# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 5



## dakota

New home ladies,


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## Pinpin

I'm first, i'm first !!!


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## ells

Hi everyone, 

just getting my link.

Hope you are all okay.

Ells


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## positivelyhopeful

Hi everyone, I'm not to sure if this is right place to post, apologies if it's not  

I'm in need of your expertise  

First a brief history.... TTC since May 2005,
Unexplained infertility 
1st IUI January 2007 BFN
2nd IUI March 2007 BFP, m/c 11 weeks (blighted ovum seen at 8 week scan)  
3rd IUI BFN November 2007 
4th IUI BFP January 2008. m/c 10 weeks (blighted ovum seen at 7 week scan)  
1st IVF September 2008, 7 eggs, only 1 fertilised BFN  
2nd IVF March 2009 8 eggs, 3 fertilised 2x 3day embryos BFP, m/c 8 weeks (blighted ovum seen at 6 week scan)

DH and I have had all test done (level 1, 2, karyotype, immunology etc) and all have come back normal except My NKassay.
This has come back at 7.7% (.77) which I have been told is borderline elevated (high) Is this really the case as everything I've googled says NK need to be below 10-15%

Our DQ alpha tests reveled

Me... 0101, 0505

DH alpha... 0201, 0301

DH beta...0302, 0303

What do these mean I realise we don't have a match which is good but have read on another site that if the male has an alpha number 0201 he has a 50% chance of producing a blighted ovum. Has anyone else heard of this

Any information , advice or help anyone has will be greatly recieved.

We have a follow up appointment with consultant in 2 weeks but I'm going crazy    thinking about it!

Thanks so much for your help

Chaz


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## Toffee Girl

Hi Chaz and Welcome

I am sure the ladies will set you straight and help with their thoughts over the course of the day.

Just a quick post to say that I am afraid it was a BFN for me too last night.  I need to call Dr Gorgy today and have a proper chat with him but I gather my HCG was something like 1.2.  It's no surprise really as lots of things on this cycle didn't come together terribly well and given that - my TNF went up to 56 with Humira and my LAD levels went backwards with LIT, I have a womb lining that looks like a strawberry, and we had 18 eggs and only 2 fertilised, the odds were stacked against us.

I would be grateful if people could tell me what they have heard about the pros and cons of being given the full 600 ius of stims drugs.  It is the first time I have done this on a cycle (previously we have stopped at 450) and I had been told by another consultant that there was evidence that 600 just produces eggs or embryos that are rubbish.  We had first four days on 600 and then I think my penultimate dose was also 600.  With 15 eggs arresting at 'Metaphase II' ie doing nothing, it makes me think that I don't want such high doses again.  All thoughts and info welcome!

Choice - please do keep posting.  Having someone like you on board is really important for getting people started off on the right track.  We musn't lose such a valuable asset!!


Sarah - so sorry your news wasn't good.  It's pants.  But you just have to keep going - keep shedding those bad TNF-a exposed eggs and get to the good ones next time  


Thanks for all your thoughts xx


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## Cozy

Toffee girl,

so sorry to read you got a BFN   

I hope Dr G can shed some light on things for you

Take care

Cozy


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## Toffee Girl

Hello me Again

Can someone please remind me - how long does it take to get LAD and TNF-a test results back?

Thanks Cozy 


Toffee Girl x


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## Sprinkles

Hi girlies

Firstly so sorry sarahh and toffeegirl my heart goes out to you  

Ells glad you're feeling a little better hun

Cozy have a great holiday

Cath have a safe trip back

Choice others have said it all really this thread isnt this thread without you and also please dont get upset you need to stay chilled for your bubs  

hi everyone else, happy weekend.....

I did my second humira last night and will be testing week on Monday, well getting my blood drawn up north and shipping down to tdl for Tuesday 9am.  Already have my prescription for the second lot as DrG doesnt think 2 will be enough.

Have been to get my euros this morning, the exchange rate is pants! and then need to pack and I cant believe the weather forecast for athens next week is rain!!! thought I'd be able to get away from it.


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## lalaby123

Sarah and toffeegirl so sorry to hear your news it is very dissappointing I really feel for u xxx

choice you CANT leave us we need u! 

Hi to everyone wil post more wen bak from hold xxx


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## Trueblood

BFN for me too.  Mr G still insists that I check my HCG levels although it does sound as things have not worked.

Went for blood test at DGH as private hospitals refused to do and results still not received by Mr G even though blood test was on Thursday.

Thinking of calling it day and looking at the adoption route.  I find all this to stressfull and with no guarantees of success.  Was very optimistic to begin with as we were using donor eggs and had done every test under the sun.  

Even with all the drugs I was taking ((Viagra 2 x 50mg), 2 Estraderm TTS 100 Patches, Asprin, Progynova x 4) lining only reached 7mm.

DH want's to have another go using Donor Eggs from Cyprus as he has contacts there but i'm not getting any younger.






Me 35 DH 35
Endo 2004 (12 x 20 cm cyst, Frozen Pelvis, and 1 ovary damaged)
1st IVF 2005 BFN
Went to ARGC 2007
Mr Gorgy 2008
Tubes cut 2009
ICIS Aug 08 BFN


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## ells

Toffee girl   so sorry hun.  I hope that you can get some useful answers and info from Dr G.  

CathDio, sorry to hear you news to   .  

Evening to everyone.  Cant stop as have to get dinner on the go as we have some friends coming over.  Hope everyone is making the most of their weekends.

Ells


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## Donkey

Toffee Girl and Cathdio, so sorry to hear your news  

Choice, you can't leave, we all rely on your knowledge.

It was back to school this week which I found quite hard due to my appendix op.  I'm sure next week will be easier when I get into the swing of things!

Lots of love
Donkey xx


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## Cath34

Hi all, well I'm back safely from my hols. Thanks all for your welcome home wishes, I only wish I wanted to come back!!!!

Sarah -   hon I'm really gutted for you, I really did think you would have made it, but hey keep positive maybe with a few tweaks from Dr G you'll get there next cycle? I know what you are feeling now is pretty **** and believe me I have felt the same but take time to recover and then make a plan, like me!!! We like to plan ahead dont we hon?  Have you spoken to Dr G?

Toffee Girl - I am so sorry too. I really hope Dr G gets his thinking cap on for you too hon. We all need answers dont we?  
My repeat LAD and TNF and NK Assay came back within 4 days.

Cathdio - I'm sorry for your news too. I have severe endo and we are the same age hon!! I have faith in Dr G, I'm sure he will come up trumps for us all. 

Choice - how are you doing lovely? I just missed you at clinic today. Carissa told me you were on your way but I had to go get bloods done and then drive home as I'd just stepped off the plane after no sleep!. (I wasn't looking my best  ) How did it go with you today?

Cozy - Have a great holiday, it will do the trick  

Sprinlkes - Good luck in Greece. Dr G is going week after next to a conference and to meet Dr T.

By the way ladies Dr G told me today that he has had a protocol from Beer for LIT. He is reading through it, its massive!!!! All being well, he will do it. Yippee, no more Greece for everyone hopefully.


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## Lincs Jax

Hello ladies, 

I hope you don't mind me joining the thread, but I have now decided to try Dr G after being elswhere.

Toffee, I'm sorry for your BFN,   but can I ask why are you on a high dose if you produce so many eggs?  Will be interesting to here if there is any evidence re a high dose, as I was told by various top consultants that it has no effect and I always wondered otherwise after being on 675!  But I'm a cr*p responder.  My LAD and TNF took a few days to come back too.

Cath34, we spoke on the other bibiosy thread, good luck with you next go hun  

Cathdio, sorry for your BFN too,   you are still a spring chicken, I wish I was 35.  It is so stressful and I sometimes think of adoption too.

Has anyone had a bibopsy under Dr G?

Jxxx


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## Pinpin

Hi girlies

Toffee - so sorry about your BFN hun   When will you be seeing Dr G to follow up? Hopefully he will know exactly what to do in order to get you BFP on the very next cycle.

Cathdio - sorry about your BFN too   I would just listen to what Dr G has to say regarding another go. If he thought there was no point in doing another cycle then i'm sure he'd tell you. You are still very young at 35 so that is a positive thing.

Lincs - welcome to the thread! Sorry I can't help with your question re- bibiosy as I don't even know what it is but hopefully comeone a little more knowledgeable will come along shortly to answer that for you  

Cath34 - i hope you are still chilled from your hols, i hope you had a lovely time away, it is good to get away from it ll every now an dthen isn't it. Fab news about Dr G making progress with the donor LIT.

Ells - I hope your diner was nice yesterday  

Chaz - sorry I can't help with the DQ alpha question. I know that either Omni or Choice would be the best people to answer that as they are both so knowledgeable on the subject. 

Sprinkles - It sounds like you are right behind me with your Humira injections. I had my second one 11 days ago and did my retest last wednesday and will call tomorrow to see if results are back.  I am under no illusion that with my high levels they won't be have come right down with only 2 injections however I would quite like not to have anymore as I have been feeling quite nauseous the best part of the week and wonder if this is a side effet   Can I ask you what your initial level was?

Donkey - how are you doing? I hope the appendix op is healing well  

Cozy - for TNFa results Dr G had told me that if I retested on wednesday I could call the following monday/tuesday.

Lalaby - how are you?

As for me well I can't help but thinking that my first IVF cycle will not work despite having done all we could being proactive with immune testing and treatment. I fear that because of my high TNFa and the fact that I coudln't postpon the IVf cycle due to it being on the NHS I'm not giving it enough time for humira to get my levels down enough  
I pray this will be enough we started humira on 13/08 and I start stimming on 30/09 so may have enough time to do another 2 humira shots if needed but i read in Dr Beer's book that humira has the optimum effect 17.4 weeks after first injection and my ET should be 9 weeks after my first injection maybe a bit too soon... 
I just want to give this my best shot and I know everyone else on here is doing exactly the same throwing everything they have at each attempt and despite trying the very best with one of the best Dr there are still so many BFNs recently   it's just not fair.

