your back for about 30 mins.Go straight to the loo ( don't forget to hold this in till you get there) There should be enough of a flow for the bottle...This is sooo a man's world  

Tinks - Thanks for that.I don't think FedEx picks up on a Sat.The number Akvil gave me was closed.So i have put it in the fridge till Monday.Good luck on testing...I'm   this is OK.

Agate - You are so right about the tampons (bad idea) And i thought i would leave the mooncup alone as i cant get my head round things like that...and i didn't fancy coming on here asking you how do i remove it     Got there in the end.

Hope everyone is enjoying the lovely weather  

Lou xx


----------



## deegirl

Louise - thanks for the tip!  However I did buy a mooncup in Boots today!  I was disgusted at having to spend £22 on one but then again I might even get used to it and never use towels again!!    I worked out that I probably would get my 'money's worth' from it fairly quickly!    Although to be honest I wish I had ready Agate's post about 'instead' as I like the idea of disposable mooncups as I can imagine after washing my mooncup out I'll be worried about remaining bacteria etc.  

Ratsy - that's interesting what your accupuncturist said about tampons, when I found out that I had endometriosis I stopped using them immediately as it just seemed like the right thing to do.  

Sobroody1 - over half-way there...yay!!  

Tinks - nice to see you posting on here again, even though your my pm buddy anyway!!   

Bed is calling...nite girls, hope tomorrow is as glorious as today was although what am I going to wear to church tomorrow    I don't have my summer wardrobe organised yet!! 

Dee x


----------



## fi7

hi all
just bookmarking


----------



## fi7

daisy66 said:


> Hi - hope you don't mind me joining in here - I am planning to go for IVF and think I probably have some immune issues etc, - I have been looking at going to either Mr Gorgy or the ARGC - any advice would be extremely welcome.
> 
> hi all
> 
> big hugs to everyone, not been posting for a while but i have been reading
> 
> ells - fantastic news, congratulations so pleased for you.
> 
> Daisy - ARGC are excellent in my view at the stims phase seem to get really good results with most people ( i have only done one cycle but met lots with good results) However on the immunes i think they are not good, they seem to miss detail on peoples files and just take a broad brush approach rather than individual.
> I have not tx with Dr G but he definately looks in more detail at the immunes and takes more time with you as an individual. I think he will do immunes for you whilst you cycle with the ARGC. Not sure what the ARGC would think of that, but it was a route i was planning to take.
> I have know found out that Dr Gafar (ex ARGC) is set up in Epsom for stims with the lab work being done at the lister or the ARGC, so that is now a route i am exploring, whilst still seeing dr Gorgy for immunes.
> 
> i hope this helps
> 
> fi


----------



## fi7

hi all 

big hugs to everyone, not been posting for a while but i have been reading

ells - fantastic news, congratulations so pleased for you.

Daisy - ARGC are excellent in my view at the stims phase seem to get really good results with most people ( i have only done one cycle but met lots with good results) However on the immunes i think they are not good, they seem to miss detail on peoples files and just take a broad brush approach rather than individual.  
I have not tx with Dr G but he definately looks in more detail at the immunes and takes more time with you as an individual.  I think he will do immunes for you whilst you cycle with the ARGC.  Not sure what the ARGC would think of that, but it was a route i was planning to take.  
I have know found out that Dr Gafar (ex ARGC) is set up in Epsom for stims with the lab work being done at the lister or the ARGC, so that is now a route i am exploring, whilst still seeing dr Gorgy for immunes.

i hope this helps

fi


----------



## Lois

Hi everyone

Has anyone who lives in Hertfordshire been prescribed Clexane &/or Gestone on the NHS either during tx or pregnancy by their GP?
Just asking because mine is refusing & I'm seeing him again tomorrow pm. I told him that I understood that some women did get it and he said but they won't be ones living in Hertfordshire!

Thanks in advance.

Lois xxx


----------



## Clarebaby

Hi All,

So have read the posts re the C test and am off to get my Mooncup - yuck!.  But tell me, how much blood is enough for the test - does the tube have to half full or what?

Having had EVAC at end of March I have no idea when my next AF will be, hope it's not too far off.

Saw Dr G last Tuesday and had all our bloods taken, so hoping to get some informative results soon.

Hope everyone ok.

Thanks


----------



## Ourturn

Clarebaby - I only had about 3 drops and they were able to test that so don't worry! No way could I have filled hald a tube  

Lois - try a different gp. I take it you have explained you have a blood clotting disorder? 

Anna x


----------



## 3babies

Hi Lois, that's interesting to know! I will try asking my GP this time but not banking on the NHS for help.
Dr. Gorgy will write you a prescription for Clexane * Gestone
We paid about £7 for a box of 2 pre-filled syringes in Greece & no prescription is needed. You just buy them over the counter.
Not sure how much they are here in the UK ?

Have you seen a haematologist who may be able to help with your GP issuing you prescriptions for these in the near future.

2babies x


----------



## Saffa77

Ladies

Quick question:  Especially to the donor egg ladies:

When did you stop your drugs ie.  Prednisolne and gestone?  Also the Estrofem/progynova which I am still taking 3x 2mg tablets a day??

My clinic abroad has told me I can stop my estrofem/progynova at 11 weeks which is tomorrow but should I also ask Dr Gorgy?

I know clexane is up to 31 weeks.  The gestone they say is up to 12 but if you have high CD19+5 should you stay on it until 16 weeks?  Also how do you wean yourself off prednisolne?

Thanks ladies

Sx


----------



## agate

Saffa

am pretty sure that Dr G will say its ok to stop the estrogen before everything else - but you should definitely check with him to be on the safe side.

if you are bleeding/spotting at 12 weeks still he might stay on the prog for a bit longer (Dr B said 16 weeks if you have any autoimmune issues - and I guess arguably high CD19+5+ is autoimmune).

for the pred he says you can stop over 12 days - so 20mg 3 days, 15mg 3 days, 10mg 3 days, 5mg 3 days.  The GP said that was fine to to drop like that initially, but it was better to extend the time at 5mg for a few more days and then rather than stop dead at 5mg - do 1 day on and 1 day off for a few more days before you stop altogether - it really depends on how yuk and headachey stopping makes you feel.


----------



## Saffa77

Agate

Thanks for that called Dr Gorgy but he is on leave this week think I am just going to carry on with my Oestregen this week until I speak to him on Monday what do yous think?  DOnt think an extra week is going to do me harm is it?

Sx


----------



## DND

Hi girls, I have question about my biopsy!  Is it too early to take the biopsy on Monday the 19th (or the day after) if I had positive ovulation test last Saturday the 10th April. I do not know when my period will come so I have to count acc. ovulation. Which address do you use to send the sample?
All the best


----------



## niccad

Ells - Not been on in a while so just saw your post...YIPPEEEEEE!!!! I am so so happy for you. How exciting!! xxxxxxxx


----------



## agate

Saffa77 said:


> Thanks for that called Dr Gorgy but he is on leave this week think I am just going to carry on with my Oestregen this week until I speak to him on Monday what do yous think? DOnt think an extra week is going to do me harm is it?


I did ask my clinic whether staying on estrogen for a bit longer could do any harm (because I was worried about stopping it earlier, even though they said it would be ok) - they said it was fine, and although I am pretty certain Dr G will say its fine for you to come off it now, it does seem safer to wait until you speak to him.

DND: I'm sorry I don't know. Hopefully one of the girls who has had the biopsy will be able to tell you. I know that docs always say it should be done just before your period starts (and you'd normally guess that this would be about 15 days after ov (bearing in mind that the positive LH pee-stick test can be 0-2 days before ov) - but I don't know how much leeway there is - I guess it depends on what the priority is for your particular biopsy - if there is a need to determine whether your lining is normally developed for a fully mature lining, then the test wouldn't be quite so accurate if you had it earlier - but I don't know how important the timing is if you are mainly testing for C or testing for uNKs. I've got a feeling bbm09 had similar dilemmas a few weeks ago - can you check her posts?

Regarding the address - couldn't you ring Dr G's receptionist?


----------



## DND

Agate, you are so helpful dear, thank you for your feed-back.   By the way, dr Gorgy will test for NKs.


----------



## tinks21

Hi everyone,
Agate - thanks for your comments re LAD results.  I will be sending Dr T an email to see what his thoughts are.  I appreciate your comments, thank you for taking the time.

Lois – you asked about whether anyone in Herts has had Clexane/Gestone.  I am in Beds, but I went to the GP today and she wouldn’t give me Gestone or Clexane, she said something about the NHS not prescribing Gestone at all – very sad as it is the most expensive one on my current list!!  Anyway, I managed to get prednisolone on an NHS script!  Will have to buy the expensive ones myself I guess!

DND – I had my biopsy just before AF arrived, around about day 27 ( I have a 28-30 day cycle).  If you ovulated on the 10th then you would perhaps be on day 23-25 (give or take) on the 19th so you may need to wait a couple more days, but perhaps  the 19th would be fine,  Dr G just told me to make an appointment just before my period.  It depends on how long your cycle normally is I suppose.  As Agate mentioned in her post, perhaps you could ask Dr G’s receptionist.  Sorry I can’t be much more help.
I hope everyone else is okay – must get to bed!  I have had a hectic day which started before 5am!
Tinks xx


----------



## Bling1975

Hi all,

I am trying to plan my retest at the moment but I have a question to the lab. Does anyone have the telephone number och e-mail to someone there who knows about sending the blood to USA? 

I can't get hold of Dr G and I just need to know if they can draw blood on a wednesday morning and still have time to send it.


----------



## Chicky Licky

Bling, You could try emailing Lorraine at RFU direct.  [email protected]
I think Wed might be cutting it a bit fine though. Usually blood is sent on a Mon or Tue for next day delivery.

xx


----------



## agate

If you are sending blood via the UK you want to speak to TDL's referrals dept

http://www.tdlpathology.com/

Most weeks TDL do a fedex run to chicago just after lunch on mon/tue/wed - but it is worth calling them to double check their fedex plans for the week you want. This means you can usually have blood drawn at TDL in London on mon/tue/wed am or you can have blood drawn elsewhere and posted for next day delivery by 9am on a mon/tue.

If you are fedexing direct to the RFU in Chicago their details are here:

http://rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx

The crucial bit is that for bloods that need the cells to still be alive e.g., LAD and NKa, the blood has to arrive at RFU in Chicago during the daytime on a weekday and can't be older than 48 hours old when it arrives. You can look up the test requirements for each test on their website.

his post contains an unconfirmed link/information and readers are reminded that fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## deegirl

Bling - hope you get sorted, Dr G is away this week, just to let you know.


----------



## Desi

Bookmarking.


----------



## Bling1975

Thanks agate and deegirl!

I tried to call today but I think it was lunchtime in London and then my work just got crazy. Will try again tomorrow.

Tickets for 2 return is less than £50 incl taxes from Stockholm in may so it is much cheaper and easier to travel than to send them. And I just love London.


----------



## Peanuts

Hi girls

Just a quickie to say hi and give you all a big hug!   
Back for another baseline scan tomorrow, so will let you know how I get on, could really be doing with some happy hormones by now!!

Ells - congrats on your fab news, sooo pleased for you      Has it sunk in yet?

Take care
Dxx


----------



## sarahh

Hi all, sorry not been on for ages, have been watching from afar tho!  Ells, congrats hon you must be so over the moon with twins.  

Will post more later about what is going on with me but having a bit of a problem this morning and as Dr G is away and my GP is as much help as a chocolate teapot I thought I would see if any experts on here could help me (agate??!!)

I was due to take Humira yesterday (for the 1st time) but during the eve when I was about to take it, I really felt as though I have thrush developing (!) so thought I would get some meds for that today (I was thinking the Diflucan one tablet or whatever it is called) and find out from GP if I should wait a day or two for it to start clearing before taking the Humira (although I can't really afford the time to do that because as usual everything is on a tight time schedule again!)

So, do you think that thrush is likely to become worse if I take the Humira or as it is a yeast infection not a viral infection that the Humira wouldn't have any impact?  And should I take the pessaries (local treatment) for the thrush or the Diflucan (obviously absorbed into the system more as it is a tablet)??  

Any thoughts would be gratefully received!!!  And promise to post more later!  
PS I am still on the antibiotics for the latent TB wk 10, 4 wks to go!  Wonder if this is why thrush has hit, although been taking high strength probiotics?!

Also now thinking that I should have the latent C test after all the talk on here, but just had my period and would be stimming after next period with a bit of luck!!  What "sample" do the men need - did think that I might send off DH's sample - at least if he hasn't got it then it would seem I am less likely to have it! (i am guessing it is  a sperm sample not blood?) 

Thanks, Sarah xx


----------



## agate

Sarahh
I think if it was me I would want to treat the thrush first just in case... I think some kinds of thrush can be a side effect of humira so that implies that humira can affect your ability to handle yeasts/fungi.

Yes, thrush is definitely associated with taking antiBs because it can disturb the balance of healthy bugs - giving the unhelpful ones like thrush a better chance of taking over.  Natural yoghurt on a tampon is supposed to give your healthy bugs a step up.

Is it definitely ok to start the humira before finishing your TB Tx?  I assume you've had proper medical advice on that?

If you are not stimming yet, I'd probably take whatever thrush Tx is most effective.  I THINK diflucan is short lived in the body (half life is apparently about 30 hours) so if its only a one tab course, it will be gone from your body quickly.  Not sure how long it takes thrush to go, though but maybe the packet would give you some idea and that will inform you as to how long a delay this might result in, and whether there is likely to be any knock on effect on your Tx (or need to try and get a proper medical go ahead to push on with the humira in spite of the thrush purely to meet your timetable?)

There are lots of different C tests for blokes (urine, semen, uretha swab, rectal swab, serum antibody) but I don't know which is the most effective.  The most common one here is the urine pcr which is the one your GP would do or you can buy over the counter in boots and post off for the results.    You'd probably want to time it so that you do the menstrual blood test at the same time as he does his test.  However, bear in mind that most of the ladies who do get a positive on the menstrual blood test have been screened negative on the normal C test (and presumably their partners also screen negative on the urine pcr) - because the normal C test can only sample down at the level of the cervix, whereas the menstrual blood test is effectively obtaining a sample from the whole of the lining of the uterus (higher up), and the theory with C is that it can take up residence higher up in the tubes (where it causes tubal damage etc) and in the uterus so that it may only be detectable lower down when its in its early stages of infection or when the infection really flares up again. I THINK ladies are more likely to be at risk of having C higher up if they have a history of ectopic, PID or tubal damage because then clearly they know they probably have been exposed to C or gonorrhea at some point and it hasn't been cleared quickly enough to stop it ascending up as high as the tubes.


----------



## LV.

Hello girls,

I hope you don't mind me joining you ladies to try and get a crash course on immunes!  Sher wanted me to get some immunes done and I ended up getting the whole lot done with Dr G. I went today and had a fluid ultrasound as requested by Sher and got some of my immunes results, unfortunately Dr G is away so I haven't had them interpreted but I'm guessing the orange highlights all over them mean there are some out of normal range! I've done a bit of Googling and can see they are off kilter but I'm trying to get my head around which results mean what and what treatment I'll need and if there's any hope even trying again with my own eggs or is we should skip Sher and go to DE.

I'm hoping you very clever gals can help me interpret this rather daunting minefield, my results are:


NK Assay
50:1                            27.7
25:1                            21.1
12.5:1                        10.5
IgG conc 12.5 50:1        16.1
IgG conc 12.5 25:1        14.7
IgG conc 6.25 50:1        21.8
IgG conc 6.25 25:1        14.8
%CD3                          87.8
%CD19                        11.2
%CD 56                        2.7
% of CD19+ cells, CD5+  3.6

NK Assay w/ intralipid/ NKT

50:1 w/intralipid 1.5mg      8.9
25:1 w/intralipid 1.5mg      6.6

Leukocyte Antibody detection

Floweytometry              Negative
T-cells IgM+                  1.0
T-cells IgG+                  1.0
B-cells IgM+                  23.1
B-cells IgM+                  7.3

TH1:TH2 intracellular cytokine ratio

TNF-a:IL-10 (CD3=CD4+)      36.6
IFN-g:IL-10 (CD3=CD4+)        9.9

I still have a bunch more to come back but the results won't be back until next week but these don't look normal to be starting with me thinks

Any advice very gratefully received.
Thanks muchly

LadyV xxx


----------



## agate

LadyV:  I'm trying to get my head around which results mean what and what treatment I'll need and if there's any hope even trying again with my own eggs or is we should skip Sher and go to DE.unfortunately some immune issues will still affect your chances of successful implantation even with DE. DE will potentially give you better quality eggs that have more of a chance at implantation/healthy pg but if you have significant NKa, TNFa or thrombophilia problems they will still make it tricky to get/stay pregnant even with fabulous quality eggs - unless you also treat the immune issues
NK Assay
50:1 27.7 this means that your NK cells kill quite a lot more than the target level of 15% of specimen cells in the test tube - its likely to mean Dr G and Dr are both going to prescribe steroids. Both Dr S and Dr G would probably suggest ILs drips as well (Dr G is more likely to say ILs+IVIG drips) to try and get this down before ET
25:1 21.1
12.5:1 10.5
IgG conc 12.5 50:1 16.1 in a test tube, adding a solution of IVIG to your NKs does help to suppress their killing power quite well
IgG conc 12.5 25:1 14.7
IgG conc 6.25 50:1 21.8
IgG conc 6.25 25:1 14.8
%CD3 87.8 (your total T cells as a proportion of total lymphocytes is slightly high)%CD19 11.2 (your antibody producing B cells are also slightly high)%CD 56 2.7 (your proportion of NK cells is not high - although they do have elevated killing power - see above)
% of CD19+ cells, CD5+ 3.6 (the antibody producing B cells associated with auto-immune antibodies are not high)

NK Assay w/ intralipid/ NKT

50:1 w/intralipid 1.5mg 8.9 (intralipids in a test tube is a bit better at suppressing your NK killing power than IVIG)
25:1 w/intralipid 1.5mg 6.6

Leukocyte Antibody detection

Floweytometry Negative
T-cells IgM+ 1.0
T-cells IgG+ 1.0
B-cells IgM+ 23.1
B-cells IgM+ 7.3 (you'd like this to be at least 30 and preferably over 50 - Dr G would suggest LIT to bring it up probably, but Dr S doesn't favour LIT)
TH1:TH2 intracellular cytokine ratio

TNF-a:IL-10 (CD3=CD4+) 36.6 (your TNFa proportion is elevated - Dr G would suggest humira preconception, plus steroids, plus ILS/IVIG. Dr S doesn't use humira so he'd probably stick with steroids plus ILs for you. Your egg quality might be improved after immune Tx (because elevated TNFa is unhelpful for ovarian response and egg quality) but it might not, and according to Dr Beer, it can take up to 6 months after immune Tx is started to bring TNFa down to show an improvement)IFN-g:IL-10 (CD3=CD4+) 9.9

So it looks like you are still waiting for your DQa and your inherited thromobophilia results.


----------



## mag108

just bobbing on to say hi to all you lovely ladies
x


----------



## vw22

Hi everyone, I was wondering if anyone had any words of wisdom for me at this stage?

I have just tested at home, negative, (OTD Friday) mainly because I am finding it too difficult to get IVIg here in Spain so I thought I might have to plan a last minute trip to the uk, so thought I had better get prepared. I appreciate the test could be wrong etc etc etc but I have been here too many times before not to be realistic.