Good luck to all ladies

Pinpin x


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## Sprinkles

hi and welcome chazwoz

cathdio so sorry for your BFN hun  

pinpin does sound like we are at similar stages with humira, I'll be in same situation as you as well as I cant postpone my nhs cycle much longer as the big 40 is looming and they wont treat me after that.  Think that I would end up doing my fourth humira, which I probably will need same week as starting stimming, dont know if thats even allowed to be honest but am just going with it at the moment.  My original TNF level was 51.9 so pretty high am sending bloods down a week on monday hopefully and then results will quickly come back I hope as am going to order the second prescription anyways ready to take once the results back.

Have just finished packing for greece, am absolutely scared to death if I'm honest and my furbaby has come down sick this morning, dont know whats wrong with her but am going to have to leave her with DH to take to vets if she doesnt improve any.

See you in a few days ladies x


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## Angels4Me

Hi all

just wondering if anyone here knows if dr gorgy will do a mild ivf and not sure how i will react or if i need the regular stimulation level of drugs. I will see him again for immune drugs but wondered if meanwhile anyone here knows

thank you
angels


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## Toffee Girl

Hiya All

Thanks for all your kind thoughts and wishes   - am popping in to see Dr G on Thursday this week.  He did say that two months off between cycles would be better than one month - does anyone know if this is typical for him or just specific to my case?  Our next go will therefore be November.  Now that I have got used to the idea I am happy that this will give me time to quietly sort out my levels and have more LIT if needed.

Lincs Jax - I was treated as a Premature Ovarian Failure case by my other clinic who decided I needed 450 ius to get the response they wanted (which was 12 eggs each time).  So maybe Dr G looked at my IVf cycle history and then my AMH of 7.3, FSH of 10.7 or so this cycle, and perhaps he decided that's what was necessary.  I have never produced anything like 18 eggs before, but given that 15 were useless, it just demonstrates that it is quality that quantity that counts.  Can't help thinking the high doses may have been detrimental to the eggs.

Also, I had an endometrial biopsy with Dr G that was sent off to the Beer Centre for tests for uterine NK cells.  I forgot to take nurofen etc in advance - it wasn't a pleasant experience, but it didn't worry me.  However, I think other ladies have had a far worse time...

All the best

Toffee Girl xx


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## Kazzie40

Hi girls, I have only posted one time before which was after I met Sarah and Cath in Dr. Gorgys' Clinic when I went there for the first time.

I was on holiday ( Cath I didn't want to come back either  ) whilst waiting for test results, then couldn't get to the clinic until the 26th August so had a delay in getting them. 

Hello Ally and Donkey, I didn't realise you two were also going through this process too   - I really hope this can help us all get some answers to why we haven't conceived before this.

Before I say about my test results I wanted to say sorry Sarah and Toffee about your BFN's  

In one way I prayed I would come out 'normal' as am scared of the expense of the drugs but on the other hand felt deep down that 'immunes' were probably the issue and I wasn't disappointed   

My test results were as follows:

NK Assay ( % killed panel )

Name                    Result

50:1                    28.0 
25:1                    23.3
12.5.1                  15.4

IgG cone 12.5 50:1      17.2
IgG cone 12.5 25:1      14.2
IgG cone 6.25 50:1      19.2
IgG cone 6.25 25:1      16.0    

%CD3                    86.2
%CD19                    2.1
%CD56                    10.4
%CD19+cells,CD5+        23.8

NK assay w/Intralipid

Name                                Result

50:1 W/Intralipid 1.5 mg/ml        18.4    
25:1 W/Intralipid 1.5 mg/ml        16.2

TNF-a:IL-10 (CD3+CD4) 59.8
TNF-a:IL-10 (CD3+CD4) 34.2

Lekocyte Antibody Detection was fine as was our DQ Alpha Genotypes. 

I was positive (Heterozygote) for the MTHFR C677T Mutation but negative for Factor 11 Mutation-Prothrombin factor 11 G20210A mutation and Factor V (Leiden) Factor V G1691A Mutation.


I don't entirely understand it yet other then the fact that my NK cells are extremely high and so are my TNF ones too.

Dr. Gorgy has said I need IVIg especially if doing an IVF cycle but if I want to try naturally (which I currently would like to as can't face another IVF at the moment) he would recommend a treatment of intralipids each natural cycle. I had a first treatment of intralipids on 26th August the day I went there.


Ideally if I had the money he would even want me on IVIg trying naturally but said that the intralipids should help. Can you girls reassure me that this should indeed be sufficient? I will do IVIg on an IVF cycle or if I get pregnant (miracle) but am hoping this will help in the meantime.

Dr. Gorgy said I will also need Humira injections 40mg and has prescribed a box of two, I took the first last Wednesday 2nd Sept and will take the other next Wednesday but he suspects I will need the four. 

He has also prescribed 25mg of predisolone and 40mg clexane to be taken from CD 7 and cyclogest pessaries to be taken from ovulation or egg collection.

I also have an underactive thyroid gland which is treated with 100mg of thyroxine and also have a luteal phase defect so don't know how these affect everything? my TSH was low but T4 was ok at last test result. I was taking an iodine supplement but Dr. Gorgy suggested stopping that to hopefully alter my TSH back to a better level rather then changing my meds. He also suggested I take 100mg of DHEA per day.

Anyway I feel a bit overwhelmed by all this but like yourselves am desperate for a baby so going to give it my best.

I must admit I felt pretty awful for a fair few days after taking the Humira, I felt quite hot and extremely tired and quite nauseous as well so not looking forward to next weeks one especially when it is likely I will need more as well, anyone else feel this way or any another way on it?

I also wanted to ask a few questions about Dr. Gorgy's clinic so I can plan my expentiture a bit better, if not pregnant this cycle ( not likely)  I will have to go back to the clinic for another intralipid treatment, will I get charged for seeing him (how much) and him setting it up or is that included in the £350 charge for the treatment?

Also would that be the same when I need to do the IVIG which I believe is £1500? Can we buy this ourselves and have it set up at home for cheaper or is it too difficult/impossible to arrange it all?  

I am also considering doing an IVF with him when I can face another, I went to Turkey previously because of needing PGD but as only had one egg last cycle am considering not bothering with that part due to likely poor response.

It says an ICSI cycle is £2,900 which includes the scans but excluding drugs, HFEA fee and blood tests. Can anyone tell me how much the HFEA fee is and how much the blood tests are and if there are any more hidden costs on top like being charged for his consultation each time? I would like to see if it is possible to stretch to a cycle here with him minus the PGD.

Anyhoos thats where Im at at the moment, looking forward to getting to know you all better, any advice would be appreciated, also looking forward to understanding the immunes in more depth too!!

Best of luck girls, and hope to bump into more of you at the clinic!

Take care love Karen xxx


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## Angels4Me

Hi Kazzie

I found it took a while to understand all the immune stuff. dont know it all but Dr beers book explained it to me.

Dr gorgy does charge every time you visit but he did no charge me a cons fee when having intralipids just the £350.

Im 44 and ttc conceive no.1

I havnt taken humira yet(although have read chances are better with it) but started the dhea about 3 wks ago. Its really hard at our age eh. Im worried im wasting more time when I maybe need to be going straight to DE.

I have been having termuric every morning in my fertility shake and fish oils to try to redue my TNF:a....not had a test since first one his year so dont know if its worked. the yahoo group has lots of Q&A on immunes. Its called reproductive immunology.

Im not totally sure if immunes are my main issue but my TNF was 30 and nk cells 23.  Im having a special chlamydia test to see if this is causing nk cells as this is the belief of the serum clinic, if chlamydia comes back negative in UK there can still be chlamydia in your system dormant for years.

I need to take dhea for a couple more months will then visit dr g again and may cycle with him


all the best
angels


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## sarahh

Hi Karen, nice to hear from you again.  Sorry about your results - bummer.  But at least you have an answer why things weren't working so that is kind of good! 

IVIG is dependent on weight - its £1250 under 11 stone, but not sure of cost over that weight.  You can have IVIG through healthcare at home but I believe it is slightly more expensive. 

Dr G will charge you £90 for each time you see him (unless just having a drip etc.) until you start on an actual cycle of IVF when he doesn't then charge this fee.  

Good luck with the Humira - I need it but can't / shouldn't take it cos of past cancer.  At least your LAD is ok so no trips to Greece for you!!  And you haven't got the dreaded Gestone - a literal pain in the backside!  So thats another plus.  See if you can get the Clexane prescribed by your GP.  

Angels 4 me - what is your fertility shake?!   

Can someone let me know what they think about the fish oils - I am taking Zita West's Vital DHA capsules that have fish oil in - is it better to have the fish oil itself - if so which one do you use / where is it from / what dose?  

Ells - were you at the clinic today?  What time?  I came in around 11ish were you just going in? I wasn't really paying much attention but I know Dr G was about to see someone.


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## sarahh

Sorry my computer was having a minor wobbly then so I posted before finishing so I didn't lose it all   

Had my repeat bloods today so we'll see what is going on......  Follow up wk after next.  

Does anyone use an acupuncturist other than Zita West around the clinic? 

Sarah x


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## Kazzie40

Hi girls, thanks for your replies. I have been having luteal support HCG shots, the last one I took last week on Monday the 31st August (5000iu) I asked Dr. Gorgy when I could do a pregnancy test and he said one week later.

I did a few HPT's today and got a very faint positive ( and its really really very faint) but am not excited as this has happened before to turn negative a few days later plus I am not really sure whether it could still be the HCG in my system despite the fact that in most people it should have gone by now.

I didn't manage to speak to Dr. Gorgy today but will try tomorrow, I believe you should have IVIg if pregnant but don't want to run off on a tangent spending £1500 ( in case this is remains of synthetic HCG or a chemical.)

Sarah, if only I was under 11 stone, that would save me £250 by the looks of it! ( maybe a bit more incentive to shed the pounds but think I'd probably have to lose a limb or two to make it back down to 11 again nowadays  ) which was my pre pregnancy weight.

I know at 14DPO the test should have a much stronger line then this so suspect its one of the above scenarios.