Firstly I think the clinic here will only recommend DS as well as DE going forward. I know they have no idea why things aren't working and I really hoped the immune treatment for the first time this time, would be the answer. DP karotype etc is normal but know they will push for donor sperm going forward – I am seriously bringing their statistics down!

We havn't had the LAD or DQ x2 test done yet (DP away working). If we go to DS and DE, would there still be any necessity for this test anyway?

I know my issues with immunes might still mean all the drugs for donor DS and DE too but is there, in anyones experience, anything I could go without if i went that new route? 

Would it be mad to continue the pred, clexane and just try naturally for a month? Thats a bit of far fetched question but certainly something we haven't tried before!

Has anyone on this thread been at this stage and been successful when going from only DE to DE and DS.

I am seriously finding it hard to find a thread where I fit in now!!! I really don't want to give up, genetics or no genetics, so would appreciate any comments.

Thank you so much,

vx


----------



## agate

vw: hope the test changes - presumably you tested this morning using first urine (more concentrated) rather than this evening?

I can't answer most of your questions because I don't know.  but on the LAD/DQa front - if you are having DE then it still applies in the same way as for OE - but once you move on to DS, then unless you know the donor's DQa, it would be impossible to get a meaningful LAD test done (you'd need to get the blood of someone who has the same DQa as the sperm donor to do the LAD test). Without that, you wouldn't know if you need LIT or if its worked to raise your LAD levels to recognise the paternal DNA.  But hopefully, if DQa has been causing a problem when you pick a sperm donor, you'd be pretty unlucky to choose someone who had a similar DQa to your DH.

I don't think its mad to try naturally if there is a chance (i.e., so long as you normally do get fertilisation with IVF with your eggs and your DHs sperm and your tubes are open).

Do the spanish clinics insist you have DNA fragmentation done on the sperm?


----------



## vw22

Thanks Agate, I thought that would be the case about DS and the tests, so thats good to have confirmed. As far as I know we have never had DNA fragmentation testing in any of the clinics on his sperm...will go look that up now to see what it is. He has never had supersperm but always good enough to fertilise well, so no-ones ever questioned it...


----------



## LV.

Thanks Agate, you seem like a very clever lady indeed.

Gutted to say the least, don't suppose I'm the first to feel that. DE being a possible problem too makes my heart sink. Gggg... this journey is so rubbish 

xx


----------



## agate

ladyverte said:


> Gutted to say the least, don't suppose I'm the first to feel that. DE being a possible problem too makes my heart sink. Gggg... this journey is so rubbish
> 
> xx


its not all bad - there are ladies on the pg with immune thread who are succesfully pg with DE - but that only managed it once they got their immunes treated too... better to have more info and fix the problem than more dissapointments in my view.

Let's wait til you get all the tests back and then get Dr G's and Dr S's views and then you will know much better where you stand and what you need to do than you ever have before.


----------



## Desi

Dear All,

Hope you are all well?! Keep the hope and faith!
I hope some of you might be able to help with some remaining questions as I have finished the planning for the next couple of months (oh dear, what a job..) and noticed that there are still some things not very clear.

I will first have my FET before my final 2 fresh IVF attempts.

Questions:

1:
Dr G. told me the following:
Start with cardio aspirin 1 month before you cycle.
Is this the same for a FET cycle?

2:
In my specific case it would mean I need to take the cardio aspirin during my 2 LIT's and 2 Humira shots, does that not interfere with each other?

3:
He also told me start with Clexane 40mg before EC and with 60mg after EC.
On which CD do you start this in a fresh IVF cycle?

4:
Am I right that if you have a FET you do not need to start with 40mg Clexane, but you start straight away with 60mg after the ET?

5:
How long average could the positive effect last of Humira?

6:
You should not start with Humira if you have a virus or infection?
Why not, does it make it worse?
When it is a simple cold virus, should you also not start?

7:
What do you advise to take to keep your body as healthy as possible during LIT, Humira and Prednisolone?
Probiotics, vitamines?

8:
Is there something you should absolutely not take during LIT, Humira and Prednisolone?

9:
Dr. G. said that once pregnant I should test my Progesterone and might need to take 3 Progesterone pessaries per day.
Don't you take Progesterone earlier? I usually had Pregnyl injections during 2WW.

10:
Dr G. also said I should start on CD5-6 with 25mg Prednisolone.
Is this the same in a FET and fresh IVF cycle?

11:
Dr. Beer writes on page 146 about Prednisolone and Dexamethasone. He states that some Dr's think that Dexamethasone is more likely to help ovarian stimulation and egg quality.
What are your experiences?
I think Dr. G. tends to use Prednisolone more?

12:
It also says in the book that 1mg Dexamethasone equals roughly 7mg Prednisolone.
Am I right in saying with a need of 25mg Prednisolone I need roughly 3,5mg Dexamethasone? 
Or is it not that simple?

13:
Do you take 2x 500mg extra calcium when you are on Dexamethasone or Prednisolone?
I have also read this advice somewhere in Dr. Beer's book.

13:
Disadvantage with Dexamethasone might be that it is more difficult to ween off?
Although Dexamethasone also comes in very small doses.

14:
Dr G. told me that it was not necessary to ween off Dexamethasone/Prednisolone if you start on CD5-6 and you stop once your AF arrives after 2WW.
What are your experiences, is this true?
I thought I sometimes read on the FF that ladies already needed to ween off after 2 weeks of usage? 

15:
I will have Intralipids whilst on Prednisolone, this does not negatively interfere?


Sorry for all these questions, but I think some of you have (unfortunately) so much experience with this, that you might be able to help.
Your replies will probably also help others again.

Many thanks, all the best to you all!

Desi.
Xxx


----------



## agate

Desi

I will first have my FET before my final 2 fresh IVF attempts.

Questions:

1:
Dr G. told me the following:
Start with cardio aspirin 1 month before you cycle.
Is this the same for a FET cycle?  I THINK so.

2:
In my specific case it would mean I need to take the cardio aspirin during my 2 LIT's and 2 Humira shots, does that not interfere with each other?

3:
He also told me start with Clexane 40mg before EC and with 60mg after EC.
On which CD do you start this in a fresh IVF cycle?
I THINK its day 5/6/7 of stims (depending how quickly you normally respond and therefore your best guess at when EC will be).  then you stop the lower dose on the day you take your trigger shot (e.g., pregnyl) and then restart on the higher dose the day after EC (as long as you are not still bleeding a lot).
4:
Am I right that if you have a FET you do not need to start with 40mg Clexane, but you start straight away with 60mg after the ET?  Not sure - I would have thought you would do similar as for fresh - i.e., start on one those doses 7 days roughly before ET.

5:
How long average could the positive effect last of Humira?  I think its difficult to say. It takes up to 6 months to completely clear out of your system, but when patients have to take it for severe (non fertility) auto immune disorders, they sometimes need to take it every week or every 2 weeks.

6:
You should not start with Humira if you have a virus or infection?
Why not, does it make it worse?  Humira will make it more difficult to fight off viruses (and some bacteria) - so its not recommended to start it if you know you have something already.
When it is a simple cold virus, should you also not start?  I would guess you should ask Dr G for advice if you are not well on the day you are due to start - the difficulty will probably be in being certain that is only a simple cold - until you're getting over it, it may be hard to be absolutely sure what you've got.

7:
What do you advise to take to keep your body as healthy as possible during LIT, Humira and Prednisolone?
Probiotics, vitamines?  Most of us are on a pregnancy multivitamin like pregnacare.  Some ladies take other supplements like extra vitamin D3, sometimes omega 3 fish body oils (not much if  you are clexane - they thin the blood), sometimes tumeric/curcumin. Some docs suggest extra folic acid if you are on prednisolone but not all docs do.

8:
Is there something you should absolutely not take during LIT, Humira and Prednisolone?  You should avoid antihistamines, steroids (including prednisolone) and humira for 1 week before and after LIT - they can stop LIT working as well.  Some antibiotics apparently stop LIT from working but I do not know which ones.

9:
Dr. G. said that once pregnant I should test my Progesterone and might need to take 3 Progesterone pessaries per day.
Don't you take Progesterone earlier? I usually had Pregnyl injections during 2WW.  Normally on fresh ivf you take progesterone from EC onwards and with FET for a few days before ET.  Maybe it can be left until later if you are using pregnyl injections instead to sustain the lining.  I don't know.

10:
Dr G. also said I should start on CD5-6 with 25mg Prednisolone.
Is this the same in a FET and fresh IVF cycle?  I would THINK so.  Because you'd need the steroids in your system for at least about a week before ET to give them chance to get the uterine environment more friendly.

11:
Dr. Beer writes on page 146 about Prednisolone and Dexamethasone. He states that some Dr's think that Dexamethasone is more likely to help ovarian stimulation and egg quality.
What are your experiences?
I think Dr. G. tends to use Prednisolone more?  Yes.  I think Dr G does.  Dr S also prefers dexamethasone but Dr G uses pred.  I'm not sure if this is because its safer to stay on pred for longer into pregnancy than dex.

12:
It also says in the book that 1mg Dexamethasone equals roughly 7mg Prednisolone.
Am I right in saying with a need of 25mg Prednisolone I need roughly 3,5mg Dexamethasone? 
Or is it not that simple?  There are lots of online calculators that calculate the equivalents of different steroids.  Just google 'steroid conversion calculator' etc

13:
Do you take 2x 500mg extra calcium when you are on Dexamethasone or Prednisolone?
I have also read this advice somewhere in Dr. Beer's book.  I take this for the clexane in any case. 

13:
Disadvantage with Dexamethasone might be that it is more difficult to ween off?  I THINK they are both the same for that. 
Although Dexamethasone also comes in very small doses.  The tablet sizes are roughly equivalent though bearing in mind the conversion factors. 

14:
Dr G. told me that it was not necessary to ween off Dexamethasone/Prednisolone if you start on CD5-6 and you stop once your AF arrives after 2WW.
What are your experiences, is this true?
I thought I sometimes read on the FF that ladies already needed to ween off after 2 weeks of usage?  The normal medical advice is that you don't need to wean off steroids slowly if you've been on them for less than 3 weeks (but it does depend on whether you've been on and off them a lot already).

15:
I will have Intralipids whilst on Prednisolone, this does not negatively interfere?  No, I don't think these interfere.

I hope my guesses help you, but you really should double check with Dr G to be safe.


----------



## ells

Hi ladies,

hope you are all well   .

Desi just wanted to add to Agate's reply, on your question 6. I was told by both Dr G and my crohns doctor that if I had a cold but had no temperature it was fine to continue with the humira.  I had a slight sore throat but had not complications as a result. 

Ells


----------



## Desi

Dear Agate and Ells,

Many thanks for your super fast replies! So much appreciated!

What dose of Vit D3 do you take per day?
Is the 2x 500mg calcium (to take during Clexane and Dexamethasone) the same as vit D3?

Desi.
Xxx


----------



## agate

Desi: I take 25 mcg (1,000 IU) of D3 per day, but I don't get outside much - you tend to need more if you don't get outside/are dark skinned/wear sunscreen/cover up a lot.

Calcium is not the same as vitamin D3. Calcium is an inorganic mineral.  D is a vitamin and is organic (I think).


----------



## Chicky Licky

I'm on both Clexane and Prednisolone at the mo. So should I be taking calcium and vit D3? x


----------



## agate

taking Ca is probably not absolutely necessary if you are only on clex for a short time, but hopefully you will be taking it for... 8 months  ... so maybe get some Ca?  If you find the cheap stuff (Ca carbonate) makes you feel uncomfortable, you can find Ca citrate in some health food shops which costs more but doesn't cause constipation because its more digestible.

general point on Ca though - if you are told to take doxycyline (e.g., around EC) either skip your Ca tabs until you are finished or take them at lunchtime and take the doxy at either end of the day.  (Ca stops you absorbing doxy).

The D3 is mainly to try and balance your immunes generally rather than anything particularly to do with clex or pred (although it does help you absorb Ca)- its more likely to be an issue if you are dark skinned/cover up/wear sunscreen/its winter/you live in scotland/don't go outside much.


----------



## Chicky Licky

Thanks for clearing that up for me Agate!   xx


----------



## deegirl

Hi ladies, just wanted to wish everyone a lovely weekend.  Long may the sun shine!


----------



## JasmineX

Hi Ladies

I hope you don't mind my jumping onto this board to ask a question.

I have my first appointment booked to see Dr Gorgy, a week on Monday and would like to know what to expect and what to ask...

Me and DH have been TTC for over 2 years, and just had a our first IVF at the Lister - got a BFN on OTD 3 days ago. We have a follow up booked at the Lister, but I don't want to through any more money at IVF before getting immune tested. The fact that we have never had a BFP makes me think there might be something there.

(I did get tested for Lupus and was found to have high cardiolipin antibodies, so have been on aspirin for a couple of months)

Also, is it possible to have immune treatment but try naturally? I'm thinking why do we need IVF it its just (hopefully) my immune system which is the problem?

Finally, how expensive are the immune drugs - any ball park range or guidance on say, cost per cycle would be appreciated!!!

Many thanks and hope you all have lovely weekends



Jasmine
XXXXX


----------



## Lois

Hi everyone & thanks to those who replied to my query over the past week. 

Anna, my GP does know about my blood clotting disorder. When I saw him again, I said that I was disappointed that he wasn't prescribing clexane in particular since I am now pregnant and my NHS Consultant had written to him last summer and said I should be on it if I get pregnant again (I'm already on it which is the main thing - but it would be even better to get it on NHS prescription). He just said that he needs to hear it from her again! He's giving me such a hard time. In the end I rang the PCT and they contacted my GP Surgery and they had a meeting to discuss it. They have referred me to my Consultant early ie next week and want me to wait to see her. They are also writing to me on this issue - so I will have to wait and see what the letter and my Consultant says. I will see if Dr G can help me out too. I just find been given the run around annoying since I know some GP's are prescribing clexane & gestone without question to pregnant ladies with blood clotting disorders.

2 babies, good luck asking your GP for your meds. I hope that you get a better response than me - can't be worse!

Tinks, I know that some FF's who are pregnant are getting clexane & gestone on a NHS prescription and that's why I asked the question - but its prescription seems to be inconsistent. 

Ells, Many Congratulations   

Shellie, Congratulations on being PUPO    . Take care of yourself and your precious cargo. Got everything crossed for you.

Saffa,  Good luck weaning yourself of the meds once you've been advised by Dr Gorgy.

Jasmine, it will be interesting to hear what Dr G says. But it's well worth considering getting thoroughly checked out before putting yourself through any further emotional and financial expense of more IVF and cut the chase by being able to rule anything out or treat any issues that you or your DH might have. So I think it's a good move going to see Dr Gorgy & I wish you good luck.

Love to everyone

Lois xxxx


----------



## Saffa77

Ladies

Agate/cozy/lalaby or any one else that can help.... as you know dr Gorgy is back on Monday for a weeks holiday and I will be 12 weeks on MOnday - did you ladies start weaning off prednisolne then at 12 weeks??  I have a phone consult only on Wednesday with Dr G as he is so busy MOnday and Tuesday can I just start the weaning off from monday?  Cant wait to get off the steroids to be honest as its really interuppting my sleep and makes my heart race.  Or do I need to speak to Gorgy first  according to most you ladies you all weaned off from 12 weeks am i right?  I have already stopped my estrogen.  Then next will be the gestone but will speak to Gorgy.  Am also waiting for my NK retest results - so scared to get those back as not keen for another IVIg will go for intralipids next.

Sx


----------



## ratsy

Hi jasmine37

I had my immunes tested with DR G just over a month ago 

My consultation and blood test came to £1,720 

And ive calculated my immune drugs will come to around £ 5,000ish im having LIT ,IVig IL Humira Pred , Clexane but thats my immune tx everybody different yours could be less or more depending on your test results 

Then if you get a bfp it will be more tests and drugs but when you see that big fat line dont think youl care about the extra money 

Hope this helps you 

R   xx


----------



## mag108

am really sorry that those of you booked for LIT Tues are having to contend with the volcano ash disrupting everything.
And appts for Dr G who is stranded in Italy I believe. I sincerely hope it all gets sorted soon.

What a crazy year its been...My 3 LITs werent without drama. Jan = Snow (got out and back by sheer luck). Feb=Strikes in Athens and March - BA strike. Kinda shakespearean.

Today I got my AF finally after 6 wks so C test sample will be Fedexed to athens on Monday, goodness only knows if it will go anywhere with the all the volcano action! NHS Consultant wrote today and there is no hope of an earlier hysteroscopy to remove septum

my choices are:
1. Do it hysterocopy privately abroad in Athens.
Pros: I will get it done in 10 days-2wks so can cycle sooner. Have had 3 LITS and want to cycle sooner as otherwise the benefit is lessened. 

Cons: (£1.5k plus hotel/flights). 

2. Wait til July and have hysterocopy.
Pros: no financial cost
Cons: The wait. Waste of 3 LITS's? Plus, I have been been pregnant last three years in July so I want to try and cycle then.

Before I decide I wanted to check out what you ladies think.


I


X


----------



## JasmineX

Thanks very much for the info Ratsy and Lois.

Wow, didn't realize the treatment is so costly! Still I think its important to get the tests done, and I can make a decision after that....

Jasmine
XXXXX


----------



## Cozy

Mag108,

£1.5k to get a hysteroscopy done seems a bit expensive. I had a saline hysterography and hysteroscopy privately for that price in Manchester. Did you contact the secretary of the Dr that did mine? He would fit you in very quickly. Does your septum need to be removed? When mine was checked I was told it wouldnt prevent me from getting pregnant so he didnt remove it, and it hasnt caused any problems.

Personally, I would check out private clinics locally and find out their prices and when they could fit you in and get it done ASAP, or if it does work out cheaper to go to Athens then go there and get it done.

You'll be lucky if your C sample gets out on Monday, the way things are going. I've had flights for the last 4 days cancelled, so we have decided not to go away this week now.

I hope you manage to co-ordinate things so you manage to cycle when you want to

Cozy


----------



## ells

Morning ladies,

I hope you are all well and enjoying this lovely sunshine. I am sorry that those of you that are supposed to be heading out to Athens on Tuesday are having to deal with this extra stress sue to the ash cloud, I really hope that things sort themselves out pronto.

Mags, have you spoken to Dr G's partner Dr E I think some of Dr G's other ladies have seen him for that. The other alternative would be to try Poland - a heck of a lot cheaper, there are clinics in Warsaw that would do that - there is one called Novum, Invimed and Invicta (northern Poland) - they have their price lists on their website too. This is the link to Novum http://en.novum.com.pl/index.php?p=k_home - there price for an operative hysto is approx £500 - exchange rate roughly 4.50 zl to the pound. The doctors all speak very good English and they do not appear to have waiting lists. Good luck hunni.

Ladies, I am due to go up and have my nk retest tomorrow but I am wondering if it will be a wasted trip, how will the bloods get to the RFU due to the flight ban? I imagine it is pretty time critical too so they cant hang on to them? I am going to phone Arkville in the morning to see what she says but just wondered what your thoughts are on it?

Thank you as always,
Ells


----------



## agate

Ells: until there are planes flying from london to chicago, I don't think any chicago tests will work? NKs, TNFa and LADs all need to get to chicago within 48 hours of the blood being drawn. All those tests rely on the white cell population being still alive when chicago test them. So the blood has to be sent speedily and can't be refrigerated.