Can anyone advise what I need to do if the line is stronger tomorrow by a miracle, will I need to hoof it quickly to London for IVIg immediately?  I work on Thursdays and Fridays and would need to arrange to have Thursday off to go there.

Thanks for any help

love Karen xxx


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## Cath34

Hi again,

Have you just done a cycle? I am confused? Or tried naturally?
If you have a positive Dr G will say IVIG asap I would think, if you have been having it anyway?


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## siheilwli

Did my first humira jab this morning. Anyone know how much the follow up test is cost-wise a week after the second jab?
thanks.
C


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## Pinpin

Hi girls,

Sihellwli - the retest costs £350. Good luck I hoe it works for you

As for me I had the results of my retest of my TNFa today and found out to my surprise that my levels have decreased from 50.4 to 27   after too injections !  
Dr G said he was very happy with this and now within the normal range so just need to stay there and he said to have a further 2 injections to make sure they don't go back up before i start stimming.
Sprinkles - I hope it's all gone well in Greece and keep my fingers crossed that your retest of TNFa will be good  

I wondered if anyone could tell when I shoudl be starting the gestone and clexane? I forgot to ask Dr G today and I know he's busy so don't want to disturb him with another phone call... 
If anyone could shed some light it would be much appreciated.

Pinpin x


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## ells

Evening ladies,

Pinpin, thats great news on the TNF levels - well done hun.  I cant help on your other query I am sure someone will come on soon and tell you the answer   .

Choice, hope you are well and enjoying being pg.

Sarah, We were in with Dr G at about 10.25am and came out about 11.10ish??  Where you sat on the sofa nearest the door?  

Sprinkles, how did you get on in Greece?

Cath how are you hun?  

TG, hope you are okay hun   .

Hello to everyone else.

Well our appointment went well yesterday.  Doctor G was lovely, felt very comfortable with him.  He definitely thinks that there is something going on with immune issues.  He sent us off for blood tests 3 doors away.  I got a bit confused about the BUPA side of things though.  We had to pay the bill and then make an appointment to see the other doctor there to get the money back from BUPA   .  I will have to ask him about that again when we go up to get our results.  He told us to get our Karotyping done - I think thats the gene thing - and he wants me to have a hysteroscopy to have a look at things in there.  He was really surprised that I haven't had one   .  He was also really surprised that we only had 4 eggs and 2 embies on our last fresh go too considering we had such good numbers on our first attempt, he said that it was highly unusual and thinks maybe I didnt have the right amount of stimming drugs    .  He has said that as a minimum I will need heparin, asprin and steriods, which is what I was expecting him to say.  DH was impressed with how much I understood about it all   but I did have to go check my book a few times on the way home   .  Our GP didnt know the karotyping test was so is reading up on it and said for me to collect the blood test forms tomorrow morning.  I forgot to tell him that I have to have the scope, but I think I should be able to have that done under BUPA.  I will leave another message for him tomorrow morning   .  I am sure that he regrets taking me on as his patient I have spoken to him every week for the last 4   - we are going to be sending Christmas cards at this rate   .  

Both DH and I struggled to understand Clarissa   , her accent is very strong and I really had to concentrate on what she was saying. One of the other ladies in the waiting room couldnt understand her either.  We were really lucky as we did not get any interruptions when we were with Dr G and we didnt feel rushed, you were all right when you said he was a very kind and caring man.  

Its a good feeling now to know that we have taken this step and at least we can start doing things to help us to achieve our dreams.

Anyway ladies, I hope you are all well.  I am about to head into the shower had a stinky long day today and am totally knackered   .  

Ells


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## Cath34

Ells - Thats really good news, i'm glad you have taken the plunge to go to Dr G. He really is a kind, caring and knowledgeable man. I'm sure you will be happy with him. 

Pippin - great news about your TNF a results. Well done. Re clexane I started it on day 6 of stimms and Gestone and cyclogest doesn't start until day of ovulation/EC or on a frozen cycle you start it 6 days before ET. Hope this helps, but Dr G will tell you for sure.

Sprinkles - Hope Greece went well, was it chaos there?!!!  
Cozy did you go too?

I am back with Dr G tomorrow for a scan and IVIG!!! Bang goes another few grand!!!!

Cath xx


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## omni

Dear Toffee - sorry to hear your news. Some people do better on lower doses but it is a trade off. For example in America they tend to go for high doses. In Europe less so. It shouldn't necessarily mean you get less good ones overall.

It may be you do better on lower doses. Occasionally it is difficult to pinpoint what went wrong. I know I had one cycle where there was 12 mature eggs and zero fertilisation yet every other single cycle had 90-95% fertilisation (and as you know I've had many). I always suspected there was something wrong with the way the sperm was handled but really had no evidence of this. I did not have a TNFa problem at that time but seem to remember that you had high TNF before this cycle. I am not saying below is the reason for your problem but perhaps waiting a bit longer before your next cycle (and trying naturally in the meantime) as well as considering going back to lower doses may not do any harm. Below is an answer I kept from the yahoo site from Dr Beer:

Dr. Alan Beer:	The highest success rate is in those individuals that have failed three IVFs, who, after the immune treatment, get pregnant on their own. And the peak time of that happening is 17.4 weeks after the immune treatment is started. So, if the immune system has caused some damage to the eggs, it appears that it takes at least three to maybe four months for this to heal, but these are all individuals that had failed IVF three times, they went back to IVF after treatment, failed again and then again, and I told them to give up and these are individuals who started showing up pregnant on their on the average of 17.4 weeks after the treatment was begun. So now the advice I give to patients, who have high numbers, is to have the treatment, give your body time to heal and then go for it when we know that you are in a safe window of opportunity.

Omni xx


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## Sprinkles

Yassas girlies....

Well back from Greece in one piece.  All went fine, its a tiring exercise but transportation to and from clinic was easy enough thanks to the info on here, and stayed in a nice hotel, and had some quality time with my mum which I dont get too much.  Dr T is lovely and his nurses, whilst not speaking a lot of english, were nice also.  Procedure itself not something I'd rave about if I'm honest, was a little painful but over very quickly.  Had twelve injections from two syringes and now have raised red area which wasnt initially itchy but this afternoon has certainly made up for lost time, so fingers crossed its working... ^fingers crossed^  Back again on 6th October for a booster.  Am also waiting for blood form to arrive then I can send my bloods down on Monday for testing after my first two humira, fingers crossed I get good results like pinpin.

Hi kazzie40

Well done on first humira siheilwli its not too bad is it

Pinpin fab news on your TNF levels thats brilliant, but you say that DrG says to take another 2 anyways is that to keep them down?

Ells glad your appointment went well, DrG is lovely isnt he.  I think it takes a while to get used to Clarissas accent I have definately found it a lot easier the more I talk to her.

Cath34 good luck for scan tomorrow x

Hi everyone else hope you are all well.  Just a short visit tonight, need to bob off and get ready as have an early birthday party to go to, am 40 in December but am having a joint party with a few folk tonight dont know how long I'll last as am very knackered after whirlwind trip to Athens.


----------



## omni

Hi everyone. Sorry I haven't been around much lately. Had a really busy period with work. 

Hiya Sprinkles, Glad it all went well in Athens. Ichyness is a very good sign. Enjoy your party!

Cathdio - so sorry about your result hun  

Sarah - not sure if it is better but I take "eskimo" fish oil (as I heard that brand was supposed to be the purest) but I am sure the Zita Wests are probably good too. I used to take the exkimo capsules (9 a day) but discovered that the eskimo oil itself tastes fine (not fishy but like a lemony olive oil) so I just need to take the equivalent which is only 1 teaspoon. I prefer this to swallowing loads of capsules. 

Pinpin: Fantastic news on your TNFa test result. We all know this is not always the easiest test to improve on   

Nice to have you back Cath!! Just missed you at Dr Gorgy's as I was there yesterday. There were only people there I had not met before. But there was someone showing off her beautiful boy/girl twins to Dr Gorgy and the other girl I met there had just got her results back while I was there - a BFP - so she joined me in the IVIg room. So that was nice. 

siheilwli - how are you feeling now after your first jab? 

Ells - I am glad everthing went OK with Dr G. 

Kazzie - did you retest? Is it a natural cycle you are on. Hoping you have some good news!

Welcome Chaz - I replied to you on the other thread. 

Well my levels are almost back down to normal - my 50:1 is fine - it is just my CD56 which is a bit raised. Really hoping my next test will be clear. 

Hi also to Cozy, Jax, Angels, Lalaby and Donkey.

Omni xx


----------



## Cath34

Omni- great news that your 50:1 are down to normal range, thats awesome. Can i ask what were your levels before you started immunes? My 50:1 was 34%
My scan went well today, lining is 8.5mm and triple lined and I have 12 days to go until ET so I'm hoping for some more growth although Dr G did say that it will condense down once I start the Gestone and Cyclogest next week!!


----------



## Toffee Girl

Omni - thank you so much for your reply.  

I must admit, that I am secretly hoping something will gradually be working some magic in my system.  I know he also says that those with immunue issues and secondary infertility are the hardest cases to treat.  At least I have got rid of 18 rubbishy eggs, so hopefully there will be some better ones lurking underneath.  Dr Gorgy has said to rest for two months, and it may end up being three depending on dates etc, so we will have another go in November.  I am waiting for LAD and TNF levels to come back and am really curious to see if these are any better after our trip to Dr Armstrong.  I also presented Dr Gorgy with a list as long as your arm of tests I have not done (most of which he said were covered by Clexane and IVIg - but I don't like the idea of not knowing everything!) and he is going away to review them and come back to me.  I haven't yet told him the tweaks I want to make to the next cycle, but there's plenty of time.

Hope you are keeping well and getting fat !! 

Much love

Toffee


----------



## Cath34

Hi Toffee, sounds like you have a plan, well done. I have to hand it to you, you are very positive in your outlook of all of this, fair play to you. It makes alot of sense what you say about getting rid of the old eggs and hopefully new ones will come through which are better. I have everything crossed for you hun.   xx


----------



## omni

I agree with Cath, you have got a very positive attitude Toffee. I am sure it will help you to perservere through all the rubbish us immunies have to go through.