You can check the RFU manual here http://rosalindfranklin.edu/DNN/home/CMS/Microbiology/CILab/CITests/tabid/1311/Default.aspx

but I can't see much point in having blood drawn tomorrow unless there is an expectation that planes are going to start flying properly on mon or tues at the latest. I did call TDL on sat and they confirmed that bloods that normally go overseas can't at the moment so of course check with Akbil but I don't think you are going to get good news. Sorry. I just hope it all gets sorted soon. Even if you sent them ferry and overland to the only place in europe where I THINK they do an equivalent (athens), I don't think they'd arrive fresh enough?

I would GUESS that if you can't get the retest done within about 7-10 days of your last drip because of this mess, Dr G might suggest skipping the retest and just having the next drip without it, but I'm not sure.

Do you know what happens if Dr G is away and we need urgent prescriptions on mon (assuming he can't get back from sardinia another way - presumably he would be trying to come back overland and ferry)? Akbil said she would get another doc to sign them. Do you think that's Dr E and do you think he will be in every day (because I've never seen any sign of another doc at FG&A except Dr G when I've been there)? Getting a bit stressed about this now, cos my restest was shocking and I think I need another drip asafp, as I'm really worried now that my sudden, huge, surge in NKa is hurting LO.


----------



## ells

Thanks Agate.  I will still ring Arkville in the morning and double check but thats what I was thinking would happen.  I am happy to go with a 'blind' drip for my next one - I imagine that will be in 2 weeks time as tomorrow will be 10 days since my last one.  
On the prescription - Dr E does sign them in Dr G's absence and he does the drips too.  Dr G told us this last time we were there as we told him he wast allowed to go away on holiday for the next 7 months   .  He also said that he tries to make sure that he has access to a fax and the internet when he is abroad so he can pick up urgent issues for his patients.  I hope that helps. 

Ells


----------



## Cozy

Hello ladies,

Agate, I would imagine that Dr E could write up a script for IVIg if required. He can always speak to Dr G on the phone about it. Speak to Akvil and get her to arrange it.

Ells, if your timescale for retesting has run out before flights start again I wouldnt worry to much about it, whatever the result you would be having another IVIg or IL anyway wouldnt you? I havent retested every month, I cant see the point and I believe the Dr George at Care doesnt retest at all. I doubt Dr G will be back from Sardinia in the next few days.

Hope everyone else is doing ok and enjoying the sun. I'm just starting to have a clear out and pack things up in my house. We put our house on the market and sold it the day after - we didnt expect that at all, so we are trying to find somewhere suitable to rent until we move to Spain next March. I've just sold all my dining furniture on Ebay... someone got a real bargain!

bye for now

Cozy


----------



## berry55

Hi girls,

I am also due to have blood taken tomorrow for LAD & TFNa... i'm thinking its a waste of time.... dont know what to do!?!


----------



## 3babies

Looks like everything is on lock down until this freight stand still comes to an end.
On a positive note, i guess it will give your tx more time to take effect 

check this site for regular updates www.nats.co.uk


2babies x


----------



## Cozy

Berry, 

I very much doubt there will be any point in you having those tests done tomorrow as it is unlikely that they will be going anywhere soon. It would be ok if they were ones that could be done at TDL, but unfortunately they are not.

I have had flights cancelled every day for the last 4 days and have been told we wouldnt be flying tomorrow either, so things are not looking good. We have now cancelled our trip completely.

It might be an idea to wait until you know flights are running again before you book another appt. Very inconvenient though I know.

B***y volcanoes!!

Cozy


----------



## berry55

cozy - thanks for the info.   XXXX


----------



## mag108

Agate:
I am sure Dr G's colleague Dr E is able to write px. I would be very surprised if Dr G doesnt ahve a contingency plan in place, he may not be able to fly but he can use the phone hopefully. Call Akbil tomorow I am sure she will help. I am so sorry you are stressed. big hug and try not to worry too much. Do you have Dr G's mobile cos you could call him on it first thing? I have it if you need it.X 

Cosy: thks, I did try but Lesley, but she was away for the Easter break when I rang, I assumed all the private clinics here would be the same (I was quoted £3500) I will try Lesley Monday. didnt know you were moving to Spain!

Ells, thks for your clinic advice, you are correct it is very good value there.
It is a pain all of these issues with planes not flying! Things that we just cant bargain for.   

Big garden action today now totally wiped!
Collecting menstrual blood today for C test. two samples !,  god only knows when that will get to Athens!

xx


----------



## deegirl

Hi girls - hope you've all had a good weekend.  This flight situation is causing us a lot of stress, hope it gets sorted soon.  

Agate - On the two occasions I've been in FGA Dr G has insisted that I see Dr E so that I can claim back money through BUPA and I've been told to come back after 4 on both days (Monday and Thursday).  So I'm not sure if Dr E isn't in before 4 or not.  Best to phone Arkville/Akville/Abkill (what IS her name??) first thing.  

Ells - I'm hoping you sorted hun, as Agate says maybe you can get the IVIG without a retest.  

Hope everyone else gets sorted and that the flight situation doesn't prove to be too stressful.

Dee x


----------



## ells

Morning ladies,

Well I spoke to Arkbill this morning and she said no point in coming up for the blood test today as they wont be going anywhere. She suggested I email Dr G and let him know whats what and ask him when my next drip should be. She said that Dr G has been picking up his emails regularly. So I have done this and am waiting for Dr G's reply.

Mags, the good thing about Poland is that you can get a coach out there - bit longer then a flight but at least you could get there within 24 hours.

Dee I hope Dr G says IL's!! I imagine I will have to have another drip in 2 weeks time just to be on the safe side. Hope you are doing well?

Agate, did you manage to get your px sorted out? When I phoned Arkbill this morning, she said that she had another doctor in looking after thinks - dont know if it was Dr E or not.

Shellie how are you doing hun? You are halfway through now, when's OTD? *THIS HAS WORKED YOU ARE PREGNANT*     

Hope everyone else is okay  .

Ells


----------



## Chicky Licky

Hi Ells - your piccies make me smile everytime - thanks so much honey!!!    

Yeh, I'm doing ok. This time, last time, it was all over so I'm counting my blessings that I'm still hanging in here! Maybe the Crinone Gel is helping. I'm 8dp 5dt today and temp was high still this morning so should be no sign of AF today. 4 days and counting until OTD on Friday. Today and tomorrow will be crunch days though as my cycle is usually 26-29 days and I'm day 27 today. Hold on there little bean! 

Cozy - well done you on selling your house in a day! - you must have a beautiful place. Good luck with your move to Spain next year - how exciting! Can I come! lol!  

Shellie
xx


----------



## Cozy

Hi Shellie,

I couldnt believe how quickly we have sold our house and we have had a lot of interest in it too according to the agents. Finding somewhere to rent is the tricky bit. We have property to sell in Spain, that certainly wont be sold in a day, it will probably take a year or two... never mind, more time for us to chill in the sun  

Not long now before you test, will you test early? I hope you get a BFP   

I started testing from 8dp5dt couldnt wait any longer.

Good luck

Cozy


----------



## Chicky Licky

Well, I did sneak a test on Sunday (7dp 5dt) but it was negative. I'll probably test again tomorrow. I can't wait either! I'm just really pleased I've got this far but I'm not out of the woods yet! No symptoms or anything so I'm still kind of feeling like it's not worked, but who knows! lol!    (oops, Ells is going to tell me off for not having PMA!!! he he! Sorry Ells! I'm trying!)

Ah, chilling in the sun with your little one will be bless - good for you honey!!! I'm really, really happy for you. 

Did you get a BFP on 8dp5dt then? 

Shellie
xx


----------



## Cozy

shellie,

yes I did get a BFP 8dp5dt, then I had a blood test done on day 10. I had 1 hatching blast and 1 expanding blast put back, they do tend to implant quite early I believe.

Dont give up yet, you tested early and everyone is different

Cozy


----------



## Chicky Licky

Yeh, ours was an early blast so though it would take a bit longer if it's going to implant. Wasn't put off by the negative anyway as knew it was early. Just couldn't stop myself!  

xx


----------



## Ourturn

Shellie - think it was Agate who said that it takes longer for hcg to build up with blast transfers, especially if its a singleton, so stay        

Anna x


----------



## Cozy

I dont know if I would agree with the above comment. Alot of people I have known use DE have had early BFP's if they have had hatching or expanding blasts, some at 6dp5dt. Mine was 8dp5dt. Though every person and every transfer and pregnancy are different, but I cannot say I have particularly noticed people using DE or having blast transfers having later BFP's than someone using their own eggs or not having blasts.

Cozy


----------



## agate

Cozy: I agree with you - if it is DE IVF then the HCG rise is more likely to be like a natural pregnancy - because the eggs are probably going to be statistically better quality than 'average' OE as OE eggs tend to come from older ladies.  Also, if the impact of very high hormone levels from stimms on the lining is a factor (and I don't think this is known), then it wouldn't be there on a donor (or a FET cycle). Additionally, ICSI is thought to be a factor in the rate of HCG rise apparently, as some studies have shown lower/slower HCG numbers with ICSI (compared to IVF) - which could either be because the embryo takes a little more time to recover from the minor trauma of being ICSI'd or maybe because it implies a more severe male factor issue than cases which can be fertilised with IVF - and therefore another minor embryo quality issue that might give IVF embryos a head start compared to ICSI'd ones.  I think I'm basically saying that it might take longer to show a rise, but it depends on a lot of factors, so it depends which group of IVF/ICSI patients are being studied... and none of should get pessimistic too early in testing for a bfp until we've given the embies a chance.


----------



## Chicky Licky

Thanks Anna, Agate and Cozy. I'll just hang in here a bit longer and hope for the best. Mine were OE and ICSI'd and an early blast at that, so we'll see anyway. 

xx


----------



## berry55

hi girls,

Hope everyone is well. 

shellie- keep up the PMA hun, your doing great!!!! xxxxx

What a day! WHAT A BLOODY DAY!!! lol i didnt get my retests done today- but i'm soooooo worried about it incase the humira has not worked and i have no time to do a IL drip b4 i need too.... or even if that LIT has not helped and i cant get bk to have it done again. I kinda feel like i'm going into this cycle a bit blind. I got a call from Boots to tell me my drugs had arrived... well all of the drugs but not the needles or syringes    just wanted to as if this is normal... the gestone... does it come in little amples? I have never had this b4. Also some clexane i was givin is in prefilled injections but others r just prefilled syringes... is that normal? Then [email protected] phoned me to pay for my stimming drugs... i am a bit shocked that my clinic have put me on 225mg of menopur!!!!!! i  have always been on 150mg....... i'm a bit worried. I think i'll prob burst! My DH had a bit of a rant at how much money we r spending with all of this extra tx and just made me feel really rubbish. He keeps telling me that this is all a waste of time.... i so hope i'm gonna prove him wrong!

xxxxxxxxxxxxxxxx


----------



## Saffa77

Hi all

Does anyone know if Dr Gorgy is back and if not can someone else write a prescription to [email protected] for a drip

Sx

Agate did you manage to get your drip?

Sx


----------



## Cozy

Hi Berry,

sorry your DH feels that way, it is a lot of money, but hopefully well worth it when you get your BFP.   

yes gestone does come in ampoules - 50 or 100mg.

225mg menopur is still a low dose - I was on 600mg. Your clinic have probably upped your dose to try and give you a better chance of success.

clexane should be prefilled injections/syringes with needle attached, not just syringes. i dont think they do them just in syringes. they have changed the style of the injections recently, you may have a combintion of the old style and the new.

Are you sure you cant do an intralipid infusion before you start.. when do you start?

If you have no time to retest before you start, then you have 2 choices. Postpone your cycle until you can or go ahead with the cycle anyway.

I didnt retest my LAD until days before I started my TX as the result would not have influenced my decision to go ahead anyway. I had my LIT, Humira, IVIg and Intralipids and started my TX without giving retesting more than a second thought as I didnt have time to retest.

Good luck with whatever you decide to do. My DH was a bit sceptical that it would work and now he says he wishes we had done the tests earlier and can see something for his money now.

Cozy


----------



## Cozy

Saffa,

I would think it highly unlikely that Dr G is back yet. I did read somewhere that someone had spoken to Akvil and she had said that there was another Dr taking care of things there, not sure if its Dr E or someone else. Give her a call

Cozy


----------



## berry55

Cozy-   thanks for ur help. I defo wont cancel my cycle as i have had postrap already so i do want 2 go ahead with it. The only thing i'm worried about is if i could have had a IL while stimming... is that even possible? Would Dr Gorgy let me do that just 2 b safe? or is it too risky? Dont really know what 2 do. My TFNa at the begining of immune tx was 57.6 after 2 injections it went down 2 44.0 and then i had a further 2 injections.... kinda feel like it could be anything now. My LAD was 23.6 b4 i had any LIT and i had 2 LIT's in athens with Donor LIT (due 2 4.1 match)  should i just CHILL out?? i prob should! Dr Gorgy has never mentioned IL to me but i'm sort of self diagnoising myself lol About the cleaxane...  most of the ones i have r just prefilled syringes... no needles. I think only 4 of them have the needles. 

xxxxxxxx


----------



## Chicky Licky

Berry - you can have IL's whilst stimming. I had a drip on day 6 or 7 then on EC day. Re Clexane, mine were 20mg and 40mg pre-filled syringes and they all had a cap on covering a needle on the end. Hope this helps. xx


----------



## berry55

my clexane are 20mg and 40mg.... the r big fat tubes with no needle... i think i need to phone boots about this. WHY OH WHY!!!!!!!!!


----------



## ells

Berry,  

your clexane does sound odd, I would definitely see what Boots have to say about it.  On the IL's, Dr G told me I need to have mine between days 6 and 9 of stims, I had both IL (day 9) and IVIG (day 7).  I am sure that you will be okay to start hunni, dont stress over it all though.    

Saffa, Dr G isnt back but Arkvil is able to get issues on px's sorted out with another doctor and Dr G is available via email - altough he hasnt yet replied to me - but hopefully tomorrow.

Shellie, you can do it hunni, there is no reason for this not to have worked!!!!  I never tested until 12 days post ET and to be honest didnt really even want to test then!!  You are doing really well - keep up the PMA      .

Hi to everyone else, hope you are all okay.

Ells


----------



## agate

Saffa77 said:


> Hi all
> 
> Does anyone know if Dr Gorgy is back and if not can someone else write a prescription to [email protected] for a drip
> 
> Sx
> 
> Agate did you manage to get your drip?
> 
> Sx


Saffa - Arkville asked Dr E to do it for me - so I can have on wed with [email protected] - phew! Couldn't discuss the situation with Dr G though (made a guess that he would say ILs given I'd had IVIG 7 days before the retest - so that's what I asked for - if its not enough, I guess I can have another IVIG as soon as I can check with Dr G), but feel a lot better after scan today didn't show any slowing in LO's growth.

It sounds like Dr G isn't in easy contact with Arkville and that he won't be back for a few days now. Tomorrow I think was supposed to be the meeting he was having hopefully to get his LIT licence - so I am assuming that might be delayed too?

Berry: clexane normally comes in prefilled syringes - some are bigger with a white plastic mushroom shaped head. Some are thinner and in a normal looking glass syringe. The two types are completely interchangeable so I guess you have some of each? They all have needles though.

There is something called a multidose vial - which is like a big ampoule that contains several days worth - and that one you do have to get your own syringes but Dr G doesn't prescribe that one, I don't think. Are you absolutely sure they are not prefilled syringes that you've got? If they are the big ones, they don't look much like syringes but they say prefilled syringes on the box and they have a grey plastic cap that covers the needle - they are all individually wrapped in clear plastic blister boxes with a white paper/plastic lid/base.


----------



## berry55

Agate is right! lol I have been to boots and they told me that there are needles in them they just look diff. Ohh i'm such a freak!!!!!!!! lol    

sorry girls! 

xxxxxxx


----------



## agate

nah... you are just panicking so much that you are forgetting to breathe... and you can't think straight if you are in a panic! 

breathe in... breathe out... repeat!


----------



## LV.

Hi girls, I have an appt with Dr G on Friday but they have asked me to reconfirm beforehand in case he's not back in the UK as he's been caught up with the ash cloud problems

xx


----------



## berry55

agate- can u please remind me to breathe when i am not! lol xxxx


----------



## agate

I was just about to get on a train, so that I could do that!  but then I got tired and decided I needed a nap


----------



## berry55

lol agate


----------



## ratsy

Hi girls 

Has anyone got any idea when DR G is back he was suppose to have the LIT meeting tommorow  

I was hoping to start next mth 

Goodluck shellie   

Berry - maybe your dh dosnt understand the immune tx properly mine gets confused so maybe thats why and all he can see is money going out of account , But when you get your BFP


----------



## Peanuts

Hi girls

What a nightmare everyone is having with the volcano!  Like Berry, I was suppose to retest TNF/LAD today, but will have to put it off til next week.

Berry - just realised that Agate has told you the same thing I text you about the needles being under the grey cap on the syringe.  They do look different to the normal syringes you use for Menupor, as they're spring loaded, so after you inject and pull the needle out of your tummy, the needle gets sucked up into the syringe, so you can't poke yourself!  Will hopefully CU at retest next week.  And do as Agate says - remember to breath!!    I've got a Natal Hypnotherapy relaxation CD if you'd like to borrow it?    

Agate - hope you enjoyed your nap hun    Glad scan went well and you've organised your next drip  

Shellie - keep up the PMA hun          Got everything crossed for Friday for you        

Ells - how you doing hun?  

Big hugs to everyone   
Dxx


----------



## ratsy

Ooops scratched leg and sent it too soon 

Ment to say when you get your bfp you can gloat then i told you so    i think its just men for you   

R x


----------



## agate

ratsy said:


> Ooops scratched leg and sent it too soon
> 
> Ment to say when you get your bfp you can gloat then i told you so   i think its just men for you
> 
> R x


My DH has a deep technical understanding of immunes and fertility. I heard him tell someone "her blood is all wrong". Ah... so that's it then.


----------



## berry55

agate- men are just from mars!!!!!!!   xxxxx


----------



## ratsy

Agate I love that one 

My dp same  

The best one was we were in DR Gorgys office other week and he was telling me results  and what meds il be on and he got distracted by akvil .And dp whispered are you getting all this down i said and you aswel you try ask some questions and  he raised his eyebrows and said  i havnt got a clue what hes on about      ahh bless


----------



## Peanuts

Agate - at least he's got that level of understanding!! My DH is hopeless, couldn't remember what the LIT was for, despite being there twice!


----------



## sarahh

Hi all, just popping back on after my little "Humira / Thrush" dilemma the other day!!!  I postponed the Humira till Friday and I did feel like the thrush that was going away came back again but seems to have improved today ( !).  In case anyone else has the same problem as me, I phoned my GP who had no idea whether I should take the Humira or not (!) & as i waited all day to hear that answer I had already decided my own plan - to take the fluconazole tablet (oral) so I went to buy it, only to get home, read the leaflet and find that my antibiotic to treat the latent TB was listed as one of the tablets that you shouldn't take at the same time!!!!  You can see how my day was going (this was all happenening at the same time as having 6 3 year olds in my living room!!!   !!  

ANYWAY, I took the pessary in the end and had another one two nights later and no one seems to think there will be any problem! 

Can't believe Dr G is stuck in Italy, any latest news on when he is likely to be back?  (how long is a piece of string).  I was hoping that I might be one of his first patients to have LIT next week (he told me he should get his licence by the end of last week).  Apparently Dr Armstrong is also waiting for his licence so no one in the UK is doing it at the moment ?


----------



## sarahh

sorry, my computer was doing that really annoying thing where I couldn't see the end of my post... 

as I was saying... 

My plan is to take the 2nd Humira on 30th April and Dr G said either have a paternal LIT 1 week after 1st Humira or 1 week after 2nd (but then that is going to be closer to stimms and then I may have the LIT too close to starting the pred??)  due to stop bcp on 4 May and start down regging on 5 May till 12 May then start stimms.  Surely if I have the LIT after the 2nd Humira then I can just take the bcp for an extra few days so i don't have the pred within 2 wks of the LIT.  I don't really understand how / when Dr G works out how long you stay on the bcp for?  Didn't I read on here that one lady  had been told by him to take it non stop till May or June??  

Also, if I started a bleed after stopping the bcp and send off a test for "C" to Athens, will I get the result before stimming??  (usually start a bleed within 3-4 days of stopping bcp)  

Agate, see you are coming on nicely with that bump now.  Are you still on rest?  

Has anyone heard from Choice recently?  Her EDD must be quite soon now?  

Ells, thanks for the info about the local acu, I really must try to call tomorrow and make an appt!  Still not got round to it.  Are you still on Cloud 9 with your scan result?  Although it is of course a very worrying time after all this tx.  

Well, hope to catch up a bit more often with you but forgive me for not making it on too often, I have a very busy little 3 year old who keeps me busy from dawn till dusk (well nearly) and by the time she is in bed I am ready for mine   

Take care all,  Sarah xx


----------



## agate

sarahh said:


> My plan is to take the 2nd Humira on 30th April and Dr G said either have a paternal LIT 1 week after 1st Humira or 1 week after 2nd (but then that is going to be closer to stimms and then I may have the LIT too close to starting the pred??) due to stop bcp on 4 May and start down regging on 5 May till 12 May then start stimms. Surely if I have the LIT after the 2nd Humira then I can just take the bcp for an extra few days so i don't have the pred within 2 wks of the LIT. I don't really understand how / when Dr G works out how long you stay on the bcp for? Didn't I read on here that one lady had been told by him to take it non stop till May or June??
> 
> Also, if I started a bleed after stopping the bcp and send off a test for "C" to Athens, will I get the result before stimming?? (usually start a bleed within 3-4 days of stopping bcp)


I think the lady who was told to take the bcp continuously.... this was to try and suppress her endo a bit.

it normally is fine to take the pill for a bit longer in order to schedule your cycle for convenience - so hopefully Dr G will be ok with that. some ladies can find that the pill does blunt their ovarian response but its a very individual thing - and it normally just means you need to stim for a bit longer.

it sounds that once your C sample gets to athens then it will be turned around in a couple of working days - but the various methods of getting the sample to athens seem to be a bit hit and miss - with some samples getting there no problem and others going missing in the post etc

You might want to double check your bcp/bleed plan with locus medicus (the people who do the test) because I think they might have told another lady that there might not be as much tissue in the AF sample from a bcp withdrawal bleed compared to a natural period, but its probably best to check with them yourself.

haven't heard from choice4 in a while - I hope she is ok too.

No, I'm not on rest anymore - but I do get tired easily still so I nap a lot still - and tbh, I don't do much when I am awake!


----------



## Desi

Dear Ladies,

This is a reply I had from Dr. G tonight by email:
The paper application in UK has been accepted.  We are waiting for the Authority to inspect the lab and finalise the licence hopefully in the near future.

Sounds close, but the Vulcano is in the way now...........

I did not have any replies on my request for info on LIT in Cairo, so just thought of asking for it again here, just in case if somebody has had LIT in Cairo and some experiences to share with us or just any info on LIT in Cairo is welcome.

Take care.
Desi.
Xxx


----------



## Saffa77

Hi ladies

Wow this volcano story is really causing a lot of havoc isnt it.  Good luck to all waiting for drips, treatment etc etc.

As for me am really happy - glad i went for the IVIg in the end got my retest results and they as follows:

NK assay

50:1 - 10.4%
25:1 - 7.1
%CD3 - 89% - is slightly high 85 should be the limit - but this is not too serious am I right?
%CD19 - 5.1%
%CD56 - 2.2% - so happy last time it was 30% so with one IVIg it has gone from 30% to 2.2% never thought it would go down so much!!!! 
%CD19+5 - 5.9%  also has gone from 16% to 5.9% so happy.

Spoke to Akville this morning who said that she had spoken to Dr Gorgy who said I will need a drip next week?  But if the results are good do I still need another drip?  Am hoping an intralipid will do?  what do you think ladies how does it work do you need 2 good results and then the drips slow down?  It will be 4 weeks next week since I would of had my IVIg is this ok?

Also another thing Dr Gory says I need to phone him next week to discuss the drip and am needing to speak to him about the gestone when can I stop these I am 12 weeks and still on them should I wait till I speak to him or just stop them now at 12 weeks decisions decisions wish I could speak to him now.

Sx


----------



## Chicky Licky

Well ladies, it's a BFN from me. AF showed up today, 3 days before test date. Totally gutted but half expected it. 
It's a little wierd though as my temp is still high so might try and get an HCG test done to find out what's going off.

Planning a tandem cycle next in Cyprus after getting the C test done. Hope it will be ok as heard the clinic is on the Turkish side and my DH is half Greek Cypriot. lol! 

xx


----------



## 3babies

Oh ShellieG,

I'm sorry to hear your news. I would still do the HCG test as the same happened to me on my last cycle. Period came 7days after ET so i thought it was a BFN & so i stopped all meds & never tested my hcg or p.o.a.s 
I thought it was over & a bout a wk later something told me to do a pee stick using a clear blue digital & to my surprise i got a +
Altough it was short lived. The human body is such a complex yet amazing thing 

Wishing you both all the best & got everything crossed for you hun 

2babies x


----------



## agate

my af came but I was still pg. don't stop your meds til you are absolutely sure, Shellie.


----------



## ells

Shellie,   definitely get your bloods done as you just never know.   

Saffa, I emailed Dr G about gestone and pred yesterday and he replied last night, you might want to try that.  For me he told me I stop the gestone at 12 weeks and wean off pred at the same time.  Great retest results though hun - when is your next scan?

Sarah, I told Qing you will be phoning about acu - she is waiting for your call hun   .  She is lovely and very very hot on fertility and tx.

Hope everyone else is okay.
Had a bit of scare last night   , went to the loo and wiped and had a little bit of pale brown cm panicked for about 20 mins but then calmed down, fortunately had nothing since so am hoping its just a bit of irritation from the pessaries as I am a little sore down there.  The nurse thats been doing my gestone jabs is going to check my urine to rule out infection, but she told me not to worry about it.  I havent had any pain other then what I have had all along so am not stressing about it.  Needless to say, however, I didnt sleep brilliantly last night   .  My acu lady told me to let my clinic know, which I have done and am just waiting for a call back.  Got one week until our next scan so not tooo long to wait.  

Ells


----------



## Chicky Licky

Thanks Ells, got an HCG blood test booked for Friday, just to dot the i's!!!


----------



## Saffa77

thanks Ells think will try email him then what is the email address?  Ells did you also have high CD19+5?

Sx


----------



## ells

Shelllie, At least you will know definitely sweetie.  

Saffa - [email protected]  yes I did have high CD19+5 too cant remember what my levels were though.

In case anyone else is in a similar situation, Dr G is happy to give me a drip next week once he has reviewed my notes without the retest, I think he will opt for IL this time too and then do my retest a week later.  

Oh yes and the receptionist is Akvil (Dr G copied her in on my email!) , mystery solved   . 


Ells

PS - no more blood - phew.


----------



## berry55

Ells- glad you r now sorted. I dont know what 2 do. I think i'm gonna hold off to try get the retest done nxt week... if i cant then i will contact Dr Gorgy. xxx


----------



## Clarebaby

Hi All,

Long awaited results have arrived, help please!

NK Assay
50:1  result 20.9
25:1  result 10.4
12.5:1  result 3.6

IgG conc 12.5 50:1  result 10.1
IgG conc 12.5 25:1  result 10.1
IgG conc 6.25 50:1  result 8.8
IgG conc 6.25 25:1  result 9.3

%CD3    result 87.9
%CD19  result 3.6
%CD56  result 4.3
% of CD19+ cells, CD5+  result 2.8
.....................................................
T Cells IgM+  1.7
T Cells IgG+    1.1
B Cells IgM+    35.0
B Cells IgG+    8.3
......................................................
Factor 11 G20210A mutation    negative
FactorV (Leiden) G1691A mutation  negative
MTHFR gene mutation negative
........................................................

50:1 w/Intralipid 1.5mg/ml  9.9
25:1 w/Intralipid 1.5mg/ml  7.7

...........................................................

DQ Alpha -  Me  0301, 0303
DQ Alpha -  Hubby 0201, 0501


SO - what does it mean and how much is it gonna cost to treat it and when can I cycle again??

Thanks in advance!


----------



## agate

Clarebaby:

NK Assay
50:1  result 20.9 (your NK cells kill more than 15% of the target cells in a test tube)
25:1  result 10.4
12.5:1  result 3.6

IgG conc 12.5 50:1  result 10.1 (your NK cell killing power comes down below 15% if a solution of IVIG is added to the test tube)
IgG conc 12.5 25:1  result 10.1
IgG conc 6.25 50:1  result 8.8
IgG conc 6.25 25:1  result 9.3

%CD3     result 87.9 (your T cells as a proportion of total lymphocytes is slightly high)
%CD19   result 3.6
%CD56   result 4.3
% of CD19+ cells, CD5+   result 2.8
.....................................................
T Cells IgM+   1.7
T Cells IgG+    1.1
B Cells IgM+    35.0
B Cells IgG+    8.3 (you'd prefer the proportion of your DH's B cells that are marked by your IgG antibodies to be at least 30 and preferably over 50 - this result MIGHT rise normally when you get pg, but if you have been pg before, you'd definitely like to see it higher - Dr G will v likely suggest that you have LIT to try and increase it so that your body is better prepared to recognise an embryo which has your DH's DNA - given its quite low, its going to take at least 2 shots (maybe 3))
......................................................
Factor 11 G20210A mutation    negative
FactorV (Leiden) G1691A mutation   negative
MTHFR gene mutation negative  (those are all good - no inherited thrombophilia)
........................................................

50:1 w/Intralipid 1.5mg/ml   9.9 (your NK killing power also comes down when ILs is added to the test tube suggesting that you can probably have ILs drips instead of IVIG which will be much cheaper)
25:1 w/Intralipid 1.5mg/ml   7.7

...........................................................

DQ Alpha -  Me  0301, 0303
DQ Alpha -  Hubby 0201, 0501  (you have no DQa/allele match with your husband).

From those results in isolation, I would GUESS you are looking at prednisolone tabs during most of stimms and 2ww (cheap), low dose clexane maybe because of the NKs, but I'm not sure on that one (about £5/day during most of stimms/2ww), ILs drips 7-10 days before ET, and probably again on BFP and 1st scan - £285-£350 each, I think - may need more in pg - will depend how your results go), 2 (or 3) shots of paternal LIT before you cycle (price varies a lot depending on the cost of blood tests for your DH and where you have it done - see the LIT needed chat thread and the LIT FAQ thread).

Your TH1:TH2 cytokine (TNFa) result isn't here?


----------



## Clarebaby

Thanks so much!

Doesn't sound too bad, and at least I now have some answers as to why I have miscarried so many times before.

Will chase the missing result.

Thanks again, you're a star!


----------



## Chicky Licky

Clarebaby - might be worth having the Hidden C test done as well as this can cause miscarriages. Some women who have tested -ve in the UK are testing +ve for it in Greece. See this thread for info. http://www.fertilityfriends.co.uk/forum/index.php?topic=190643.0

I'm just about to get tested for it as it was the only test we didn't do before. I just want to rule everything out.

Shellie
x


----------



## Clarebaby

Yes, thanks Shellie, I am going to do that test.  Just have no idea when AF is going to arrive following ERPC in March.  Have my MoonCup ready!.


----------



## ratsy

Hi girls 

Dp phoned akvil today and she said DR G  will be back on thursday hes getting a train back (hopefully he will make it )  

Sarahh - do you know if there is a waiting list for the LIT i did ask akvil to put me on the list but she said its to see how many people interested so wasnt sure if it was a waiting list aswel 

Desi - are you having lit with DR G  or you going athens / cairo  i thought the LIT tx would be up and running end of this month bit worried bout that last bit ( near future ) 

Thanks girls x


----------



## Ourturn

Shellie -     hope the blood test brings better news. Think the C test is well worth doing. I am   that once I clear the C my immunes will calm down

Ells    

Agate - how are you feeling? No more scares I take it?  

Evening ladies

Day 24 of antib's, last day tomorrow thank god! 

Anna x


----------



## ratsy

Shellie - soz to hear your news  

Hope its not af and you get a good blood test  

R x


----------



## anabel79

hello ells  I need to talk with dr.G and I need his email adresse, please if you could sent to me...Thank you!


----------



## anabel79

Ells  sorry I just read all the posted messages and I found the email.Thank you!


----------



## Lois

Hi

If anyone's interested regarding the best prices of medications, I discovered yesterday that ASDA doesn't mark up any of the prices of IVF drugs including gestone. Their pharmacies (at least the 2 I spoke to via telephone) charge £4.50 per 50 ml ampule - that's £9.00 per 100ml, which is 50p a day cheaper than what I'm paying at the moment. I discovered that if I go on to use ASDA, I will be saving £2.00 a day on gestone and clexane injections.

Good luck & love to everyone.

Lois xxx


----------



## deegirl

Hope everyone is having a good day and not too stressed about Dr G not being in the country etc.  

Dee x


----------



## sarahh

Ratsy - well all I know is that Dr G said either to have the LIT with him 1 wk after my Humira inj (which I took last Friday) or 1 wk after the 2nd inj so I kind of figured that he was going to fit me in whenever I needed it.  Will find out more tomorrow when (hopefully) he is back in the clinic.  Hope he didn't have any EC/ET's planned for this wk for any girls on here?  

Shellie hon, I'm so sorry that your AF has turned up - if you are sure that is what it is & not some implantation bleeding.  Sending you huge   and   that things change for you on Friday.  May be an idea to keep up with your meds, just in case. 

Agate, thanks for the info, don't suppose you have the contact info for the people that carry out the C tests in Greece?  Hope you are taking it easy.  

Ells, hope no more bleeding / cm for you hon and I really must get round to phoning about acu tomorrow when DD is at preschool!  

Hope everyone else is ok.  
Sarah x


----------



## Chicky Licky

Hi Sarah - I stopped all my meds today! Maybe I shouldn't have done but felt sure it was AF as a heavy steady flow. Plus I've got my usual hormonal headache today which accompanies my AF. 

Last night though I got a nasty surprise in my mooncup (collecting blood for C test). There was a huge blood clot...and I mean HUGE...it measures 4.5cm x 2.5cm! I'm going to try and get in at the Dr's tomorrow and take it in (how embarrassing!). Read on the internet that it can be related to miscarriages but not sure if that is later on or not. 
Anyway, couldn't get in for an HCG test until Friday (my OTD). 

I'm kind of worried about the clot though as isn't Clexane and baby asprin meant to thin your blood and prevent clots?

Re getting the C test done. Serum charge 200 euros for the test. However, found out today that a bank transfer to Serum direct would cost £25 and they don't accept visa. So cheaper to pay Dr Gorgy £200 and go through him. He sends the test to Locus Med and not Serum but at least it's the same test. I really wanted to put my biz through Penny though after the big help she's been to Swinny, so that's a bit of a shame.  

Mmm...wondering if I should take my meds now, just in case. Any ideas anyone?

xx


----------



## ratsy

Hi sarah 

DR g told me to have my LIT first and i said LIT first and he said yes so im not sure now he was in a rush when i went to see him and he got muddled 

I havnt even ordered my humira yet should i have 

Do you know what ive got to do with [email protected] i havnt used them before and how long the drug lasts before i use it 

I dont want to ask DR G again as i dont want to be charged £90 for just asking that 

I dont know what to do now im worried 

R x


----------



## agate

Ratsy: humira keeps for months/years so long as it arrives refrigerated ([email protected] send it by courier in a carton that has ice bricks in with it) and then you must keep it in the fridge until you use it.  You just need to phone [email protected] 08702400518 and ask for Jade Herrington.  You either fax her or post her your prescription and then she takes the payment from you over the phone and arranges the day/address for the courier.  You might get it cheaper elsewhere - but normally they are pretty cheap - but given it costs a lot it might be worth checking another couple of chemists e.g, Fazeley and Asda.
It only takes a few days to get it from [email protected]

ShellieG: I had huge clots and heavy bleeding but stayed pg.  For that reason, I'd feel better if you'd stayed on your meds.  I would GUESS its a bit of tissue rather than being just clotted blood.  If you squeezed some of it in a piece of tissue paper, you'd probably find that as you squeezed out the blood you'd be left with greyish uterine tissue. Sorry if that's TMI.  I don't THINK this is the sort of clot that clexane will prevent, as clexane is only supposed to prevent actual clots made of blood (not tissue that is just stained/full of blood).

SarahH: as ShellieG says, it sounds easier to go via Dr G for the C test rather than direct to LM in athens.  All the tests do go to LM in athens - its just a choice of whether Serum is the referring clinic or Dr G is (I think).


----------



## Chicky Licky

Thanks Agate. I'll check it out! Going to try and get an appt at the Dr's today anyway and see if they can pull my HCG test forward too. xx


----------



## LV.

Hello girls,

I have the other part of my immunes results (still waiting for hidden C though) and I'd be eternally grateful for any pearls of wisdom. 

MTHFR - Positive
Heterozygous - Positive

HLA-ABC Genotype
                Me              DP
HLA-A        03,30          01,32                    
HLA-B        07,27          14,44
HLA-C        02,07          08,06/12

HLA-DR Genotype

Me
HLA-DRB1    13,15  
DRB3 present, DRB5 present

DP
HLA-DRB1    03,11
DRB3 present

Thanks
LadyV  xxx


----------



## Clarebaby

Hi

I have my TH1:TH2 results, 

TNF-a:IL10 (CD3+CD4+)    55.4

IFN-g:IL-10 (CD3+CD4+)    9.6

This looks like a problem to me, but don't really understand what it means or whether it's treatable?  Help please?

Thanks
Clare


----------



## agate

ladyverte said:


> Hello girls,
> 
> I have the other part of my immunes results (still waiting for hidden C though) and I'd be eternally grateful for any pearls of wisdom.
> 
> MTHFR - Positive
> Heterozygous - Positive
> 
> HLA-ABC Genotype
> Me DP
> HLA-A 03,30 01,32
> HLA-B 07,27 14,44
> HLA-C 02,07 08,06/12
> 
> HLA-DR Genotype
> 
> Me
> HLA-DRB1 13,15
> DRB3 present, DRB5 present
> 
> DP
> HLA-DRB1 03,11
> DRB3 present
> 
> Thanks
> LadyV xxx


well the MTHFR hetero is an easy one - that's a very minor sticky blood condition - so Dr G will probably prescribe clexane - some docs suggest a higher dose of folic acid for TTC - but the standard 400mcg in pregnacare etc is enough according to most docs

All I know about the HLA ABC is what it says in the RFU manual - that couples who share HLA antigens are more likely to have repeat miscarriage, but it doesn't look to me as though you appear to share any with your DH?