Not fat yet   If it wasn't for all the scans I wouldn't believe anything was happening. 

Cath: this is how my 50:1 has been behaving:

Pre-cycle: 33
4  weeks: 26
6  weeks: 30
8  weeks: 18.6
10 weeks: 13.5
13 weeks: 10

Glad everthing is going well with lining! Its always good to have one less thing to worry about.

Omni xx


----------



## Cath34

Thanks Omni, I didn't realise your level was practically as high as mine before ivig. I'm glad its looking really good now though. Theres hope for me yet!


----------



## Angels4Me

Sarah:  my fertility shake consists of the followig:

1 x organic egg yolk
organic bio yoghurt
spiralina
blitzed brazil nuts, walnuts, pumpkin seeds and linseeds
turmeric - alternative way to get tnf alpha down - dont know i this has worked tho
fruit

High dose fish oil are supposed to get tnf alpha down too. I take these with meal but dont think i currently take enough.  have used zita west vital dha but now use eskimo 

angels


----------



## sarahh

Hi all, 

Omni - thanks for that, I will get myself some Eskimo Oil too.  Where do you get yours from?   That quote you posted - is that 17 wks after the first lot of IVIG?  Is that how you take it?  I wish I could try naturally but since DH sperm is 99% abnormal with a low count and poor motility that doesn't leave us much to play with eh?     I'm glad your levels are doing ok.  Guess you are hoping you can stop the IVIG soon!  You still on steroids? 

Cath - sorry didn't reply to you sooner my computer been sick & had to go off to the computer Dr !  On DH's now!  Glad your scan went well and your lining is improving.  

Sorry for TMI here but I wondered if anyone had any comments re: my post failed cycle bleed - I started 4 days after stopping the Clexane / Gestone, was heavy for 1 1/2 days roughly but has already stopped so in total lasted 3 days which is less than a normal period.  I guess I was kind of expecting a heavy one with all the progesterone etc.  My bleed was also really "clotty".  Sorry, I know this is gross, but hey, we've all been through it!!   I will mention it to Dr G cos it seems weird to me.  

Ells - No I didn't sit down at all on Tues, walked in, got my blood form and Dr G happened to be in reception so he asked me to confirm what bloods I wanted, then I left to go to the blood clinic.  Perhaps you were still in there as I'm sure I was there literally just after 11am.  

Sprinkles - glad Greece went ok. Its a bizarre experience isn't it?!  And yes, quite painful.  Glad you found the receptionists friendly - you obviously hit a good day  

I'm off to Centre Parcs next week with my mum and DD for a bit of a break.  My mum offered so I couldn't refuse    Think a break will do me good although I'm not feeling too bad after the old BFN.   I'm just sh*ting it cos next time will be our last go due to finances.   I wish I could keep going as I'm sure it would happen at some point......... 

Toffee Girl, I'm also waiting for my test results altho I might not phone next wk while I'm away for them so I can really try to forget about it all for a bit.   I'm dreading finding out what my TNF are doing.  

Right, I have a huge pile of ironing, so off for more fun fun fun..... 

Sarah x


----------



## Maarias

Hello,

In case I forgot to say, Sarah really sorry to hear about bfn. Enjoy Center Parcs!

Omni - the lady with the twins you mentioned at Dr. G's office is one of his 'miracles' -did 5 icsi's elsewhere before going to Dr. G and getting pregnant on her first go! 

A quick question for all the pregnant immunies:
Wondered how often you were having ivig and/or intralipid and how often you were testing? For the moment I am just alternating between one or the other every fortnight until I get to 24wks, without bothering to retest. I am now 20wks or thereabouts (dates keep changing!)

Also, anyone heard from Beattie2 - has she had her baby yet

Mariax


----------



## Cath34

My God its very very quiet on here lately ladies, where is everyone


----------



## Toffee Girl

Hiya All!

Thanks for all your comments on my PMA - hope it doesn't drive everyone nuts.  Don't know why I am not down in the dumps.  I guess I am happier since I got to grips with the whole immune thing as at least I now know what is wrong and am therefore in control of things.  Also, the bit I really hate (like everyone) is the 2WW.  I find it really messes with your head by the end of the two weeks, so I am very much relieved not to be in that limbo anymore.

Just a small question - does anyone else who has had LIT also suffer with allergies to animals or hayfever at all?  My allergic response is really cranked up at the moment (can't go down to pet my horse without getting really itchy eyes and coming out in blotches on my face if I touch her) and I am convinced it is something to do with the LIT. Over the last few years, my allergies and asthma had almost disappeared with this immune problem, which I had thought was strange and now they are back with a vengence.  Am hoping this is a sign that the LIT is now starting to do its job.  Can't wait to see what all the levels are and see if I am right.

Much love to everyone - Sarah, hope you are ok too?

Toffee Girl


----------



## Maarias

Toffee girl,
I came out in rashes all over the place after doing LIT with PA. He said that this was a good sign as it meant that I was building up immunity....

I have to say after having ds my allergies completely dissappeared, I now think this was my immune system gone into overdrive after that pregnancy and was busy trying to stop me getting pregnant again!

What's confsuing is that everytime I've been pregnant my allergies have flared up again - tbh I'm not sure what it all means myslf, as I've also read that getting rashes can be an immunes flare up!  

Mx


----------



## lalaby123

Hi girls

sorry for long absence. Back from hols and catching up on this thread. 
Hope everyone is well.

Any news from Choice? i hope she is doing well with her pregnancy

I have just received the results for my endo biopsy and have no idea what it means and Dr G is away. If anyone can shine some light I would be most grateful:

LMP - not stated
        endocervical cells present (he has put a tick next to this)

Patient Report - negative. No dyskaryotic cells seen
Recommendations - Normal recall

any idea?

Lincs - I had biopsy with Dr G, it was a rather unpleasant experience but I have forgotten about it already so don't worry too much and just grin and bear it on the day

Toffeegirl & Cathdio hope you are both doing ok 

Hi to everyone else
xxx
Leila


----------



## lalaby123

me again.....just realised those results i posted maybe just for a smear test as I had that done at the same time. Carissa didn't know what to look for and this is all she has sent me....if anyone has had theirs done with Dr G please let me know what measure I need to look out for

thanks


----------



## Cath34

Lalaby- I had the same test done but never got a copy of the results, he just told me that there were no CD57 cells present. I would say those results you posted were for the smear but I dont know. Anything with a tick is classed as ok with Dr G. If its not good he highlights the results with a colour.


----------



## lalaby123

thanks Cath - i guess i have to wait till he comes back - it will be over 3 weeks since i had it done so i am rather impatient to know if those damn CD57 cells are present or not   I hope not to avoid Humira.....xxx


----------



## Sprinkles

Hey ladies

Sorry cant help on the endo biopsy results, not had that done, but very interesting what you said Toffee Girl about allergies and stuff.  I normally have terrible hayfever and allergic to cats, but over the last 3 years have become accepting of my furbabies without any symptoms and hayfever this year has been non existant, so guess this is due to overactive immunes, so maybe I should watch for sneezing fits to see if the LIT has worked?  Will the humira lower my tolerance to hayfever/puddies as well?  Interesting isnt it that one thing we're grateful of losing is in effect causing all these fertility problems!

Had a mare of a morning, had had my blood drawn last night to send down to TDL for sending off this afternoon to US, and rushed from my drs to post office to make sure I got the before 9am special delivery, and some niggly feeling just told me this morning that it hadnt got there, and guess what at 1pm this afternoon it was still in the delivery office in London!!!!       proper mad!  Anyways thanks to a lovely post office worker and some helpful ladies at TDL it got there just about in time!!!  This is all stressful enough without stupid things like this happening.  Had rung Clarissa to see if I would have to pay for another test if it didnt get there in time and she was really helpful, asking if there was anything she could do.

Anyways calmed down now, just, and filling in my claim for my money back on royal mail


----------



## Rachel36

Hi girls,
I'm a newbie on this thread but went to see Dr G for a consult in July as I am hoping to be under his care on a shared care basis when I have my next donor egg cycle in November this year.  I was previously at the ARGC but I have asked him to retest my immunes near to the cycle to see if I will be a good candidate for intralipids - according to Dr G I found out my previous retests showed I don't respond well to IVIG that they had given me.

Lalaby - I've just read that you said Dr G is away - do you know when he gets back?  Dr G also recommended karyotyping for my DH which our GP has done and I wanted to check if the results are in yet.

Sprinkles -   I found out to my cost on a previous cycle that the Royal mail special delivery service is by no means 'guaranteed'   as some drugs I had ordered got sent to the wrong depot - I got the cost of the delivery back but unfortunately not the expense I had having to pay the ARGC prices for replacement drugs!  

Thanks,

Rachel x


----------



## Cath34

Sprinkles Dr G is back in work on Monday.


----------



## lucky2008

Hi Girls.

I wonder if you can help me. I went to see dr gorgy in august and have just had my results sent to me. As i don`t live near London, i decided to try and interpret my results myself. I am hoping you ladies can help me. Please can you also advise what immune treatment is needed based on my results.

My test results were as follows:

NK Assay ( % killed panel )

Name                    Result

50:1                    21.3
25:1                    14.2
12.5.1                  9.2

IgG cone 12.5 50:1      24.7
IgG cone 12.5 25:1      15.2
IgG cone 6.25 50:1      15.2
IgG cone 6.25 25:1      16.1  

%CD3                    85.5
%CD19                    7.3
%CD56                    2.5
%CD19+cells,CD5+        37.0

NK assay w/Intralipid

Name                                Result

50:1 W/Intralipid 1.5 mg/ml        16.9 
25:1 W/Intralipid 1.5 mg/ml        14.1

TNF-a:IL-10 (CD3+CD4) 22.9
TNF-a:IL-10 (CD3+CD4) 11.7

Lekocyte Antibody Detection was negative on the whole but read as 1.0, 1.0 (highlighted), 32.0 and then 9.2 (highlighted). I take it the highlightes mean something?
DQ Alpha Genotypes for dh was 0102, 0501 and mine was 0303, 0501 so we both share the 0501, i take it this is bad?