I THINK the HLA B27 has some links with increased rates of autoimmune arthritis related conditions - but I know very little about these. I haven't seen many ladies get those tests done - so I don't know what has made them necessary in your case, or to be honest what they mean.



Clarebaby said:


> TNF-a:IL10 (CD3+CD4+) 55.4


This basically means that you have much higher levels of pro-inflammatory TNFalpha compared to anti inflammatory Interleukin 10. This makes it harder to get and stay pregnant and it can affect egg quality. Some docs would treat with IVIG and or ILs. Dr G, ARGC and Beer Centre would probably use those with a pre-conception course of humira (a drug given for autoimmune diseases that are associated with high TNFa e.g, rheumatoid arthirits and Crohn's) first. Given your level is really quite high, you are likely to be prescribed at least a course of 4 shots (2 weeks apart). Although TNFa may initially get worse (flare), it will hopefully then come down. According to studies I've seen, the subsequent pg success rate does seem to depend on how well your levels come down with the humira, so I would GUESS that Dr G would prescribe you a course of shots and then evaluate the situation after a retest. I THINK that unless you need to sort out other issues first (e.g., if you had a + C test and needed antibiotics, or if you need to have LIT first - because LIT can sometimes bring TNFa down), humira will be your next step - but to do that, first you need to get a TB test (Quantiferon TB gold or TSpot TB) because if you have any latent TB it needs to be treated first before you can have humira as humira can trigger latent TB infections to become active. You can see if you can get the test done locally through your GP (or local private hospital - it can't be done on posted blood - needs fresh blood) - otherwise its a trip to TDL to get the TB test done.


----------



## LV.

Thanks Agate x


----------



## Clarebaby

Thanks Agate,

That's helped my understanding (although it does sound v scary).  Have chat with Dr G tomorrow, so will let you know what he recommends.

Best wishes
Clare


----------



## agate

no worries, Clarebaby - it does sound scary when you see this stuff for the first time, but then when you start 'hanging out' here, it starts to seem normal as a lot of us have similar issues .... do let us know what Dr G says.

AFM: bump and I are off to the seaside for a week or so tomorrow (hopefully.... but I am very unreliable with travel plans... and there is a whole day between now and then for me to get myself into another pickle... or even just a very long nap and not get up in time)  - not sure how much internet I will see whilst I'm there - or how I will cope twiddling my thumbs all day if there isn't any.
  
if anyone is in the area (east sussex coast) and wants to meet for coffee or a bun or something I would be brave!


----------



## Mousky

Ladies,

I hope you don't mind me posting but I'm wondering if you can help  

I'm trying to make an appt me Dr G and I'm wondering if it can be done at any "cycle day". Not sure it has any relevance  
Also I get it from your posts that for doing the blood tests we should be there Mon, Tue or Wed in the morning?
I'm a bit concerned about it as I don't seem to find flights reaching London before 9  

Mousky xx


----------



## Cozy

Mousky,

you can have immune testing done any cycle day and you need to have blood done before about 1pm if possible on Mon/Tues/Weds

Cozy


----------



## agate

you can do most things on any cycle day 
if you need a uterine biopsy you can really only do those 2-3 daysish before your AF is due - but most ladies opt to wait and see what their TNFa blood result is before deciding to do a biopsy - because if TNFa comes back high, Dr G will prescribe humira for that - which is the same drug that he'd put you on if your biopsy came back with high uNKs - so you might be able to avoid the discomfort of the biopsy - but its up to you if you want to try and get it all done at the same time just in case. 
if you want a saline scan done to check your uterus and tubes for major anomalies then I'm not sure if they can only be done at a particular time of the month or not (I think they can be done anytime but I'm not sure) - you wouldn't need this if you have something similar before to look at your tubes and uterus - and if you want it done you'd probably need to book a double appt slot or something because it will take extra time - so if you want it, check with his receptionist.

If time of day is an issue, you can phone TDL pathology (the lab that Dr G uses on wimpole st) and ask to speak to their referrals dept and check what time their fedex pick up for RFU chicago is on the day you want to go (mon/tue/wed - usually - watch out for UK/US bank holidays).  Then you just want to make sure that you have about an hour after your appt with Dr G before the pick up to get your bloods done.  If that doesn't work out, you can pick up a post pack from TDL and post your bloods back but you do need to make sure they can get back to TDL quite quickly (they need to arrive in chicago before they are 48 hours old).

hope this helps


----------



## Mousky

Many thanks  
I'm going to ring Akvil then.
I'm not sure about the saline scan or the uterine biopsy. I'm considering another hysto but we'll have to hear what Dr G has to say and then think about it.

Cozy - I see you're going for your 21 weeks scan, it must be so exciting  
Agate - I hope you have a nice time at the beach  

Mousky xx


----------



## Clarebaby

Hi

Have had my chat with Dr G and he didn't seem too worried about any of my issues, my TNF-Alpha is obviously the biggie and the one he wants to address first with Humira.  Advised that need to get latent TB tested with Gold-Quanti(?) test - anyone know who does this and how much - do I just ring my local private hospital?

He thinks two months to sort out all the issues but was non commital when we questioned about timng plan.  Do we sort out NK cells, and LAD at same time as sorting TNF-Alpha?  guess we must if going to sort out all within 2 months.

Have additional complication that moving to Rome at end of June, so unsure whether to rush and get all sorted here and plan to do IVF in Rome or to hold off and do everything in Rome.  Hubby is stessing about this where as I WAS quite chilled about it all!

Feel happy though that he thinks all is solveable - and within two months!

Agate, have nice week away - how will we cope without you!!!!

Clare


----------



## agate

Clarebaby: quantiferon TB gold test (TSpot TB is equivalent to it too) (see my post to you above) - ask GP to see if you can get it for free, but otherwise phone round and see where is cheapest for you - can't be done by post though - blood must be fresh.

It is possible to intersperse humira and LIT (to sort out LAD and TNFa at the same time) - but you can't do LIT and humira shots in the same week so you need to factor that in, and bear in mind that LIT shots are normally done 4 weeks apart (and you'd want at least 2).  A lot of the decision on timing will depend on where you are going to get your LIT done - there is a clinic every fortnight in athens - or otherwise, you might have to wait until Dr G eventually gets his own LIT set up (athens is probably easier - see the LIT FAQ on the immunology section).  You also need to make plans for getting your DH's blood tests done (if he is going to provide the blood for LIT).  Some ladies prefer to wait until after they finish humira before doing LIT, but that will add on quite a bit of time as you'd need time for 2 LITS 4 weeks apart - and its even possible that the H could start to wear off if you wait too long, so although you might want to start on the H first, you might not want to leave it too long before sorting out your LIT dates. 

The tx for the NKs themselves doesn't start until after you start your cycle. 

So maybe work backwards from when you think you might cycle allowing a week for your TNFa retest results back, 3 weeks after finishing humira before your retest and 2 weeks between your humira shots - and see where LIT will fit in.  That does assume that you don't end up needing 6 shot of H in the end though. I assume he's suggested 4 to start off with?


----------



## Clarebaby

Thanks Agate,

Sorry for more questions and thank you again for your time, but when you say DH blood tests - is that something he has done here and gets a  certificate to say his blood has been screened or something or is that something they do in Athens?

Clare


----------



## agate

Clarebaby said:


> Thanks Agate,
> 
> Sorry for more questions and thank you again for your time, but when you say DH blood tests - is that something he has done here and gets a certificate to say his blood has been screened or something or is that something they do in Athens?
> 
> Clare


Whoever is donating blood to you for LIT (probably your DH) needs to have their blood tested for infections before the LIT appointment - to prove that they don't carry anything that can infect you. If you have LIT in the UK with Dr G, then you will need to arrange blood tests for your DH with him and will need to be careful about the timing of them because in the UK there is a requirement that the tests have to be less than 30 days old on the day the LIT is given (so to get 2 sets of LIT done, 28 days apart only gives a 2 day window for doing the tests and getting the results back - and if you need a 3rd LIT, you have to do the blood tests again). If you get LIT done in athens, there isn't a time limit on blood test results, so it is a bit more flexible, and you can reuse any relevant test results that you have already e.g. ,from previous IVF. There is a full list of the blood tests your DH needs for athens in the LIT FAQ on the immunology section but Dr G will presumably have a slightly different list of tests when he gets started... and yes, you will need to show a paper copy of the test results to the doctor that gives you the LIT. It is possible to have LIT from a third party donor, in which case the doctor who arranges the LIT will need to make sure the donor's screening tests are done for you (and will charge you a fee for the donor blood), but generally, paternal LIT is supposed to be more effective for most ladies.

To get the tests done before Athens, you'd need to see which tests you already have and so don't need to get done again, then for the rest, you can see if your GP will let you have them for free, see if you can get any done for free at a GUM clinic, and have the rest done at a private hospital or arrange them at TDL through Dr G.

To ge the tests done before LIT with Dr G, you'd probably have to have them all done with Dr G at TDL because the 30 day timing will need precision planning.


----------



## ratsy

Agate / girls 

Do anyone know the phone number for [email protected] and fogot who i need to ask for 

Agate 2babies booking me in for LIT  4th may but i havnt ordered my humira yet DR G said to wait so i didnt get it will i have time to order it monday morning and take it before the LIT 

Thanks 

R   x


----------



## agate

ratsy: jade herrington 08702400518.
If you fax her your prescription on monday I think you might not get the H early enough to take it a week before 4 May - so you'd have to leave it and have it a week after 4 May instead.  You have to have it delivered somewhere you will be in because it comes refrigerated and you need to sign for it and get it into your fridge.


----------



## LV.

Hello girls,

Agate - you were totally on the money! Dr G has recommended ILS, Clexane, Humira and  LIT. Waiting for a Sher consult now which I'm assured will offer different drug regime. What is a girl to think when different docs recommend different things?! Ahhhh!

Could anyone enlighten me on the time frames for the above? We are hoping to cycle with Sher in July but before that we are getting married and have honeymoon so I'm not convinced we'll be able to fit it all in! If we delay then Sher isn't cycling in August and (I think) Sept so everything slips for what feels like an age

Am I right in thinking that humira is "controversial" or did I make that up? I've read so many things it's all a blur. 

I hoe you have a lovely time at the coast Agate. We are going to Brighton tomorrow to see our wedding venue to tie up some loose ends, wonder is we will pass each other ont he way?! Enjoy, I hope you have a wonderful time.

Lots of love
ladyV xx


----------



## deegirl

Have a lovely weekend girls!!


----------



## agate

LadyV: My crystal ball says that Dr Sher will prescribe ILs, clexane and dexamethasone (instead of prednisolone) but not humira or LIT.   He will say that ILs drips together with dexamethasone will be sufficient to deal with most problems that LIT and humira are used for except where there is a significant DQa match - in which case he will propose regular ILs drips - but if that doesn't work, he will recommend surrogacy rather than LIT or humira. 

For timescales: assuming you have a 2 shot course of humira - then you take the 2 shots 2 weeks apart and then wait 3 weeks and then retest your TNFa and allow a week to get your results back.

If you assume 2 shots of LIT 4 weeks apart, you have to decide whether you want to retest LAD before you cycle and check its ok, or whether you want to go ahead anyway (the downside is that if you retest LAD later and decide you need a 3rd shot in early pg, you will probably be on steroids which make the LIT less effective so you might need a 4th shot).  If you want to retest, you need to allow 4 weeks after the 2nd LIT, then do your retest, then allow a week for the results.

If you do go with Dr G's protocol using the LIT and humira then you need to work out your timetable so that you don't end up taking LIT and humira within a week of each other.   So its a case of getting out a calendar and working out which dates you can do what.  Bear in mind that LIT is only offered on alternate tuesdays (next is 4 May) in athens (although Dr G is intending to start offering it soon).

The ILs, steroids and clex don't start until after you've started your stimms.

Humira is more controversial than some other treatments - mainly because of the lack of safety data on taking it close to pregnancy - but it is still quite widely used e.g, by the Beer centre and ARGC as well as Dr G.

LIT is also controversial because studies have shown very different effectiveness rates for it (although those who advocate it say that the studies with negative results were done without using the correct protocol e.g., using refrigerated blood instead of fresh and choosing a patient population who had other significant untreated problems).  Its also seen as risky because its only done on a small scale and you are totally reliant on the operator for making sure that clean needles are used etc and that the donor of the blood is properly screened for blood borne diseases.  For those reasons it was banned in the US some years ago, so ladies in the US who want it have to fly to mexico for it. 

however humira and/or LIT do seem to have worked for a lot of us when combined with the other meds that Dr G uses. 

Whether you want to go with Dr G's protocol or go with Dr S is going to have to be a personal decision, but if you are doing your cycle with Dr S, its going to less stressful to stick with his advice on the immunes as well to avoid the stress of being in between two immune docs - so if it was me, that might tip the decision in that direction for me.


----------



## LV.

Agate, I've only been reading this thread for a week or so but it's clear you are a bit of a goddess! Thank you so much for the info. I think you're right, I will be leaning towards Sher's advice - I've already stopped taking DHEA (after a real internal battle with myself) as Sher's not behind it so being consistent with this mindset, I think the only think I can do is plump to go with the doc that's treating me. We don't have a DQ Alpha match which I'm thinking is a good thing.

It was funny today when we walked out of Dr G's office - I said to DP - "See I told you what he'd say" (based on what I'd read here) as DP was skeptical about the amount of tx that would be recommended before our appointment. I was in a bit of a panic last week once we got the first flush of results and he was saying not to pay too much attention to what I'd read on a "lay" discussion board but I was trying to convey how this road is well traveled and the words of the girls are often worth just as much as those of the docs. No surprises at all, you should start consulting with your deep understanding! 

Thanks again and I hope you are having a fab break

LadyV xx


----------



## vw22

Hi everyone, don't know if you remember my story but another negative after my first immune treatments on DE, has meant time out for a month...

The clinic is pushing for DS too now, which we are considering although they have admitted they are totally lost and don't know what to do!!!

Now trying to wean myself off the pred but feeling rubbish...considering I might have to take it again for the next try next month, would it be better to stay on it rather than come off it only to then start it again so soon? Any views?

Agate also mentioned a uterine relaxant as I get cramping soon after ET and I wondered if anyone had used this and what they had?

Agate, I can see you are about to take a trip, have a great time and enjoy some internet free time! Not sure what we'll do without you though!

Many thanks

Vx


----------



## Clarebaby

Hi

Does anyone know where you can get the Quantiferon Gold latent TB test done?

I am in Warwickshire.

Also, rather shocked by the price of Humira - anyone know of the cheapest place for this recently before I start ringing around?

Thanks
Enjoy the sunshine everyone!


----------



## Donkey

Afternoon, what lovely weather!!  

I haven’t been around for a while as things have been difficult.  I started my 5th cycle which seemed to be going well and at EC 4 eggs were collected.  Unfortunately there was zero fertilisation.    

Also (perhaps Agate has some knowledge here – I’m really testing you now!!) they tried to aspirate what they thought were endometriotic cysts, 2 at 4.5 x 4 cm.  But they weren’t filled with blood as expected but a think white fluid.  So they have sent the fluid for a biopsy as they weren’t happy.  They think the cysts MAY be dermoid cysts however the Dr said they didn’t present as dermoid cysts. So…waiting for results.  But to add insult to injury some of this fluid leaked into me and ‘poisoned’ me and I was really ill after EC.  Both IVIG and Intralipids drips wasted!!!  

So I’ve been a little fragile physically and emotionally, we go back on Weds and will see what they say.

To all the girls I met whilst having LIT I had it re-tested and my results went up from 9 to 31.4.  So, I’ve reached the ‘pass mark’ but I guess ideally I need more LIT to get to 50.  Flowcymetry went from weak positive to negative, so I guess that’s good too.  


A question to those of you who’ve had the hidden C test via Dr Gorgy.  I rang Akvil and she has sent me the ‘equipment’.  There is also Fedex paperwork with an account number.  Can I deduce from this that I phone Fedex when necessary to get them to collect it and postage has already been paid for?

I hope you girls are all well and looking after yourselves.

Lots of love
Donkey xxx


----------



## ells

Donkey     so sorry to hear what you have been through hunni.  I hope that you are now on the mend physically     .  I hope you get some answers at your next appointment sweetie   .

Hi to everyone else, hope you are all well.  

Ells


----------



## Zeka

Donkey, sounds like you've had a really rough time of it. Sending you a big hug! Hope you're starting to feel a bit stronger and that the results of the fluid come back with some sort of explanation. 
Agate, hope you're having a nice w/e on the coast and enoying the weather down there. 
Hello eveyone else tooooo!
Zeka x


----------



## Donkey

Thanks Ells and Zeka  
I hope you are both well too
xxx


----------



## vw22

Donkey, how disappointing for you, I am so sorry the fertilisation didn't go ahead after everything you did to prepare. Never come across the cyst description before so I can't reveal anything on that I am afraid.

I sent my C sample direct and by normal fast post but it does sound like yours has possibly been included in the price if you have paperwork etc...hopefully someone can answer soon...
vx


----------



## fi7

hello all

just reading through and catching up.  Big hugs to you all.

donkey stay strong, i am sorry you have had such a rough time, i hope things start looking up and you get some answers.

good luck to all of you heading to athens on the 4th.

big hugs

fi


----------



## 3babies

Hi ya ladies,

Gardening is out the window for me today 

Donkey sorry to hear your latest news  i'm assuming the cysts were situated near your ovaires? correct me if i'm wrong. I Any idea when your biopsy results are in?

Great news regarding your LAD no's being over 30%  Hope May will be a much better month chic 

2babies x


----------



## Donkey

Thanks Fi and 2babies  

2babies, yes they are both on my left ovary...they've virtually taken it over  
xx


----------



## agate

vw22 said:


> Now trying to wean myself off the pred but feeling rubbish...considering I might have to take it again for the next try next month, would it be better to stay on it rather than come off it only to then start it again so soon? Any views?
> 
> Agate also mentioned a uterine relaxant as I get cramping soon after ET and I wondered if anyone had used this and what they had?


Re pred: most docs would say to come off it whilst you don't need to be on it, but I suppose its borderline given that, as you say you will be starting again soon... the longer you are on it for, the more yuk you will feel when you do stop it though.

uterine relaxant: I think ratsy mentioned the name of one that her clinic uses a while back - but there are several different ones and I don't know what the pros and cons of each one are.

Donkey: I'm sorry I can't really guess what sort of cysts they are... only that if the fluid made you ill, that does seem to suggest some kind of infection?... but that's a guess.. bacterial infection/contamination of the culture from some sort of bug could also result in zero fert, I guess. I hope you get an answer from the biopsy asap. I can't imagine what a shock it must all have been after everything had been going so well. Have they had you on some sort of antibiotics since? maybe they have to wait for the biopsy. If it does turn out to be some sort of infection, I think if it was me, I'd probably try and get some/a second opinion on the right antiBs/duration of antiBs/method of antiB delivery - just on the assumption that you don't want to take any chance that its not enough to kill it off.

Ladies: is anybody going to be at Dr G's on wed am? Am thinking I might go to TDL and get my retest done there this time as I guess I should try and get it done sooner rather than later.