I was positive (Heterozygote) for the MTHFR C677T Mutation but negative for Factor 11 Mutation-Prothrombin factor 11 G20210A mutation and Factor V (Leiden) Factor V G1691A Mutation.


----------



## lalaby123

Hi Lucky

I am no expert in this as am fairly new myself but until you hear from others I thought I give you my  2 cents:

your NK activity and some cell counts are higher than should be, it seems Intralipid seem to work better for you so you may be given a combination of IVIG and intralipid as the test is not 100% accurate and IVIG is supposed to work better

your negative LAD means you need LIT and possibly donor LIT due to partial DQ match (not 100% sure on this)

Your positive MTHFR means you need to take high dose Folate

You will probably also be prescribed, baby aspirin, prednisone, and other drugs depending on your circumstances. 

I am myself waiting to find out my course of treatment but from what i have read here these are the standard treatments  if you have  immune issues. 

All the best
L


----------



## Trueblood

Choice

As I have issues with my lining exceeding 7mm any suggestions on what you did differently to get it to 20mm.

Mr Gorgy has already tried (Viagra, estraderm, asprin, progynova)

Thanks


----------



## Cath34

Hi Lucky, lalaby has covered it all really. 
I have pretty much the same as you, although my NKS were 34%
I am homozygous + which is worse again and am on 60mg cleaxane you may only need 40mg being hetro?

I also had neg LAD and had partial match with dh like you. I went to greece for donor LIT which I have to say raised my levels from 26 to 87.5 which is great. Although you can use dh blood for lit with a partial match I believe.

Its good that you respond to Intralipids as I respond to IVIG and its much cheaper than ivig.

Best of luck xx


----------



## Maarias

Trueblood,
have you tried acupuncture.
Your linng only needs to be around 8-10mm so you're not that far off.
Anything that boosts circulation (e.g. exercise) is good.

Anyone ever found they had a reaction to intralipids. I am finding I am sneezing more since drip last week. Am due for ivig next week, but paranoid I am having an immune reaction...

Mx


----------



## omni

Hi Lucky,

Yes Lalaby and Cath have covered all the issues. Lucky your TNFa is below 30 - so you won't need humira - YAY!

Unfortunately a match on 501 is not good (501 is treated like a cancer by your immune system). You would probably therefore be best with donor LIT. Your baby will get one number from you and one from your DH so you have a 25% chance per embryo of 303 : 102 (no problem); a 50% chance of 501 and another number; and 25% chance 501 : 501 (the most problematic combination) - But even then people exist with a double 501s so if you get your blocking antibodies up (e.g., by doing LIT) you should be putting yourself in the best position. 

Sarah, I weaned myself off steroids at 12 weeks. I get my eskimo oil from discountvitaminsandherbs but if you do a google on "eskimo fish oil" there are may places to choose from and I am not sure if discountvitaminsandherbs is still the cheapest. Yes, it is not clear from when the 17 weeks begins to run. Like you say, it would seem to be from when tretment first commences.

Toffee, sorry I am not sure about allergies/rashes. All I can say as it does seem to be related in some way to the immune system as I have seen loads of posts mentioning it on here and other bulletin boards in connection with immune tx.

Omni xx


----------



## lalaby123

Toffee/Omni
I am not sure if its relevant, but when I got pregnant and then miscarried from day 22 till i miscarried day 43 I developed a rash on my chin which I had never had before and never had again since. I am guessing it was to do with my immune rejecting the embryo.....


----------



## lalaby123

question ladies
I have a suspicion that I have been briefly pregnant a few times but then it all disappeared and got period
Does anyone know if my positive LAD and very high levels (in the 90s%) confirm this? I know it confirms that i have been pregnant (but miscarried) but i wondered if the very high levels mean that I have been pregnant a few times


----------



## Trueblood

Hi Maarias,

I've been doing acupuncture every week for over a year - ironically under her advice I stopped riding my horse as she felt it was aggravating my endo. I've just started riding again as I miss him and need the exercise.


----------



## Maarias

Trueblood,
I don't know how often Choice is posting at the moment, but try doing a search on here, we did have a thread a while ago on boosting lining...I'm sure there will loads of useful tips on there... 
Also, the Zita west books suggests loads of useful dieatary things you can do, so try and grap a copy of her book.
Mx


----------



## Cath34

Choice hasn't posted on here for some time after a heated discussion with another member! I'm not sure she will either. Maybe you could pm her.


----------



## omni

Hi Trueblood,

How do you take the progynova? I have never really had a problem with my lining but I have heard of girls inserting them vaginally instead of taking them orally and getting significantly better results. 

Sorry Lalaby - I don't know the answer to your LAD question - maybe you never had a problem in that regard in the first place and a problem never developed. You are lucky not having this problem as so many immunies seem to have it. 

Omni xx


----------



## blueytoo

Hi everyone

I'm planning on seeing Dr Gorgy some time in November prior to my next tx in January. I've had NKC and NKC assay done but IViG only brings my NKC down to 18 which is not good. 

I am planning on having Dr Gorgy run every single immune test on me (no partner as I'm single so donor sperm) and wondered whether someone that had been to see him recently and had their bill to hand would be willing to either post here with the individual costs of each test or pm me? I found some vague costs in other posts (by Omni or Choice I think) but I need to nail down specifics financially. 

I did ring the clinic but Clarissa told me there is no price list for the immunes. 

Thanks

Claire xx


----------



## Maarias

Hi Omni
Wondered how often you were having ivig during pregnancy?

Trueblood - have you had Dr. G look at your lining - I was on estraderm patches every other day and progynova four times a day at one point...also viagra every six hours I think it as but please check with him - he's quite agressive and affective in his linig tx.

Mx
#


----------



## Cath34

I am also on x2 progonova and I'm cheating and inserting another one vaginally!! I'm also on the patches every other day and viagra every 6 hrs. Idont know what my lining is yet until he comes back from his hols!!   its going to be good.


----------



## lalaby123

Cath and Trueblood how do you know your lining is thin i think mine may be too as my periods end very quickly.... 

feistyblue, i will try to find my bill and list the prices for you.....


----------



## Cath34

Mine isn't thin exactly but when I have had a scan its been between 7.5 - 8.5 before ET and I really would like to see it more but Dr G said 8 is fine. I'm convinced that  a little thicker may well help with implantation but thats just my opinion. If its too thin dont worry he will tell you and prescribe accordingly.


----------



## Toffee Girl

Hello Everyone

Wow - lots going on on this thread after a quiet few days.  I am excited to say that my hunch that reduction in allergies was related to these immune issues was correct.  My massive increase in allergic reactions (to my horse and stables particularly) over last 3-4 weeks ties in nicely with the fact that after my 3rd LIT on August 14th (with Paul Armstrong), my LAD levels have gone up from 3.3 and 8.3 to a whopping 99.3% and 97.3% (for the key measures T-cell IgG and B-cell IgG).  Am over the moon.  

However, my NK cell level is still 18% (at 50:1) and my TNF-a is still 51 which is pants.  Interesting that having had humira in April and May, then IVIg and intrallipids in June, July and August has not brought the TNF-a down significantly, and in fact my NK cell level has gone up from 15 back in March.  Anyone know of any other approaches to lowering TNF-a in these circumstances?  Has anyone had more than the standard two months of Humira?

Also, has anyone any ideas what a raised CD4 (T helper cell) means?  Also, I had my NK cell assay with intrallipids and the results of this were 11% (at 50:1) and 7.9% (at 25:1).  Is this good or bad?

All thoughts welcome - and Choice, if you are still reading, please come back and start posting again  

Toffee Girl


----------



## Toffee Girl

Me Again

My previous page would not let me write anymore for some reason!

Trueblood and Cath - with your lining, have you also tried inserting your viagra vaginally (sorry to be so personal!)?  Each cycle where I have done this, I have had much better results for my lining.

Lalaby - My endoscopy results sheet from the Beer centre was as follows:

SPECIMEN:  Endometrial biopsy with CD57+ cell assessment
CLINICAL HISTORY: LMP not provided

FINAL PATHOLOGIC DIAGNOSIS
Endometrial biopsy showing:
1. Late secretory endometrium POD 10-11
2. 0-1 CD57+ cells identified/high power field
3. No evidence of inflammatory change seen
4. No evidence of necrosis
5. No evdience of hyperplasia

COMMENT 0-1 CD57+ cells identified consistent with no increase in CD57+ cells

Hope all of you are well. Thanks for all the input on the allergies - sounds like there is definitely a relationship between the two.  Maarias - perhaps your sneezing after intrallipids is a good sign?  Cath - when is your ET likely to be?  You feeling OK?  Omni - hope you are feeling ok?  Sarah  - hoping your trip away was nice?

Got to go as this screen won't let me see what I am writing  - argghhhh

Love to all

Toffee G


----------



## Maarias

Toffee - I really hope the sneezing is a good sign ,but am very nervous - have booked myself in for ivig with Dr. G on Monday. Will make sure to go prepared this time with ugg boots and blanket (I always get really shivery during the first drip!).

Cathe: re. lining: 8-10mm is absolutely fine. All my bfps have been with a lining in this range. 
You can check lining in a natural cycle with an u/s.

Choice - how is pregnancy going - did I hear a rumour it might be twins??   
Mx


----------



## niccad

Hi - can I join you?

I went to see Dr Gorgy a couple of weeks ago & just had the first result faxed through which wasn't good... Waiting for the others but upset with the first ones. I have a follow up with him next Wednesday to go through everything & decide on meds...  My TH1 alpha levels are 38, so from reading 'the book' (I'm sure it's going to become my bible) it seems I'll have to go down the Humira path which I'm a bit scared of. 

Feistyblue - I couldn't really understand Dr Gorgy when I saw him so I asked him to write down the costs (but then I can't really read his writing either). This is what it looks like:

NK cell assay + TH1/TH2 cytokine ratios £650
LAD £200
DDQ alpha £200
Gene mutation for factor ? ?? and MTHFR £240

I hope I haven't done the wrong thing by putting the prices on here...
Hello to everyone
Nic


----------



## sarahh

Hi all, had lovely break at Centre Parcs thanks! 

Toffee - when did you have your repeat bloods done?  Asked Carissa to fax results to me today and they haven't arrived?  Think you went on the Monday after test day??  I went Tuesday so my results should be back.  

I have ordered some stuff that is meant to help with TNF alpha - all "natural" health remedies but I'll have to PM you the names over nxt few days as I'm not at home at the moment and all details are at home.  Are you taking Fish Oil?  

Choice - any news on your scan hon??  PPPPPPPPPPPPPPLLLLLLLLLLLLLLEEEEEEEEEEEEAAAAAAAASSSSSSSEEEEEEEEEEEEE    come back and post on here, we miss you   

Omni - thanks for details of Eskimo Oil - what is the actual dose of the oil (think they usually give break down of DHA and EPA?) 

Niccad - I'm there to see Dr G this Weds too, what time is your appt? 

Cath -  that your lining is improving - you took Choice's advice with the old Progynova then?    Are you going on Mon for a scan?  

Catch up with everyone else soon.  V tired after v long journey home - accident on motorway! 

Sarah x


----------



## Toffee Girl

Hi Sarah

Glad you had a good break - you sound very perky.  Yes I did my tests on the Monday, not sure when they actually came back but I called for them on Thursday, so yours should be back by now.

And yes, please, can I have all the herbal supplement details on the TNF-a thing - where did you get the info from about them in the first place?  I have to do something to try and get the TNF-a down.    Can't help wondering if anyone anywhere in the world has had better results with taking humira for longer.

Love to all

Toffee Girl x


----------



## Sprinkles

Hi girlies

Toffee great news on your levels going up thats fab.  Sorry cant help on the humira only had 2 myself so far but I'm sure I've read on here about other ladies having more than 4.  If your screen is playing up when you're typing it could be the compatibility view.  At the top of your screen near the web address bit there is a button that looks like a piece of paper which is ripped across the middle (sorry that the best way i can describe it)  If you click on that it should sort out the problem.  Hope that helps.

Sarahh glad you had a good break, I'm taking Eskimo oil as well, I have 3 in a morning and 3 at night but think you can have 9 altogether, 3 x 3 times a day.

On the lining discussion I've never got over 7.4mm despite being on double HRT last time so wonder now if thats got something to do with it as well.  Are there any natural things we can do to improve, I know about brazil nuts and Choice (yes please come back we miss you) said she had a wheat free diet so think that may be an option as well next time to see if that helps.

Hope everyone's ok and having a good weekend.


----------



## lalaby123

Toffeegirl - thank you for info on endo biopsy much appreciated

Sarahh- please share with all your natural cures for lowering TNF-a i am very curious

hope everyone is having a good weekend, i haven't been able to get the results for my endo biopsy, its either not back (over 3 weeks) or its been lost in transit :-( i hope its not the latter as i can't face repeating the biopsy. Hoping Dr G can shed some light on it on Monday. Also starting a new cycle that day so hoping he will start me on immune treatment on a natural cycle before my first NHS cycle possible next month.....

love to all
L


----------



## Newday

I thought you ladies mightlike to know that I saw Dr G in July TNF level 58.9 and he said 4x hunira which i didn't like the sound of. After investigatin I decided to have intralipids to see what happened.

I sent my bloods off myself on Tuesday and today I got my results my levels are down to 31.5 with NO humira.

I am going to have one more intralipid and then FET

Dawn


----------



## lalaby123

Dawn that is great news for you and everyone else unsure about doing Humira such as myself....going by that i will first give intralipid, then IVIG and lastly Humira a go.....well done you and your TNF-alphas


----------



## sarahh

Hi all, just a quick one from me tonight as I have a huge pile of washing and ironing to do after the hols   

Anyway, phoned Carissa yesterday and today to try to get my blood results. She faxed some today but not all! 

Rather curiously, one of my LAD levels has gone up to 51 (the B level I think) but the T level has gone down from 41 to 15 ??!!!!      Which one is the most important ladies, I can't remember? 

On a slightly more positive note my TNF-a has gone down from 54 to 38 (as you all probably remember I can't take Humira so that is with no Humira).  

I haven't received any of my others yet although I'm sure the LAD is the one that takes the longest so they must be back, or lost. 

The supplements are from Choice so most probably know them anyway!  I will post them tomorrow when I have all the details to hand.  

Hope you all having a good weekend. x


----------



## lalaby123

Great news about your TNF Sarah sorry can't help with LAD
I hope the one that's up is the important one xx


----------



## omni

Great news on test results all round.

Sarah, it the B-cells   YAY!

Dawn, so happy for you.   Your TNFa level is so close to the 30 limit! Wasn't in the high 50s before? You told me that another girl also had TNFa reduction after intralipids.

If people have time before their cycle, it may be worth having a go with intralipids and retesting before starting to see if it lowers your TNFa. It may work for some but not for others. I know that you said Dawn that the test showed that intralipids lowered your NK cells - whether a good result as to the NK-intralipid test is also an indication that intralipids might also lower TNFa no-one seems to know yet. If anyone else tries it please let us know.

Omni xx


----------



## blueytoo

lalaby123 said:


> Cath and Trueblood how do you know your lining is thin i think mine may be too as my periods end very quickly....
> 
> feistyblue, i will try to find my bill and list the prices for you.....


Thank you, that would be great.

Claire xx


----------



## blueytoo

niccad said:


> Feistyblue - I couldn't really understand Dr Gorgy when I saw him so I asked him to write down the costs (but then I can't really read his writing either). This is what it looks like:
> 
> NK cell assay + TH1/TH2 cytokine ratios £650
> LAD £200
> DDQ alpha £200
> Gene mutation for factor ? ?? and MTHFR £240
> 
> I hope I haven't done the wrong thing by putting the prices on here...
> Hello to everyone
> Nic


Thanks Nic, that is really helpful.

Claire xx


----------



## lalaby123

Feisty i can only add that MHTFR on its own is £120, you can do factor V leiden through your GP
all other prices quoted before correct ie NK and Cytokines tests £650, LAD £200, i didn't do DQ Alpha as not necessary unless your LAD comes back negative but mine was positive so saved a bit there....


----------



## Newday

yes Omni it was 58.9 before and now 31.5

dawn


----------



## Cath34

Hi everyone, sorry Ive been away for a few days but I can see that the tests results are all coming back really good at the moment, YAY!!! 
Toffee - those numbers are amazing!!!!

Sarah - the B cells are the ones and your level is over 50 so that is good. 

Well I really hope my lining has improved by the time I have my scan tues. I know it was 8.5 but it condenses down with progesterone so I really hope it doesnt drop!! Scary!! 

So is anyone cycling with Dr G at the moment? Sorry if Ive missed anyone, my head is away with the fairies!!!

Choice hunni - please come back, we miss you.


----------



## lalaby123

Cath - fingers crossed for your lining....
Toffeegirl- good news that its your B cells that are sorted out 

question for those in the know, i want to start immune treatment this cycle for my thyroid antibodies and elevated NK activity, i am guessing i will have to take prednisone, aspirin, Intralipid/IVIG, anything else and when in the cycle do I have to start taking these? my period is due tomorrow i want to make sure i have enough time to get all the drugs etc so your advice wud be most appreciated....

hi to all else, hope everyone had a good weekend
xx


----------



## Cath34

Hi lalaby, I asked Dr G about the anti thyroid antibody test and he said that the treatment I am having already is what they treat give. So I believe IVIG/Intralipids for sure, prednisolone cycle day 5/6 I believe (25mg) asprin continuously, clexane (cant remember when I started this, I think its standard) gestone and cyclogest after EC. H did say that treatment  needed for this is just more vigorous.


----------



## lalaby123

thanks Cath, how early do you have intralipid/IVIG. I want to try intralipid this cycle as i am trying naturally and save IVIG for next month when i may be having IVF. Taking aspirin already so i have to stock up on predisone and clexane. What is Clexane for and is it a daily injection??


----------



## Kiwi_in_uk

Hi all

I've been reading through these boards and it sounds all rather costly.  I really hope things work out for you girls and you get a baby in your arms!!

I have had some tests done with Mr G, but I'm hesitant about going forward because of the financial implications and potential risks to fetus (and me) of putting all these chemicals in my system.  I have no idea whether the research claims that there are risks, just going to by logic.  So, I wondered if anyone would mind helping me out with these questions:
- What is the total cost (including the tests) for a cycle?
- Has anyone visited Mr G and been told they need nothing apart from good old fashioned nature?  Seems you all need Clexane, Asprin, Prednislone, and either Intralipids or IVIG.
- What are his success rates for Live Births?

I guess I'm trying to figure out how much to fight nature.

Thanks
Kiwi


----------



## Cath34

lalaby - Dr G gives IVIG/Intralipid just before EC /ovulation and again if he thinks you need it before ET or same day. Clex is given with asprin to thin blood to uterus and doses range from 20mg -60mg generally. I am on 60mg 30mg x2 day am and pm as I am MTHFR Homozygous positive (blood clotting problem)!!!


----------



## lalaby123

Hi kiwi immunes tests and treatment r expensive but cheaper than two or more failed rounds of ivf
I think most people who go to see dr g need some immune treatment bcos they r the difficult cases either recurrent miscarriage or unexplained 
in your case it really depends on your age if you have time on your hands then give nature more chance but if like me you hear the ticking bomb then it's worth checking as much out before you do an ivf 
cost wise ivf is under 3000 
immune tests around 1200 but parts will have to be repeated 
intralipid 300 vs ivig 1250 and again depending on your case may have to be repeated two or more times 
do u have medical insurance?


----------



## lalaby123

Cath thanku for the info xxx


----------



## omni

Cath: Good luck for your scan tomorrow! 

Choice: we are missing you on these boards!  

Omni xx


----------



## lalaby123

Hi everyone, firstly to let you know Choice and bump are doing well and she is having a singleton.