----------



## ratsy

Hi vw22

Yes like agate said my clinic uses nifedipine hope this helps   Think you take it from e/t but double check as all clinics have different methods and dosages 

Thanks agate for earlier  

R x


----------



## vw22

Thanks agate and ratsy for the info, really appreciated. vx


----------



## Mousky

Morning ladies,

I've got an appt for the 5th (Wed) at 11am and Akvil reckons I'll have enough time for the bloods.
I'm trying to read your older posts and I'll read Dr Beer's book again (after DH is finished with it  ) so I can be informed but I'm still overwhelmed with all the info  

Donkey - how frustrating for you   

Mousky xx


----------



## rozelina

Hi everyone

I am new here and would like to introduce myself. I live in Switzerland so my English might not be so smooth at times. Sorry for that. I had 3 ICSI's and 6 embryo-transfers. 4 were negative and two ended very early in biochemical pregnancies. My husband has OAT III and I have Endometriosis (IV). We then had our blood tested in Germany. Everything is ok, except that my natural killer cells are around 14% (which is a bit high but should be ok). We then also tested the Cytokine. The results are as following:

TNF alpha:              54.9 (61.9 - 85.5)
Interferon gamma:  19.2 (23.6 - 36.6)
Interleukin 4:           2.17 (1.5 - 2.9)
Interleukin 10:        1.25 (1.4 - 2.

TNF alpha/IL 4        25.3 (20.5 - 34.2)
TNF alpha/IL 10:      43.9 (13.2 - 30.6)
INF gamma / IL 4:    8.9 (7.0 - 13.0)
INF gamma / IL 10:  15.4 (8.5 - 20.5)

The doctor that made the blood testing recommended to use a TNF alpha blocker. Problem is, that in Switzerland all costs (also for the IVF/ICSI itself) have to be paied by the patient. So everything would be very, very expensive. Is a pregnancy not possible with these blood results and without TNF alpha blocker? Are there alternatives (Intralipid; Cortisone?)? What does it mean when the TNF alpha itself is to low as in my case? I've never seen this before.

Sorry, I have so many questions. It is only that in Switzerland (and also Germany) doctors do not yet work with Humira for example and therefore do not have any experience. I'd be so glad if I could find some help here.

Thank you and have a very nice day, rozi


----------



## agate

Rozi - here in the UK we also usually have to pay for all our fertility meds - there is some funding but it depends on meeting particular criteria and is rationed - drugs like TNFa blockers almost always have to be paid for by the patient if they are for fertility.

I honestly don't know if a TNFa blocker is the appropriate treatment for you because in isolation it looks as though your TNFa is normal but your IL10 is low.  I think maybe you should get a second opinion if you are not convinced?  You could try a phone consult with Dr Gorgy who does use TNFa blockers a lot or get a completely different response from someone like Dr Sher (Las Vegas) who doesn't use TNFa blockers.  Most docs think that the tests for NK cytoxicity/killing power/activity  are more important than the tests of NK population.

hope this helps


Mousky: welcome!


----------



## rozelina

Thanks agate. It is so frustrating that my blood results are so weird (low single levels, high ratio). I'm a bit scared that at the end there won't be a treatment at all for me. 

Do you think it would harm to give it a try with Humira anyways? Maybe Intralipids?


----------



## agate

my GUESS is that intralipids would be a no risk option - because its more immuno-modulatory rather than immuno-suppressant (like humira and other TNFa blockers) but I am not a doctor.  I would suggest that you try to talk to a doctor who uses both these meds a lot.  I am sure Dr Gorgy would be happy to talk to you if you want to arrange a telephone appointment with his secretary.  Bear in mind that in the UK, the clinics don't routinely test the TNFa number on its own - normally we only get the TNFa:IL10 ratio tested - so we probably wouldn't know if we had similar results to you - so perhaps your results are not as worrying as you might think.


----------



## Klingon Princess

ah, found you... thanks for inviting me over here, Agate.


----------



## Clarebaby

Ok, stressing out now as I have no idea how to go about getting this latent TB test done.  Dr G said to do the Quantiferon Gold test but is this the same as the spot test?

My GP won't do it and the only clinic they could recommend doesn't do it either?

Did anyone manage to get it done locally to where they live or is this another trip to London?

Any help gratefully received please, feel like am failing at first hurdle!


----------



## ells

Clarebaby, 

didnt want to read and run.  Have you tried your local BUPA hospital - I had mine done there (although it was part of my crohns treatment) should cost less the £100 - I think mine was about £60.  Hope that helps hun.

Hope everyone else is okay.

AFM Scan number 2 tomorrow, excited and nervous - had some bleeding but brown and only a small amount so have been     very hard that all is okay.  

Ells


----------



## Clarebaby

Thanks Ells,

Good luck for tomorrow, sure all will be fine.


----------



## ratsy

Hi girls 

Im going out for LIT  next week do any of you know if its ok to take cough med 

Goodluck ells youl be fine  

R x


----------



## agate

ratsy: should be fine as long as it doesn't contain any antihistamines - you'll need to look up the active ingredients and make sure they are not antihistamines (sometimes these are used in cold cure meds generally as a sleep aid - but not always so it will probably be ok).

Ells: good luck for your scan.  going for scans is horrible but coming home is brilliant, iykwim.

CB: the quantiferon tb gold test is supposed to be equivalent to the Tspot tb test.  they are basically rival tests sold by different companies.  I had it done at local bmi hospital (try spire hospitals as well).  unfortunately you can't do it by post.

KP: Hi!


----------



## ratsy

Thanks agate 

Just looked and it hasnt got any that i can see and its non drowsy so il take some 

Thanks  

R x


----------



## ratsy

Girls 

Im looking for info as i know alot of you girls have already been to athens 

Im looking at staying at the athens gate does anyone know what the area is like for the evening is it close to restaurants and things 

Thanks 

R x


----------



## Seven

Hi Ladies,

Ive just had some more test results back from Endometrial Biopsy Dr G did and wondered if you could shed anylight.

CD57+ cells/hpf (20x) are identified consitant wih no increase with CD57+ cells.

Fox p3+ cells/tenhpf (20x) are idetified.

No imfla change
No necrosis
No hyperplasia oratypia

Is this all good or bad?

Also got a positive on the Chlamydia..... boo!

thanks


K


----------



## agate

ratsy said:


> Im looking at staying at the athens gate does anyone know what the area is like for the evening is it close to restaurants and things


athens gate has its own nice restaurant but its only a 10min walk to the plaka district (the old town) which is chock full of restaurants (and gift shops etc). All hotels give away free maps (as does the airport info stand).

Seven: those biopsy results look good - no elevated uNKs, some helpful Fox p3s and no signs of any inflamed or damaged uterine lining tissue. Sorry about the C test - antibiotics for you and DH I guess - you will need to get a prescription from Dr G and then maybe see if your GP will give you the drugs on the NHS so it will be cheaper than the private prescription... but thinking about it... it might just be cheaper to get them on private prescription from asda because you will be paying for 6 x NHS prescription charge because its for 2 people and there are 3 drugs (I think that's how it works but am not sure).


----------



## Bling1975

If anyone is looking for a good hotel in Athens I really recommend Amalia next to Syntagma square. Walking distance to the Dr T, and very close to all shopping and restaurants. I felt that the area was very safe to be Athens.

Can I email Akvil for an appointment or do I have to call? (Don't like the phone) I have emailed Dr G a couple of times over the last month but I don't get any answers. Now I am booked in for retesting on the 12/5 next door but I need the paperwork for the tests in the morning and I would like to see Dr G afterwards to discuss my upcoming transfer and treatments.


----------



## agate

I get the feeling that its easier to get a response by phoning up than by email.


----------



## mag108

ladies sorry I have not posted much. A combination of being very busy, very tired (my sleep pattern is very broken up) and not feeling like I have much to say.
Ells: good luck for tomorrow I really hope it goes well for youx

got Hidden C result back and its a + for me. So, too tired today to feel very upset, though clearly I am feeling a bit knocked about, one thing after another etc and anxious that the 3 x LITs will have been a total wastes of £2700. but... and ever so slightly relieved because it means there is no point rushing to so a private hysteroscopy.

xxx and will be back on when I am not so totally tired


----------



## agate

mag: so sorry to hear that.  I hope that you manage to shift the bug quickly.


----------



## Louiseb26

Ells Good luck for tomorrow Hun...you must be soooo excited. 

Mag I'm really sorry to hear that   Its been a long road for you.Just think when thats clear...your well on your way  

Big   to all you lovelys

Lou xx


----------



## rozelina

agate said:


> my GUESS is that intralipids would be a no risk option - because its more immuno-modulatory rather than immuno-suppressant (like humira and other TNFa blockers) but I am not a doctor. I would suggest that you try to talk to a doctor who uses both these meds a lot. I am sure Dr Gorgy would be happy to talk to you if you want to arrange a telephone appointment with his secretary. Bear in mind that in the UK, the clinics don't routinely test the TNFa number on its own - normally we only get the TNFa:IL10 ratio tested - so we probably wouldn't know if we had similar results to you - so perhaps your results are not as worrying as you might think.


Thanks again! I'll have a telephone appointment this week with the German doc who did the blood testing. I'll ask her exactly what it means when only the ratio is too high and the rest too low and will post it so you girls might profit as well from the response. I might then also get in contact with Dr. Gorgy to ask his opinion.


----------



## mag108

thks ladies.
x


----------



## Donkey

Thanks agate, I'll just have to see what the results bring  

Welcome mousky and thank you for your kind words.  

Mag sorry you got a + and you are feeling so tired.  Everything is an effort when you feel like that isn;t it  

Ells good luck with your scan  

I'm struggling to do the hidden c test, as I don't have very heavy AFs    The things we put ourselves through  

Love to you all

xx


----------



## sarahh

Clarebaby - I had mine done at TDL but the local Spire or Bupa hospitals should do it.  Also I get some blood tests done at my local NHS hospital but paying privately (phone & ask to speak to the phlebotomy department and then ask if it is possible to pay privately for blood tests if you have a referral letter).  You may find that your local BUPA / Spire hospitals all use the NHS hospital blood lab for their tests anyway so for me it was quicker to bypass them and go straight to the hospital.  If you get the right person on the phone it helps though iykwim!! 

Ells, good luck for tomorrow hon, is it back to Wessex?  I hope everything is ok for you.  

Donkey - hope you don't mind me asking but how are you trying to collect the blood?  I also have incredibly light af's & if I do the test am wondering how much you need and how I'm going to get it (didn't like Toffee Girl's description of trying to get the mooncup out - god I didn't even know these things existed till I read it on here !!!).


----------



## sarahh

Sorry page doing silly jumping thing again, does my head in! 

AFM - I spoke to Dr G on Friday bearing in mind that the last conversation we had I was taking my 2 x Humira then LIT with him 1 week after 1st Humira or 1 wk after 2nd Humira depending on timing then stopping the bcp on 4 May and starting down regging on 5 May.  The story on Friday went something like this: no LIT licence yet as late back from hols, missed meeting for approval, no idea when it is going to be; think we may retest your levels before cycle anyway (so another few weeks), just keep phoning to see when I might start the LIT OR go to Athens again....  so from thinking I would down regging next week I now have no idea what is going on.  I'm sure you will all know how it feels to have plans changed and how annoying it is!  I forgot to ask him if I could stop the bcp and do hidden 'C' test with the withdrawal bleed as I was so fed up.  

Ratsy - have you got your Humira yet?  When are you planning your cycle for, see you are going out to Athens (tomorrow?), good luck.  

Sorry for my whinging post.  If anyone hears anything about the LIT at Dr G's do please post on here.  All I was told was to keep phoning on a weekly (weekly, surely you mean hourly  ) basis to see if there is any news!  

Agate, did you have a nice trip away at the weekend?  

Oh, I've got a question for all of you, my dilemna this cycle is that the last cycle DH's sperm were pretty bad, he had some but they were swimming backwards, strange shapes etc. (!) & so not good quality embryos.  After much discussion we have decided that we will consider DS but I don't know whether to use DH's sperm for half of my eggs this next cycle & half DS (depending of course if I have enough eggs) or to use all of DH's sperm as I can't see any reason why I couldn't have IUI with DS if this cycle fails.  BUT then I am worried that with a low-ish amh and my 35th b/day round the corner, I don't want to "waste" my eggs if DH's sperm are not going to do anything.  I know its my decision but wondered what all you lovely ladies think......  its helpful to discuss with others who have a vague idea what I am talking about rather than DH ("I don't know, you decide") or Dr G ("yes, you could do either").... 

Sarah xx


----------



## Mousky

Ladies,

Thanks for the welcome  

For the ones who are still going to do the hidden C test, it's really just a few drops. I used the tampon method and I was only able to get a tiny bit of blood. It didn't prevent me from getting a "strong positive"  

Mag - sorry to hear you've also tested +  

Ells - good luck with your scan   

Bling - I'm with you as I hate the phone   but it only took me a minute to get my appt  

Clarebaby - how annoying having to run after this TB test   I hope you can find a way to do it soon   

Ratsy - good luck with everything in Athens   

Sarah - I'm sorry to hear you'll have to change your plans   I thought I would be having FET in March. Now I think we'll be so lucky if we can do it in August   I was on bcp when I sent my sample to Athens and no one said anything about it so I think it should be OK. Btw, I'm not sure it "applies" to your situation so forgive me if it doesn't but Penny has told my DH today his sperm will definitely improve (he has quite low motility) after clearing C. Since you're doing the test, is this something to take in account? Obviously, let's hope you test negative coz those AB are so annoying  

Love to all.


----------



## agate

sarahh said:


> Oh, I've got a question for all of you, my dilemna this cycle is that the last cycle DH's sperm were pretty bad, he had some but they were swimming backwards, strange shapes etc. (!) & so not good quality embryos. After much discussion we have decided that we will consider DS but I don't know whether to use DH's sperm for half of my eggs this next cycle & half DS (depending of course if I have enough eggs) or to use all of DH's sperm as I can't see any reason why I couldn't have IUI with DS if this cycle fails. BUT then I am worried that with a low-ish amh and my 35th b/day round the corner, I don't want to "waste" my eggs if DH's sperm are not going to do anything. I know its my decision but wondered what all you lovely ladies think...... its helpful to discuss with others who have a vague idea what I am talking about rather than DH ("I don't know, you decide") or Dr G ("yes, you could do either")....


Sarah - that's sounds like its got a huge emotional load rather than just a technical question. If your DH has severe morph/motil probs then clearly you are likely to stand a better chance of getting pg with healthy donor sperm but there is a lot more about what your DH really feels about this and what he really wants - presumably he might still be a bit shocked about finding out the news from the last cycle? If you do a half and half (presumably you need the DH half to be ICSI to stand a chance) then you might be pleasantly surprised... but if you aren't do you think this will be sufficient to let your DH feel that you really have tried hard enough to have his baby... or do you really think he won't mind if you go straight for donor sperm without trying the half and half. I can only assume that you will have a better idea of what he really feels than the rest of us here.... but obviously its hard if he isn't really saying.... I don't think I can say anything that's going to help you make a decision because it would seem that so much would depend on how well he copes with whatever decision you make?


----------



## sarahh

Agate, yes it is an emotional decision, but the news is not a shock, we knew he had problems when we had DD but they have got worse.  He has had almost a year since the last cycle to come to terms with it and has accepted that he would rather have DS and another baby than no baby at all.  I think we just have to see what his sample is like on EC day and then make a sharp decision - problem is that on EC day I don't feel particulary "complus mentus" (wrong sp but you know what I mean!!!!) after the "forgetful" drugs they give you    

I suppose the only other issue is that if my immune issues are being treated as best as possible then is there any other reason you can see that IUI would not be a good idea??  I have never had it before.  I have no other issues apart from the immune ones; I do ovulate every month with a pretty regular cycle but my amh is on the lowish side for my age.  

Thanks for your support & thoughts.  Sarah x


----------



## Tokii

Hi Ladies,

Does anyone have any idea how long the C test takes?

Many thanks in advance.

Tokii


----------



## rozelina

sarahh said:


> Oh, I've got a question for all of you, my dilemna this cycle is that the last cycle DH's sperm were pretty bad, he had some but they were swimming backwards, strange shapes etc. (!) & so not good quality embryos. After much discussion we have decided that we will consider DS but I don't know whether to use DH's sperm for half of my eggs this next cycle & half DS (depending of course if I have enough eggs) or to use all of DH's sperm as I can't see any reason why I couldn't have IUI with DS if this cycle fails. BUT then I am worried that with a low-ish amh and my 35th b/day round the corner, I don't want to "waste" my eggs if DH's sperm are not going to do anything. I know its my decision but wondered what all you lovely ladies think...... its helpful to discuss with others who have a vague idea what I am talking about rather than DH ("I don't know, you decide") or Dr G ("yes, you could do either")....
> 
> Sarah xx


Dear Sarah

Is it in any way possible to check the sperms of your DH again before you decide? Maybe it was just a bad time last time. If they turn out to be better I'll give it a try and go for DH. Only if they are very bad I'd use DS. Half/Half would be a good option. Good luck with your decision!

rozi


----------



## agate

sarahh said:


> I suppose the only other issue is that if my immune issues are being treated as best as possible then is there any other reason you can see that IUI would not be a good idea?? I have never had it before. I have no other issues apart from the immune ones; I do ovulate every month with a pretty regular cycle but my amh is on the lowish side for my age.


well, iui does tend to have a lower success rate per cycle than ivf (assuming the ivf lab is good). so maybe you have to look at how much it costs for the IVF plus the immune tx compared to the same number of DIUIs plus immune Tx each time to add up to give you the same overall success rate for your age (if your AMH is not so good, then you could always pretend you are in the next age bracket up).... then I guess that would start to tell you whether it looks economically sensible to go for DIUIs instead of IVFs?


----------



## Mousky

Hi all,

Tokki - my sample arrived there on a Wed and on the following day I had the results.


----------



## ratsy

Hi sarahh

No i havnt had my humira yet dp posted script today , Im going for LIT on the 4th  

Mousky - Thank you  

Agate - Hope your having a lovely time at the seaside   

R x


----------



## sarahh

Tokii - hi hon, remember me from last year?  How you doing? 

Thanks for your thoughts ladies.  

Mousky - what sample did your DH send off to greece to test for the 'C'?  Is it a sperm sample?  How did you send your samples? Also how much do the tests cost? 

Oh, and hey, you should try 14 wks of antibiotics for latent TB!!! Now that really is annoying! 
Unfortunately DH's sperm has been tested & tested again & gets worse, there is a chance that there won't be any normal ones left this time  

Ells hon, how did you get on today?  

Sarah x


----------



## ells

Evening ladies, I hope you are all well.  

Just wanted to quickly pop on to say all went well today - Sugar and Spice are doing really well, measuring 22.3 and 22.4 mm and had beautiful flickering heartbeats too.  Just waiting for [email protected] to ring me for my next drip - hopefully IL's.  Got a call from the comm's MW today too and they have said they have recevied an irgent referral for me and I have my first appointment on Tuesday   .

Agate I hope you are making the most of the seaside and this fab weather. 

Sarah, hope your DH's swimmers are not too bad and that you get a pleasant surprise on your next cycle.

Hope everyone else is okay     .

Ells


----------



## Tokii

Hi ladies,


Sarahh, of course I do remember you, have you thought of DH freezing some sample before your next tx so you'll have more to play with, think abt it. I've done the dreaded C test and used the moon cup and waiting for my result, going to Greece next week for my booster LIT. What have you been up to?

Sorry Ladies for hijacking your thread, I and Sarahh cycled together last year.

Anyone off to Greece next week and staying overnight? I might be staying overnight but won't know until my C result comes through.


----------



## ratsy

Hi tokii

Im off to greece next week and staying overnight 

R x


----------



## ratsy

Lovely news ells  

so pleased for you and dh  

R X


----------



## 3babies

Fab news Ells  you are truly blessed 
Look after yourself & precious cargo 


2babies x


----------



## Chicky Licky

Sarah - saw your post about DH's sperm. 

My DH has a normal sperm sample but it can sometimes be on the low side, esp for movement. I'd read an article on DNA Fragmentation and wondered if that was why are eggs were arresting on Day 3. Anyway didn't have a DNA test done but got him to take vitamins and cut out alcohol and caffiene, which is what they advise anyway. His results this last cycle were staggering - see below.

Cycle with NO vits - 
Count - 180 mil/ml
Movement - 30%  (told this should be over 50%)
Normal Morphology - 16%  (told this needs to be 10-15%)

Cycle WITH vits and NO alcohol or caffeine
Count - 1364 mil/ml
Movement - 62%  
Normal Morphology - 20%

He took 1000mg vitamin C and 1000mg vitamin E, daily for 3 months before the cycle. He also took a Pregnacare Multi-vit and cut out alcohol and caffeine (he did have decaf tea though).

He was well pleased with the results! The consultant even told him he'd got "olympic swimmers"!!!! 

So just shows you that vitamins can make a difference! 

Hope this helps hun
Shellie
xxxx


----------



## niccad

Sorry I haven't been posting... been waiting and waiting to start cycling & waiting on humira results (which have come back ok -   )

Ells - great great news. I'm so happy for  you xxxx

Sarah - my DH's sperm is really different each time so he had DNA fragmentation test from DrG as I was worried. His came back within the 'normal' range although not great. He's now taking vits and has cut out all alcohol, aspartime, and caffeine. Fingers crossed it'll be ok. Perhaps ask Dr G about the test..?

Agate - hope that you enjoyed/are enjoying some time away. 

Hello to everyone  . I need to have a good read back to catch up properly. xxxxxxxxxxxxxxxxxxxx


----------



## ells

Niccard, great news on teh TNFa 's what did your levels come down too?  Are you going to be doing tx at the ARGC?

Ells


----------



## niccad

Hey Ells - after 2 injections it went from 47 to 28.2  .  Yep - I'm with ARGC and am 7 days into DR now and am waiting for AF. Getting excited and hopeful all over again... 
You must be so excited about having twins... Has the worrying subsided a bit now? 
xx


----------



## berry55

Hi girls,

I'm so so so soooooooooooooooooooooooo annoyed!!! I have had a phone call from my private GP (who took bloods from me and dh for retests for LAD& TNFa ) to tell me that the bloods had not been sent out properly due to packaging from the courier so i need to go back on monday to have them redone!!!!  I'm already 2 weeks late now because of that bloody ash cloud and now this!!!! SO SO SO typical. I'm really upset and worried that something will b wrong and i wont b able to try fix it in time for my tx. I am due to start stimming when my AF shows (which is due tomorrow) what should i do? should i phone Dr Gorgy and ask what he thinks? or should i just wait and see what the test results show?? 

Berry xxx


----------



## berry55

niccad - great news on ur results! did u do anything else to help ur TNFa come down apart from the humira? xxx


----------



## ells

Niccard - thats great results!!  You must be dead chuffed, that is some drop.  Keep us posted on how you get on with your cycle.  I've heard the ARGC have had some cracking results recently!  As for the worrying, I am more relaxed today as seeing those 2 heartbeats is amazing and so reassuring but I think i am going to be one of those people who will always be worrying   .  Good luck fo this go hun, I am sure it will be your turn      .  This is the one.

Berry, I would phone Dr G and see what he would advise.  At least you would get his expert opinion and know whats best to do hunni.  Good luck.

Ells


----------



## Mousky

Hey hey  

Ells - so wonderful to hear about your scan   I'm afraid if/when I ever reach this stage I'll be someone who always worries as well  

Niccad - that's great news about your levels dropping. did you have any nasty side effects from Humira?  

Sarahh - it was only the blood sample. 

Berry - sorry to hear about your bloods   

 to everyone else.

We're considering having a new SA with Dr G and I'm wondering what are other tests that can be done? I don't think we've had DNA fragmentation before. I guess we only had a basic SA. Our last one, before IVF, showed only 9% motility   it has been dropping from 33% over the last couple of years and DH is super healthy doesn't drink alcohol, coffee etc. We've also tried vits and it still got worse   We were told by Penny it would get better after the C AB but as you probably know this test is not yet convincing everyone 

Mousky xx


----------



## agate

ShellieG said:


> Cycle with NO vits -
> Count - 180 mil/ml
> Movement - 30% (told this should be over 50%)
> Normal Morphology - 16% (told this needs to be 10-15%)
> 
> Cycle WITH vits and NO alcohol or caffeine
> Count - 1364 mil/ml
> Movement - 62%
> Normal Morphology - 20%


Studies on the effect of antioxidants (plus selenium and zinc) on sperm parameters have shown that they can have a big effect on morphology and motility (which can be associated with DNA fragmentation)- however, if the count is very low, say below 5 mil/ml (remember that your DH's count was already way above normal to begin with - the cutoff for normal is 20 mil/ml), then antioxidants haven't been shown to really make much improvement in count - although even if they just improve morphology and motility that can be enough to make all the difference - even for couples who stay in ICSI territory because the low count doesn't change much/consistently with supplements.

So I guess my bottom line is that any couples who have issues with motility or morphology should definitely try supplements, but if the problem is very low count with normal motility and morphology don't hold your breath waiting for a miracle rise in count.

congratulation on your results there! the total number of normal, motile sperm in that count must be enormous!


----------



## agate

Mousky said:


> I guess we only had a basic SA. Our last one, before IVF, showed only 9% motility  it has been dropping from 33% over the last couple of years and DH is super healthy doesn't drink alcohol, coffee etc. We've also tried vits and it still got worse  We were told by Penny it would get better after the C AB but as you probably know this test is not yet convincing everyone


he's not a really keen cyclist or into saunas or something else that would give 'overheated' testicles is he, and he hasn't shown any signs of infection himself?


----------



## TSP

Mousky - re your Dh's SA I just thought I should share with you that my dh's SAs were also getting worse & worse over the last 2 years despite, vits, no alcohol, no caffeine, juicing etc etc the worst last summer being - 1.4M/ml, 3% normal, 62% Motile.

I tested +ve for hidden C & we needed two courses of antibiotics to get rid of it but now its gone    and while Dh's sperm still isn't top grade sperm it is now even better than it was when we conceived our DD - 15M/ml, 20% normal, 50% motile


----------



## Mousky

Agate - well, he's Dutch so yes he cycled a lot but lately he hardly ever does it. His swabs were always clear, no fevers etc. 

TSP - DH is really hoping his will improve with the ABs as well    we're just not sure we can survive another course of AB if needed    do you remember for how long you've waited before getting another SA? Penny told us to wait 2 months after clearing C but since we're seeing Dr G next week we thought we could get more tests.


----------



## Klingon Princess

does anyone have a price list for the different tests Mr Gorgy does?  I was budgeting for around a thousand but I read on another thread that somone paid over £1700 for tests and thats alot of money.


----------



## shortie66

Evening ladies  

Mind if i join you all  

Going to book an app for dr gorgy tomorrow as just had a failed de cycle with 2 hatching blasts and a whopping triple lining at nearly 10mm   

Does anyone know what the waiting time is for app and approx costs and tests i'll need     We have 2 hatching blast frosties left and after much deliberation and counting of pennies/selling myself on street corners (£2.50 in total  ) we can just scrape in for testing. Scared to death but they gotta be done me thinks, cant bear another failed cycle thinking i wish i'd had them done


----------



## Klingon Princess

Am wondering about cost myself but its fairly easy to get an appointment.  I rang up a few days ago and have an appointment on 24th May, could have had one sooner if I'd wanted it but thats the first day that both DH and I are off work at the same time.


----------



## agate

KP: no he doesn't have a price list unfortunately for the tests (bizarrely - apparently if you go direct to RFU to have them done, some work out cheaper and some more expensive - I think he gets special deals on some but not on others) - and it does depend on which tests you have - I'd be guessing that you won't have as many tests as other ladies probably - because you presumably won't have LAD (£200) if its DS, or DQa tests for either of you (?£300), and no karyotyping for your DH (?£200) for DS and no karyotyping for you if its DE (?£200) - If I remember correctly and you were doing double donor, then I'd guess you will only have cytokine ratio, NK assay, inherited thrombophilia, and possibly chlamydia... but unfortunately I can't remember how much any of these were but I'd guess at £200-£350 each for the first 2 and maybe £200 for the 2nd 2.  At the end of the day, if it goes beyond your budget I'd ask him to put all the tests in order of priority for you and get him to explain what he thinks you will learn from them so you can make a decision on which tests you want to go ahead with... although for the main 3 tests (cytokine ratio, NK assay and inherited thrombophilia) the point is obvious ie., if your TNFa cytokine ratio is high but untreated, or your NK activity is high but untreated you are less likely to get and stay pregnant and if you have one of the inherited thromophiliae and don't treat that, then the same applies.   On the chlamydia front... I think if you have anything in your history that suggests chlamydia in the past (ectopic, PID, hydrosalpinx, blocked tubes, known history of infection in you or DH), I think I'd want it tested to be on the safe side - but its got to be your decision.

Mousky:how are you feeling on the antiBs - is it absolutely terrible?  did you get the anti-sickness/proton pump inhibitor stuff to go with them that Penny suggests and does it not help?

Shortie: you can usually get an appt within a week or so.  Time taken for tests depends on which ones you need.  If you need chlamydia then timing depends on your AF then add a week.  If you need DQa then it can take up to 3 weeks to get the results back.  Re treatment - most of it happens during your fresh/FET cycle - except if you have to have antiBs to clear chlamydia that can take a while - the antiBs take at least 25 days and then you've got to wait for a couple of AFs to retest - and if you have high TNFa and need humira then that is normally given pre-Tx - its often 2 shots 2 weeks apart and then a retest before you Tx (but some ladies need 4 shots (or in extreme cases 6).  If you need LIT then that is normally pre Tx and takes somewhere between 4-10 weeks depending how you go about it (try the LIT FAQ).  The other treatments - IVIG, ILS, clexane, gestone, viagra etc don't start until you start your fresh/FET cycle.

Costs are really difficult to budget for because so much depends on what you need according to the test results - starting from prednisolone (cheap), clexane (about £5 a day), gestone (£5-10 per day), going up to ILs (£285-£350 per drip), LIT (from Eu 600 per shot - usually 2 - not used if you use donor sperm), humira (about £750 for 2 shots) up to IVIG (from £1285 per drip)... and then how things go with the NK retests in early pg as if your NKs don't stay down, Dr G tends to recommend further drips to try and keep the NKs down to sustain the pg.


----------



## vw22

Klingon Princess;
I have had tests and an initial meeting within the last 6 weeks with Dr G and they were;
Consult and immune testing (inc Chicago) £1490.
I think I had the standard but indepth set of tests (see previous post on this board).

Berry;
So sorry you are having so many hurdles to jump even at this stage...
I actually had my tests done with Dr G, but on the day of tests trusted his opinion and had all the treatments (inc IVIg) there and then without any results. I had to come back to spain that day and was about to do a transfer, so couldn't wait for the results. Don't know if that helps.

Vx


----------



## berry55

Hi girls, thanks for all the replys. The thing i'm worried about is that Dr Gorgy has never mentioned having IL or IVIG to me.... this is juts me and my paranoid mind. I might just give him a call tomorrow and see what he says. However... if i get my results (which i will) b4 i have EC is it ok to have a IL on day of ET or day b4?? or would that be a no no??! xxxx


----------



## Klingon Princess

Agate, you mention inherited thrombophilia... is this different to the bog standard thrombophilia panel the NHS do?  Also I think you mentioned on another thread that psoriasis can be counted as an auto immune disease... what is the significance of this, just asking as I have psoriasis and have had it all my life (both parents had it)


----------



## agate

Berry:well... as I see it you have the following options

1) you cycle now without retesting - and maybe don't retest LAD until you get your BFP.  The reasons for doing this would be if you have no intention of postponing your Tx regardless of what the retests say.
2) you retest next week and expect to get the results back sometime during Tx - then if your LAD comes back low then you would probably opt to have LIT again asap in early pg, and if your TNFa comes back still high I guess Dr G might suggest IVIG (or ILs) - but realistically you'd need to have it at least 7 days before ET to give it the most chance to make a difference - not sure where this fits in with your dates - not to say that it wouldn't help if you had it later, but it would probably help more if you had it sooner because having it 7 days before gives it chance to work on your immune system to get the environment right for implantation.
3) you postpone and wait a month until you've got your results - I don't know if this is an option for you or not.

unless, emotionally you already know the answer, I think, in the circumstances you do need to call Dr G and go through it with him.

I am guessing that Dr G was expecting you not to need any drips if the LIT and humira were enough to get your LAD up and your TNFa down... but that he would be expecting to reconsider IVIG/ILS for you if the LAD and TNFa weren't ideal.

Sorry I can't say exactly what to do.


----------



## agate

Klingon Princess said:


> Agate, you mention inherited thrombophilia... is this different to the bog standard thrombophilia panel the NHS do? Also I think you mentioned on another thread that psoriasis can be counted as an auto immune disease... what is the significance of this, just asking as I have psoriasis and have had it all my life (both parents had it)


the thrombophilia panel mainly tests for the physical characteristics of your blood (i.e,. does it appear to clot too quickly that day) - those tests are normally referred to as tests for acquired thrombophilia - whereas the inherited thrombophilia tests are genetic tests for specific genetic conditions that cause (I think 3 different) genetic thrombophilia conditions.

The significance of any autoimmune disease for fertility immune issues is that it is a sign that there is some dysregulation of your immune (inc neuro-endocrine) system. So usually it means that some aspect of your immune system is over-active and/or your body will tend towards an inflammatory state (pro-inflammatory cytokines (chemical messengers) will be high compared to anti-inflammatory cytokines). So from a practical point of view, its a clue that you are more likely to have immune anomalies than the average lady - and from a fertility point of view, you are therefore more likely to have high TNFa or high NKa for example compared to the general population. Having either of these, means that, particularly the older you get (as TNFa and NKa often rise in women as we age), the more likely it is you will have difficulty getting/staying pg - but there are meds that can bring down TNFa and NKa.

So there is nothing specific to psoriasis - just that any autoimmune disease is a flag that you are more likely (but not definitely) to need immune help to get pg than someone who doesn't have any autoimmune diseases.


----------



## berry55

agate- thanks hun   you always always always make me feel better   

I think i will do re-test, wait for results and take it from there. i know i will go ahead with tx no matter what anyway. I'm sure if i re-test monday i will only b on day 3 or 4 of stims (max) so i should have lots of time to have IL b4 ET (i hope!) xxxx


----------



## LV.

Hello gals,

I just had a phone consult with Dr Sher and his recommendations are just as you said Agate. He has recommended intralepids but not  Humira and also thinks we don't need LIT as DP and I haven't had a pregnancy past 8-10 weeks which is when he says the Leukocyte antibodies should start rising (we've never had a pg last that long)  

Quite a quandary to be stuck in the middle of 2 docs saying 2 different things, how do you choose what to do?! I think we are going to follow Sher's advice. I think it's the only thing we can do as he is treating us plus to be perfectly honest with our wedding so close there just isn't enough time to fit in Athens trips! God, I hope this isn't the wrong decision.... Why can't there be a consensus, it feels such a risk but Sher's advice works for our circumstance.  

Thank you so much for your advice, it's been so invaluable

LadyV xxx


----------



## shortie66

Phew my heads spinning     It really is all going over my head im afraid, im wonder if being blonde has anything to do with it. 

Ok couple of questions

What is ivig and whats it used for  

Ditto intralepids  

Ditto humira 

Ditto LIT  

so so confused


----------



## agate

LV:that's basically what Dr S says over and over when ladies with similar situations to yours post their queries which is why I could guess what he would say - Dr G follows Dr B's protocols quite strictly and he was adamant that if you had several failed implantations - so nothing that got past 10-12 weeks but lots that ended much earlier - that could 'add up' to be equivalent to 1 that did.  The other bit of evidence they would probably point to are the studies that showed quite a big increased live birth rate where ladies who had never had a successful pregnancy but had several v early mcs were given LIT.

That said, it would drive you crazy trying to have Tx under both Dr S and Dr G - and they are both v good docs imho - and both seem to have good success rates - so I think you are doing the right thing.


----------



## Cozy

Ladyverte,

it is very confusing when different doctors give you different advice and treatment plans, you never know who is right  .  I find doing your own research and listening to their reasons for doing what they are/are not doing helps me make a decision.

After doing 4 cycles using just steroids for NK cells and uNK cells I read Dr Beers book and he said to use Humira, as did Dr Gorgy. When I went to Athens for LIT, Dr T said the drugs that would make the most difference for me would be the Humira and LIT, he said if I had those, the next cycle would work.. and as it happens he was right. Though it could have been a coincidence  

If you have confidence in Shers protocol and you are cycling with him then it may be easier to go with what he recommends. The only way you will know if it is right for you is to give it a go. Go with which ever protocol you feel is right for you, would your clinic be open to suggestions about treatment?

Cozy


----------



## agate

Shortie: I think you might need to pick up a copy of Dr Beer's book - Is Your Body Baby Friendly.

IVIG: is a solution of human antibodies extracted from donor blood - which comes in bottles that look like fizzy water.  you have it given as a drip during your cycle if you need it.  it helps to regulate the immune system - calm overaggressive things down (mainly NK cells) and increase things that are underactive.

Intralipids - used to do the same thing as IVIG and in the same way - but its made from soyabean oil in saline so is much cheaper. It looks like milk.

Humira: its a drug that blocks TNFa (an inflammatory chemical messenger in the body which is unhelpful for getting and staying pg).  it comes in a pack of 2 syringes (which you give yourself like a stimms injection in the belly flab) and if you need it you often take these 2 weeks apart).

LIT: is a sort of vaccination which is made from (usually your husband's) white blood cells.  it helps to increase how well your body recognises your DH's DNA (because your embryos will have half their DNA from him - and your body needs to recognise that the embryo isn't your DNA 'gone wrong' ("altered self" - treated like cancer - and attacked by the immune system).  There is an FAQ explaining LIT, LAD and DQa on the immunology section.


----------



## Pigloo

Agate

I'm new to all of this and you have posted some replies to me about Thyroid antibodies/pernicous anaemia on the thyroid thread.

Just wondered as me and DP using donor sperm due to MF will i be offered LIT?  

Also as we are on a tight budget is it nec to have every single test done or are there main ones that we could have done?

Pigloo x


----------



## Rose39

Hello ladies - please may I join you? I had my first consult with Dr Gorgy yesterday. As you can see from my ticker, it's been a long and difficult journey and I'm hoping to get some answers as to why I can't get and stay pregnant - I don't think it's down to bad luck as the doctors keep saying! I'm hoping to get to the bottom of why things keep going wrong and I have confidence in Dr G!

Dr G has recommended that I have the immune tests again (I saw Dr S last year but I think that maybe the prednisolone alone was too conservative), and the C-test from Athens plus he's done a swab test. I also asked if I could be put onto thyroxine as there is a school of thought that your TSH should be under 2 and mine is higher than that (though still normal). I have 3 excellent blasts waiting for me in South Africa and so want to really do everything I can to maximise the chances of my next tx working!

Looking forward to getting to know you!