Secondly i have finally had the results of my biopsy faxed over as follows:

1. Late secretory endometrium POD 11-12
2. Rare CD57+ cells identified/high power field
3. 0-2 FoxP3+ cells identified/high power field
4. no evidence of inflammatory change seen
5. no evidence of necrosis
6. no evidence of hyperplasia or atypia

Comment: Rare CD57_cells/hpf (20x) are identified consistnet with no increase in CD57 cells. However, only 1 FoxP3+ cells/five hpf (20x) are identified suggesting a deficiency. Positive and negative control sections have been evaluated demonstrating appropriate tissue reactivity with the CD57 monoclonal antibody.

From the above I am guessing my CD57 is ok so no need for Humira but does anyone know about the FoxP3 and what does deficiency mean this one is new to me....

thanks
L


----------



## Maarias

Kiwi - good point, re. your questions. I don't have the answer, but do often wonder whether I need to stop fighting nature...I am pregnant at the moment,  but very scared...the funny thing is my ds was made without any immune tx...

BTW, clexane question:
does anyone actually know why we need to be on it...I asked Dr. G once and he just said it's for NK cells...hmmm, still don't understand! 
the Lister told me I could stop at 18-20wks, but Dr. G thinks I should stay on it until 34wks or sth...I am away form home tonight and have run out so not taking it until the morning...I've had a few times earlier when  I stopped for a week or so as was having bleeding.
What is it for?! 

Mx


----------



## Kiwi_in_uk

Hi Lalaby123.  Thanks for the information about the cost - at 2 or 3 times a normal IVF that could be £12k-£18k for an immunes IVF.  Gosh, thats quite off putting for me since even after that you are still relying on non-chromo issues, which at my age (late 30s) is probably where things would come unstuck.  I wonder how much of the tx with immunes just delays the inevitable. Or perhaps I'm just being cynical.  I presume tons of women on immunes tx go on to have healthy happy babies?  I do have medical insurance - but they won't cover me for the tests because I have not been with them for 2 years.  :-(  Have you manged to get some of your costs paid by your insurance company?  

Maarias.  My understanding with Clexane is that it is a blood thinner to help reduce the amount of clotting for things like lupus, not sure about the NK cells thing.  I have been told to stay on that one for 12 weeks, 24 weeks and 34 weeks.  I wish these doctors would agree.  How far along are you?  At the end  of the day hemophiliacs (people with no blood clotting ability) are usually men so women must have to have some ability to clot. Don't worry if you miss one lot - I'm sure it stays in your system over a period of them and has a half life!

Kiwi


----------



## lalaby123

Kiwi sorry i think you misunderstood me, i didn't say it costs 2/3 times a normal IVF. The other girls here will be able to help you better as they have had full cycles with treatment and I am a starter. I would say immunes can add around £1200-£6000  to the cost of your IVF cycle depending on the severity of your immune issues and the number of times you need intralipid/IVIG/repeat blood tests. Bear in mind that if you have strong immune issues then you probably won't get pregnant with IVF anyway so you would be throwing money away without immune treatment and might as well address the issues while having IVF.....that's my logic anyway....
I personally am convinced my NK activity is what has kept me from getting pregnant as there is nothing else wrong with me or my partner. I think having IVF without treatment for my NKs won't address my issues as it does not help with implantation which is where I think my problems lie. You know your body and your case best and with all the info here can make the best judgement call as to the best route for you. Good luck xxx


----------



## Bibie

Hi girls,
I don't write often here, because I speak french and you speek too quicly for me ;-)
However, I wish you good luck with your immune treatement!
I've done my firts immune treatement this cycle here in Belgium, prescribed by Dr Gorgy.
It was my 5th IVF... but we did an IUI instead on sunday, because of poor response, I had only 4 eggs...
So i'm a bit dissapointed, and I will try to keep a little hope...
I have done a first LIT injection ( 1 intraveinous + 1 under the skin) on 4th september, just before my stim.
My hematologist tested it last week and I had always negative LAT... So she make a second dose of LIT yesterday...
Do you know if it happens often that it doesn't work the first time? And do you know if sometimes it doesn't work at all even with a second dose?
I hope it wasn't too late to do it yesterday, 1 day after mu IUI... I need really hope girls....
I had Ivig, prednisolone, aspirin, heparin, LIT and Humira...
I don't know what I can do more to have just 1 time a BFP after a so long journey....


----------



## Jazz1975

Hi Ladies,

I wonder if I could please join you on this thread..    I saw Dr G a couple of weeks ago and have had my results faxed over to me today.  I can't make head nor tail of them I'm afraid .  I have posted them on the immunology board, but I wondered if it was perhaps better to ask on here, I hope no-one minds me cross posting.  Can anyone please help me interpret these results:

NK Assay (% Killed) Panel

50:1                                               22.7             Limits 10 - 40
25:1                                               12.8             Limits 5 -30
12.5:1                                             8.6              Limits 3-20
IgG conc 12.5 50:1**                        14.1
IgC conc 12.5 25:1**                        13.4
IcG conc 6.25 50:1**                        19.2
IgC conc 6.25 25:1**                        12.7
%CD3                                            *89.4            Limits 60-85
%CD19                                             5.9             Limits 2-12
%CD56                                             4.3             Limits 2-12
% of CD19+Cells, CD5+                      *32.2           Limits 5-10

NK Assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml                   14.5
25:1 w/Intralipid 1.5mg/ml                    7.8

Leucocyte Antibody Detection

Flowcytometry                                  NEGATIVE
(T-Cells) IgM+                                   2.2
(T-Cells) IgG+                                   1.9
(B-Cells) IgM+                                   7.0
(B-Cells) IgG+                                   10.6

TH1:TH2 Intracellular cytokine ratio

TNF-a:IL-10  (CD3+CD4+)                  *44.8   (Limits 13.2-30.6)
LFN-g:IL-10  (CD3+CD4+)                  *29.8   (Limits 5.8 - 20.5)

Thanks so much for any advice you can give me as to what these results mean.  I hope you're all well, and I look forward to chatting with you and hearing your stories.

Rach.x


----------



## lalaby123

Hi Jazz

I am not a long time immuney but i thought I put you out of your mysery as I know what its like when you get your results and don't know what they mean. 

You pretty much need the full immune wack. 

Your NK activity and some cell counts are high so you need IVIG/ intralipid. Luckily both seem to work for you so he will alternate. 

Your LAD is negative, it should be positive so you need LIT. For this you need to have the DQ-alpha test to see if you need donor LIT or your husbands. 

Your TNF-alpha is high so you need Humira. 

You will also probably need Aspirin, Clexane and Predinisolone on top of the above. 

when are you having a consult with Dr G?? 

all the best
L


----------



## lalaby123

Jazz - just to clarify when I say you 'need' this or that I am just echoeing what Dr G or Dr Beer's protocol will say. You don't ofcourse 'need' anything. It is all a judgement call. 

Bibie- sorry can't help you with LIT but i am sure someone else will come along and advise

Cath - how was your scan? 

As for me ladies I have finally had my phone consultation with Dr G and got my treatment protocol to support my upcoming IVF. 

Luckily my endo biopsy didn't show any CD57 cells however I was deficient in FoxP3 which is a new cell they test for and is needed to protect a pregnancy which I am lacking! treatment for it is same as NK cells. So all in all I need Intralipid/IVIG, aspirin, clexane, prednisolone. I am going to start taking the drugs from day 5 ie this Saturday. Can't wait. Good bye NK cells and evil antibodies. 

its gone very quiet here lately, where IS everybody? hope you are all well and just busy

xxx


----------



## Jazz1975

Hi Lalababy, and thanks so much for your reply, I really appreciate it.  I think DH and I have come way too far down the line now to turn back, and as the test results show that we pretty much require every immune tx known, then we'll certainly try our best to have everything that might improve our chances.  We are lucky enough to still have an NHS go to use, and so at least that's one less cost to worry about (a drop in the ocean at this stage though).  

We have had a DQ Alpha test done, but the results hadn't come back as yet of this morning, so I'm sure we'll hear those in the next few days.    We don't have our next NHS consultation until the 20th October, so I didn't think it was worth going to see Dr Gorgy until after that - as we wouldn't be able to make plans to move forward until then anyway.  I've booked us in for a follow up with Dr Gorgy on the 26th October, and we'll know better where we are financially then too.  DH has been made redundant twice so far this year, and is now working on a temporary contract for approx half his previous salary, so funds are tight I'm afraid.  We'll go to the ends of the earth to sort this out though as the immune issues literally explain everything about our previous experiences with tx.

We won't be txing until next year as by the time I've had the three natural cycles our clinic insist on prior to starting again after your previous failed tx, it'll be December, and we really don't want to tx again around Christmas, so we hope to go again in January, or as soon as we've raised the funds.

I see you're over in Manchester - I'm based just outside Chester, so just a short hop away from you   I really hope everything goes well for your next tx, and I'll look forward to chatting with you.

Thanks again for your reply.

xx


----------



## Kazzie40

Hi Girls, just a quickie to say sorry I disappeared suddenly after saying I had a faint postive, it turned nearly neg the next day but Dr.Gorgy felt it was a proper postive rather then HCG in my system and told me to get a beta, I was working the following two days (Thurs/Fri) so couldn't get to London to get it done but didn't think that would matter as normally my local fertility unit do them so pitched up there on way to work to be done to be told they don't do it anymore, I begged them to ask consultant to do it as a one off because I couldn't get it done elsewhere but they refused. The HPT was was postive again on the Friday and gradually faded to almost neg the following monday, and AF turned up Tues at 21DPO   so probably a chem I think.

Glad to see that a lot of results are coming down or up to the levels required after treatment   Good luck with the next part of your journeys girls.

Cath - best of luck for this cycle to be the one    I will   that it is finally your turn.

I am trying naturally at the moment because I want to give a bit of time to check my levels are what they are meant to be before spending more money on IVF, I am also trying to work out how much a cycle would cost with Dr. Gorgy adding the HFEA fee and Blood test not included in the price quoted on the website. Trying to find out what they are so if anyone can tell me that would be good.