Rose xx


----------



## shortie66

Cheers agate     U are an angel   

Funnily enough i have just sorted myself a book from a certain lady who has recently posted    

Ok whos Dr S       All these doctors, where are they all popping up from


----------



## agate

Pigloo said:


> Just wondered as me and DP using donor sperm due to MF will i be offered LIT?
> 
> Also as we are on a tight budget is it nec to have every single test done or are there main ones that we could have done?


You are unlikely to bother having LAD test or DQa tests because of using donor sperm... and for the same reason LIT is unlikely to be suggested to you - there is a discussion about why this is on the LIT FAQ on the immunology section.

The main chicago tests are NK assay, cytokine ratio and inherited thrombophilias (LAD and DQa are normally included in the main tests - but don't really make sense to do for donor sperm) - I can't really think of any obvious circumstances where these tests would not be pretty important. When you see Dr G, he will go through your history and then recommend the tests he thinks you should have (then its up to you which ones you decide to go ahead with - so you can ask more questions about the tests he suggests to help you make up your mind)- although you will get better value from the appt if you read up first and go armed with questions because sometimes there are tests that might really help you but if you don't ask about them he might not mention them to you e.g,. if you have had multiple miscarriages you might want to think about karyotyping (but try and get your GP to do it to save the £), or chlamydia

Shortie: Dr S on here is usually Dr Sher at SIRM clinic in Las Vegas but I think Rose must mean Dr S h e h a t a (a pretty unpopular doc on FF - so much so that FF seems to delete his name - but I don't know the details). Dr B is Dr Beer (from the Beer centre, but deceased now). Dr T is either Dr Tsagaris in Athens (or sometimes people mean Dr Taranassi at ARGC london). Dr N is Dr Ndukwe at Care in Notts.

Rose: welcome.


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## shortie66

agate said:


> Shortie: Dr S on here is usually Dr Sher at SIRM clinic in Las Vegas but I think Rose must mean Dr S h e h a t a (a pretty unpopular doc on FF - so much so that FF seems to delete his name - but I don't know the details). Dr B is Dr Beer (from the Beer centre, but deceased now). Dr T is either Dr Tsagaris in Athens (or sometimes people mean Dr Taranassi at ARGC london). Dr N is Dr Ndukwe at Care in Notts.


       OMFG i need a drink never been so confused in me life. Are there any tests i wouldnt need seeing as we are using donor eggs


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## Rose39

Agate - you're absolutely correct! I did coincidentally have a phone consultation with Dr Sher earlier this year, which is what helped me to make the decision to move to donor eggs.

Thank you Agate for all your helpful posts - I've been reading some of them in advance of my consultation with Dr Gorgy and they were really useful!  

I would agree that the more you can read up prior to your appointment with Dr G, the better. I had a specific list of questions (that I wrote down beforehand and took with me, as well as photocopies of previous test results) to ensure I'd addressed all my concerns, and I found this worked well. 

Rose xx


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## Pigloo

Agate - thanks so much for the advice, i have learned so much in a week and plan to swot up more by reading Dr Beers book.  I have had karyotyping and chlamydia done as well as HTLV and CMV, thyroid and some of the antibodies for level 1immunes as well as FBC and liver function tests (don't know what i should be looking for on FBC and liver tests?) All ok except the thyroid which is now TSH 3.something?

I have not had multiple miscarriages, I have had one IVF and first time lucky with BFP but not a sticky one  

Rose - I will make a list, i think that's a good idea  

Pigloo x


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## sarahh

Shortie - don't worry hon, you'll catch on soon!!!! 

Shellie - thanks for the info on sperm - we've already seen an expert on sperm and also a consultant urologist to get DH checked out. 

Unfortunately his sample at last IVF was less than 2million per ml so very very low.  Was 6mil per ml when we had DD which was really low but now much worse.  As Agate has said, the vits etc are not really expected to do much but we've thrown all we can at it to see if it has any improvement; the fact that I had latent TB & been on anti-b's for nearly 14 wks has obviously given DH longer to take the vits.  We wouldn't have postponed tx if this hadn't happened.  

Anyone got news about Dr G & LIT I will chase tomorrow.  I'm having 2nd Humira and Intralipids on Friday.  Intralipids my first with [email protected] - cheaper than Dr G and done in the comfort of your own home.  Thank goodness DD is at pre-school - would be an interesting few hours if she wasn't !!!!! 

Just a quick q (sorry Agate, prob for you again, do you do anything else apart from answer our queries?!!) how long after the 2nd Humira can I retest my levels?  Is that the one that is 7-10 days?  Think the results can be quite quick or am I thinking of something else?    Also re: the LIT - if I go down the road of having half / half DH's sperm / DS am I right in thinking that LIT is still important as obv our preference is to use DH's sperm if at all possible?  I take it it won't hinder me if I've had LIT but use DS?  

Right, have loads of paperwork to do so must get on, 

Sarah xx


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## ratsy

Hi klingon princess

I had my immunes tested with DR G in march and mine came in at £1,700 i had what he suggested 

In all fairness to DR G  he saw mine and dps face when he said price and did offer to take some off if we wanted .we said if he thinks we should be tested for things then we will go along with him as like alot of the girls have said hes a guru and i think he really knows his stuff your immune tx wil be tailored to yourself its not one for all so i think no point in cutting corners 

All in all i think so far with immune tests and drugs all in its come to around £7,000 that without the ivf 

I hope this helps  

Hope all you girls are well soz no personals ive had the week from hell ive had since fri 4pm to organise my LIT oh my word ive been booking flights ,hotel dp had no passport and no bloods for LIT (no nothing ) bit of a surprise as i was expecting to do LIT with DR G but hay ho its sent to test us hey  

R   xx


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## ratsy

sarahh 

Akvil told dp on friday if were looking to do LIT  in next couple of weeks DR G said we should go to greece as he hasnt had the LIT licence even approved yet hes missed the meeting coz of ash cloud  

So it could be a couple of weeks before that sorted and then starting up so hes not sure when 

If i was you id consider  going to athens iam next tuesday i didnt want to wait around  

R x


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## agate

shortie: huh?  too many docs?  those are basically the main fertility immune ones known to ladies in the UK (although there are oodles more in the US -  stricker, winger, toth etc... can't remember them all tbh).

I'm not actually trying to confuse you!   it will all make more sense when you have your own results and can start getting your head around what they actually mean for you.

the obvious one that you wouldn't want would be your karyotyping if its DE - but your DH's would still be relevant.
NKa, cytokines, thromobophilias, LAD, DQa, infections would all still be relevant.


Rose: thanks... I do really try to help, honest - its got to be good karma or something.  Sometimes I wonder if Dr G ever knew how hard I try to make this stuff make sense for ladies on here, he'd give me a free consult or something (he wouldn't have a clue which of his ladies I am, if he did read this though) - but I think he's far too busy to ever read this stuff himself.

Sarahh: I think its more like 2-3 weeks before retesting after H but can I suggest you double check with the humira thread ladies?  No it won't do any harm to have LIT if you end up with DS - its just that you do need the blood of the father to do the LAD test - so there is no way to test if LIT is working for you to raise your antipaternal antibodies without his blood.... so yes... it makes sense to do LIT in the hopes that it will be your DH's embryo that goes back, and if it isn't it should either be helpful/neutral for a DS embryo but not unhelpful.

Pigloo: HTLV, CMV, FBC and liver function tests are normally only done in a fertility context in preparation for LIT and they are normally for your DH rather than for you (to make sure he is a safe donor for giving blood to you)... unless I am missing something... but obviously they can't do any harm and maybe you will learn something from the FBC or liver function tests (bear in mind that FBCs can chuck out abnormalities for all sorts of reasons so don't panic if the results say they are abnormal).


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## shortie66

Thanks once again again      Bless you for helping an immune virgin girl so much.  Hopefully will get my Dr Beer book soon and get booked in to see Dr Gorgy week after next hopefully.  Sure i will get there in the end


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## Mousky

Wow, it's been busy here  

Very informative posts, thank you  

A practical question   do we pay Dr G or TDL for the tests? we're still   our insurance will pay part of it but I'm sure if they read "fertility gynae" under Dr G's receipt they'll deny it   

Agate - we've taken Omeprazol for a while, then Penny mentioned it wasn't really necessary for doxycycline so we ended up stopping it   it's not the end of the world but the constant nausea and heavy head (some extras like chest pain and dizziness) are really putting us off   

Sarah - DH's sperm also didn't improve with vits. Actually it got worse but I don't think it had anything to do with that   anyway, I hope you can still fish something   

Rose - I have a plan to be all informed at my appt - I'm even forcing DH to finish Dr Beer's book    - but I must confess I'm pretty clueless towards questions to ask him   re the thyroid issue that's another fight   my cons is perfectly happy with a TSH of 3 something but my endo (together with another doc I see) weren't satisfied with 1.5   Maybe that's because I'm positive for ATAs, though   I must honestly say, I don't feel well with what some docs consider "normal" and I generally feel better with a lower TSH  

Also, reading your posts made me wonder if this is a good time for another SA   We're planning to go for FET and I'm wondering if despite looking "good" our embryos could still have problems related to DH's sperm? Decisions   

Love to all.

ps. yes, Agate, you should get a discount or maybe we should send you a pie or something


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## agate

Mousky said:


> A practical question  do we pay Dr G or TDL for the tests? we're still  our insurance will pay part of it but I'm sure if they read "fertility gynae" under Dr G's receipt they'll deny it


You can usually pay TDL direct for tests that aren't FGA specific (the ones that are FGA specific are things like the NK retest and the LAD, if I remember the form correctly - basically if they are in the TDL lab test manual thing online on the TDL site, then you can pay TDL directly because you can write down the TDL code for them and print off the form from the TDL website). However, Dr G obviously prefers you to have your tests done through him - he must get some some sort of mark up - and some of them are cheaper through him - because he has special deals on particular tests with TDL. Either way, TDL won't send results out to you - they need a referring doc to be named on the form - so your GP or Dr G or other consultant.

I don't know about the insurance - there were a lot of posts about it a while back - but ladies seemed to have some appts with Dr Eskander (because he is BUPA registered - Dr G is not yet), to get him to authorise the tests or something... but nothing sounded straightforward to me. It probably depends on what your insurance policy says and who its with as some definitely do cover fertility investigations but not Tx.


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## niccad

Wow - it's so busy on here... 

Hi Berry – I’ve only been on humira… I have changed my diet to some extent… cut out most sugar and transfats and have been focusing on eating a load of antioxidants. Also been having a load of supplements like tumeric & eskimo oils… 

Mousky - I had some side effects on humira… really bad stomach, shortness of breath, weak ankles and, if I hadn’t changed my eating habits, weight gain.. 

I feel a bit worried that I’ve not had the hidden C test. Waiting for AF now to start stimming and know I’ll be kicking myself if this cycle doesn’t work & I then have the test. Why oh why didn’t I listen more carefully to DrG. When he mentioned it to me it was before there was all the chat on this thread about it so I thought he was talking about a normal C test…. Wish I’d realised… 

Hello to all and welcome to the newbies.. xxx


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## Newday

The test for hidden C it is an STI isn't it?

Dawn


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## agate

Dawn

yes its supposed to be able to pick up chlamydia that has moved up into the uterus and tubes so can no longer be detected lower down but can still be a problem - the normal STI swabs are supposed to be not enough to pick this up unless you test for it very quickly after you catch it before it has a chance to get higher up.


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## TSP

Mousky - the sperm is supposed to be at its best 50 days after you finish the AB course that clears the Chlamydia


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## agate

the full sperm production cycle starting from scratch is supposed to be 90 days - so logically it could take 90 days to produce brand new sperm after getting rid of C etc


Mousky said:


> Wow, it's been busy here
> it's not the end of the world but the constant nausea and heavy head (some extras like chest pain and dizziness) are really putting us off
> 
> Sarah - DH's sperm also didn't improve with vits. Actually it got worse but I don't think it had anything to do with that  anyway, I hope you can still fish something
> 
> Also, reading your posts made me wonder if this is a good time for another SA  We're planning to go for FET and I'm wondering if despite looking "good" our embryos could still have problems related to DH's sperm? Decisions


well, I can't think of anything that would help that, except maybe something like stemetil, buccastem or another antiemetic.

There is definitely a correlation between sperm DNA fragmentation and pg failure inc mc- but there is (according to Dr Sher) still a good live birth rate with ICSI if DNA fragmentation and sperm count is the only problem. Consequently he seems to very much downplay sperm being a problem (except where the count and morphology and motility are very bad, or where karyotyping reveals a problem).


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## TSP

Yes, sperm production takes 90 days but Penny @ Serum, has found its at its best 50 days after finishing the AB's - that's what she told me


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## Mousky

Agate - in case of DNA fragmentation, would we still get a good fertilization rate? our embryos seemed to look good   obviously this is something to think about before FET. re the insurance, we'll just have to check with Dr G. I've read some of the BUPA posts but I'd guess it doesn't apply to ours. They won't pay for tx or for investigations related to IF   I guess, unless, it says there with all the letters it's a infertility investigation, they should cover at least part of it   How does it work with paying Dr G, btw? Will he send us a bill?

TSP - yes, she told us 2 months but we're going to see Dr G next week so we thought we could have another SA. I'm pretty sure our cons will not want to do it again coz he can't spend more money "from the society"    anyway, we still have sometime to think about it  

Niccad - why can't we just have a baby the "normal" way?   Here's hoping your cycle is successful


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## Mandchris

Hi all

I tend to lurk on this board - but wanted to let you knw that Dr Gorgy has just emailed me and sai he has the licence to do LIT.
Good luck eveyone
MAndy xxxxxxx


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## TSP

Hoorah!!! Dr G finally got his licence, that at least gives us the choice about where we go for LIT


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## CLS

Hi Ladies,

After reading the good news below about Dr. G getting his license for LIT, I called Akvil at Dr. G's office. She confirmed that yes, he finally has his license. He is looking to run them every Thursday but is still in the process of working out the finer details such as cost, how many people per day etc.

She thinks they will be up and running within the next few weeks which is good news as I was about to start planning an Athens trip for 18 May. 

She is compiling a list of people to contact once they know more details.

Good news for everyone!


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## agate

Mousky said:


> Agate - in case of DNA fragmentation, would we still get a good fertilization rate? our embryos seemed to look good
> 
> How does it work with paying Dr G, btw? Will he send us a bill?


yes, apparently higher rates of sperm DNA fragmentation are associated with lower IVF fert rates. but just because there is an association it doesn't mean that there will always be a lower fert rate if DNA frag is high. The only way to definitively test whether embryos are ok or not is to PGD/array CGH them unforunately. Good looking embryos are more likely to be genetically competent than unsymmetrial fragmented ones - but unfortunately some beautiful looking embryos are still genetically no good.


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## Clarebaby

Hi All

That's fantastic news about the LIT, having failed to even get my TB test done at the hopital today (they needed to order it in!) I thought my chances of making it to Athens at the right time were looking slim!!

Berry - so sorry to hear about your missing results 



niccad said:


> Wow - it's so busy on here...
> 
> Hi Berry  Ive only been on humira I have changed my diet to some extent cut out most sugar and transfats and have been focusing on eating a load of antioxidants. Also been having a load of supplements like tumeric & eskimo oils
> 
> Mous


What are eskimo oils - is there a specific brand??


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## ells

Clarebaby,  Eskimo Oils are the brand name and they are fish oils which are high quality and safe in pregnancy.  Hope this helps.

Ells


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## Peanuts

Hi girls  

Not been posting on here, but have been lurking to keep up wiht you all.
Just wanted to pop on and send you all a big hug    

All this immune stuff can be very daunting, but the girls on here are great at giving advice and support - especially our wonderful Agate!!  I think she deserves a job with DrG! 

Take care and good luck where ever you are with your journey      
Dxx


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## Bling1975

I have now made an appointment with Dr G to discuss treatment for our transfer and to do the retests of LAD and TNF-a. How quickly do you think we can have the results? I am taking the test on wednesday and I am supposed to start injections around sunday (if AF is punctual). I just pray that the results are good enough to go ahead, otherwise we have to wait until september as the clinic close for the summer.


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## agate

if the blood is taken on a wed, then results are hopefully back on friday night ready for sat morning - if not, hopefully monday.


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## berry55

OMG girls, my AF is still late!!!!!!!!!!!!!!!!!!!!!!!!! I have phoned my clinic and they have told me to go in to see them today as i had postrap injection 2 weeks ago and my af should have came. Has anybody else ever had late AF after taking humira and LIT This is my 2nd month in a row of being so late. Usually i am always on time, never go past 32 days. I'm getting worried now. Starting to think i'm not ovulating anymore.....   

Berry xxx


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## agate

Berry - if you are not pg, then its probably stress - stress drops your dopamine level which raises your prolactin which slows your cycle down.  You haven't exactly had things easy the last couple of months and even on down reg drugs, you need your body to finish off the last cycle before AF will definitely turn up as if you still have an active follicle or corpus luteum (the follicle which has just ovulated in this cycle) that will be producing hormones which can keep your AF away.


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## sarahh

Evening ladies,  well I phoned Dr G today and was pleased to learn about his LIT licence before I read it on here this eve!!!!  Glad others have found out too.  

However, my discussion with Dr G was just hysterical, don't know if he was doing something else at the same time but it was like we were having two completely different discussions!!!  He ended up by saying "look, just do the C test, wait for the result then come & see me, things are getting a bit messy!"!!!!!!!!!!!!  He seemed to have no idea who I was and despite having told him I'd taken my second Humira and had Intralipids with [email protected] this morning then he said something about taking my second Humira so I repeated and said I've had it this morning and then he said again something about when you take your second Humira.... so I just gave up ... perhaps i'll try next week or come up with my own plan!!!!!!!!!      

Anyway, stopping the bcp tomorrow, wait for bleed (he said it was ok to use the withdrawal bleed for the C test), send off test then I will prob go in about 10 days time for TNF-a retest.  Then take it from there!!!!!!  

BTW he said to me that if the C test was positive it would delay things by about 3 1/2 weeks anyway but from reading on here I thought it would be much longer   Oh well, one step at a time eh ladies.  

Agate, yes, think that Dr G should give you a seond round of IVF when you come back in a year or two looking for a sibling for baby bump!!! Perhaps we could start a petition for you?!!  

Well hope everyone has a lovely bank holiday weekend. I'm feeling a little wiped out after the Humira & Intralipids today but then I'm knackered at the moment anyway!!  

Sarah x


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## Louiseb26

Hi Sarahh

I'm so with you on the Dr G front.He was the same with me on Tuesday   

I do find that he does not explain things properly.I did tell him that alot of ladies coming through the door are really up to date on the all the immune side of things.And not all of us know the ins and outs of everything,so sometimes we need things explained in detail.I don't think he liked that much.

Good luck with everything lovely.Hope little Millie is doing well  

Lou xx


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## Mousky

Ladies,

Is he like that in real life as well? I've heard about some   communication issues before   
I'm trying to figure out what are the relevant things to tell him   the problem is I have no real data with me, the Belgian doctors are so secretive   we'll just have to go with what I was told  

Sarah - 3 1/2 weeks? does he have a different protocol in mind? the AB tx we got from Greece were 3 weeks of meds, 6 weeks wait, retest, hopefully negative, if not, repeat it all over again   I'm sorry to hear you're not feeling so good. Hopefully it will all be worthy   

 to all.


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## Skybreeze

*New home this way >>> *http://www.fertilityfriends.co.uk/forum/index.php?topic=235720.new#new


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