Sarahh, you mentioned you are going to the clinic tomorrow, I am too for a intralipid infusion and a cytokine retest I think it is. My appt is 10.30, what time is yours? and did I see someone else was also going tomorrow?
Hopefully we might see each other then.

Well best sign off for now as this was a quickie before going to bed as have to get up early to get to London.

I'll be back in the next couple of days to catch up with what has been happening for everyone.


Take care love Karen xxx.


----------



## lalaby123

Welcome back Karen and sorry for the chemical  that must have been v stressful good luck with the retests 

Jazz yes your results although not good but atleast they give u an explanation and hopefully a solution so your next attempt will hav more chance of success
one thing though for u to be aware of is that with humira and LIT You need to bring your levels down before having treatment so don't it leave it too late to start your immune treatment and yes you r v lucky atleast u get your ivf free and you have age and so time on your hands I am sure with som help u will get your BFP xxx


----------



## Jazz1975

Hi ladies,

Sorry to hear of your chemical pregnancy Karen.  Sending you  

Lalababy, that's a great point about starting to reduce the levels prior to starting tx - I hadn't thought of that, so thanks very much.  Hope you're ok.

Rach.x


----------



## Toffee Girl

Hi All

Quick question - can anyone please tell me where the best place to buy Wobenzym from is - it is mentioned in earlier posts as being best to get from Amazon health, but all the companies on there seem to be American.

Also, can anyone please tell me if there are any supplements that are also known for reducing TNF-a specifically?

All the best everyone - oh, and I have a 1pm appointment with Dr G tomorrow (Thurs 24th) if anyone will be there around the same time, please say hello.

Sarah - hope you got on well today and please please can you post your list of supplements?
Cath - hope all is going well for you?

Take care

Toffee Girl x


----------



## Cath34

Well I had FET yesterday but only 1 of my blasts survived the thaw which I was absolutely gutted about. Anyway we obviously went ahead, my lining had condensed down to between 8.4mm - 8.7mm and Dr G was happy but I wanted it thicker really!!!
ET was very smooth and flawless he said, I didn't end up having IVIG/IL in the end as we both discussed it and seeing as my levels were down after testing 5 wks ago to 11.4 and I had IVIG 10 days ago we didn't want to spend that kind of £ on just 1 embie, does that sound bad? He said that the last infusion should be working nicely now anyway so I went with it. IL dont work for me as we did toy with having that instead, but in the end I came away having nothing. I did have acupuncture though before and after ET, just across the road and much cheaper than ZW!!!
I'm not holding out any hope whatsoever for this go and I'm already planning to start straight after this next bleed. 

Kazzie- so sorry to hear of your disappointment with your bfp then bfn. Its so cruel isnt it?

Sarah, how did you get on today?


----------



## ells

Hi ladies,

Sorry I have been AWOL for a while but I have been unwell AGAIN   but........ the good news is I now feel a lot better and I think thats because my new steriods have started to kick in   .  Its taken almost 2 weeks for them to start working and I was worried that they wouldnt but they have    I am due to see the specialist again tomorrow for a follow up so we will see if I  will be able to get away with having this op!!!

Hello to all the new ladies, welcome to this wonderful thread.  The ladies on here are fab, they all know sooooo much!

Cath, congrats on being PUPO   , I am sure everything will be fine.  Your levels are all good hun.  Sending you a shower of              .

SarahH, sounds like you had a good break and it came at the right time hun.  How are you, what did Dr G say?

Sprinkles how are you doing?  

TG, Sorry I cant help answer your question but I hope you are okay.  

Lalaby, good news about your NK levels, are you looking forward to the rollercoaster now?

Omni, how are you hun?  Have you started to grow a nice tum?

M how are you? 

Hello to anyone I may have missed off (sorry   )

We will hopefully be getting our result on Friday, I rang and spoke to Carissa on Monday and only 2 lots had come back in so she told me to ring back Friday.  I am kinda excited   dont know if thats the right word but I think you will all know what I mean.  I feel as if we are getting closer and closer to our dream but also that these results will tell me more about whats going on in my bod!  DH and I had our karotyping blood tests done this morning, I am assuming that our GP will get them back early next week?  Hopefully we will be able to get an appointment to see Dr G for our follow up on a Saturday morning, its turning out to be a nightmare getting time off for both me and DH in the week at the moment. Do you think we will be able to?

Hope everyone has a lovely evening, Cath - rest up hun, let that lovely blast bed in for the next 8 and a bit months  - have you named it yet?

Ells 
Choice, if you are reading....     we miss you!!  Hope that you and bubs are doign well!


----------



## Cath34

HI ells, good news, well done. It's always a bonus when you feel up for the journey ahead. By the way I remember when both my DH and I had the karyotype test done it does take a while to come back,  a few weeks I believe. I think its quite a complex test. I just thought I'd give you a heads up on that as we both had ours done separately and they both took a while. Anyway good luck. xx


----------



## Bibie

Hi girls,
Thank you for reading me, and sorry again for my english...  
I wish you all chance with your immune treatement.

I've completed my signature so you can learn a little bit of my long an desesperated journey...  
I really need hope... Now I can't do more that this complete immune treatement. The problem is that here in Belgium, they don't verify that the immune treatement has worked.
My Dr has only verify LAD ( with HLA DQalpha I think?), and it was always negative... I hope that the booster LIT on monday will work quickly?? ( I'v had my IUI on sunday)
Now I've to wait untill the bloodtest on 5th october...

Then if it is negative, we will try egg donation, because here in Belgium, the Doctors don't beleive in immune issues... And as I'm a poor responder ( last time 150 ui Menopur + 300 ui Puregon for only 4 eggs) , they suppose it is the cause only... I don't know what to think about it... We had always very good quality of embies.
So, if it doesn't work this time, we will try naturally untill january, time to take the steps of egg donation... I don't really beleive in my chance to conceive naturaly, but I'll try to keep a little bit hope waiting ED!


----------



## deegirl

Lalaby
Interesting to read of your implantation problems, I have similar problems as you can see from my details.  I will be making an appointment with Dr Gorgy very soon.

Dee


----------



## Cozy

Cath,

 with your FET, I know its disappointing when only 1 survives, but dont forget, it only takes 1. I   this it THE one

Cozy


----------



## lalaby123

Cath, as Cozy says 'all you need is one' like the beatle song but replace it with 'one'  
and hopefully this little one will be THE one.....     for you

Bibie, so sorry to read your history, you have endured a lot, you are very strong and I really hope that the LIT treatments and the IUI will put the end to your failures 

Deegirl, it seems you have already done IVIG/ intralipid etc where did you do these before Dr G? 

Ells, glad you are feeling better and good luck with the test results on Friday. You're lucky your GP did the karyotype test done, mine wouldn't. I wonder how important that one is??

I went to my NHS clinic today and am lucky that they are referring me to a private clinic while they are refurbishing. I am praying it will be Care in Manchester as i have heard very good things about them. Will find out next week and can start my first IVF beginning of next cycle. So i am going to try naturally this month with immune treatment. Not that i think it will work as the chances are slim but still worth a try and at least i can improve things for the time IVF comes. 

hi to cozy, sarah x 2, sprinkles, toffee girl, Jazz, Omni and ofcourse Choice and anyone else i have missed out

xxx
Leila


----------



## ells

Hi ladies

Hope everyone is okay, just a quick post from as I'm at work and up to my eyes   .  Saw the specialist today and I dont have to have the op!!     .  He has diagnosed crones but has said that he couldnt see it in my large bowel so it must be in my small bowel.  He wants me to stay on the drugs I am on and see how i get on with the reduced dose which I start on Saturday, if it flares up I have to increase it again.  I have to let our clinic know about the drugs and if its a problem he is happy for me to change to the immunosuppressants alo something  .  So I am really relieved that I dont have to have the op and I have finally after 17 years got a diagnosis.  

Anyway better go, boss is a yellin   .

Ells


----------



## lalaby123

Ells great news re your diagnosis and that you don't have to have an op   

As for me ladies i am booked in for my first intralipid next Tuesday which i am looking forward to. Any tips for making it easier welcome...

And for the record, i took Dr G's prescription for Clexane and Pred to my gp and without asking them I said that I  needed this prescription converted into an NHS and the lady took it off me and said to go back today to pick it up  i hope once the doctor sees it he won't question it so that will save us some £ specially as trying naturally this cycle so its probably all a waste anyway. 

Can anyone tell me, once i have my first intralipid, will i have to retest my blood and if so when? just so i can prepared the budget

thanks
L


----------



## Sprinkles

Hey girlies

Cath ~ good luck honey have everything crossed for you and as the others have said it only takes one!      

Ells ~ sorry you've not been too well but great news you dont have to have the op.

Hi to newbies and everyone else hope you are all ok.

Got my TNF results back today after two injections of humira my levels have gone down from 52 to 31!!!!  woo hoo am totally made up, apart from the fact we were convinced that I would need four so have bought another two already!  Dependent on whether I cycle in October or November depends on whether I take the other two.  But wont know that until AF arrives which is due beginning of October.

Lalaby you with St Marys then?  Sorry if you've mentioned before.  Thought they would be back up and running by now but seems like they are still sending referrals out to private which means I might have another month delay in between asking for tx at St  Marys and being treated at private clinic.  Did they give you any indication on when they should be back to normal?

Anyway three cheers from me for humira thats the first bit of good news I've had in ages....


----------



## Han72

Hiya

just a quickie to say:

Kazzie -  hi hon, was lovely to see you chez Dr G yesterday! Sorry I didn't see you when I came out of the bloods place and then I had to rush off to meet my cuz for lunch! Did you manage to get out in time   Hope you're ok hon and that the intralipids do the trick 

Toffee - I've heard that fish oils can possibly help to reduce raised TNF-a levels.  I take Zita West's doobydobs (sorry chucked out the box and can't remember what they're called now!  I think it might be Vital DHA or summink like that...  I've also heard that Eskimo fish oil is supposed to be good but I haven't tried it myself.  Also, as I've mentioned previously, a certain clinic (will shall remain nameless on this thread) will prescribe steroids and IVIG for patients (like me!) who are resistant to humira.  All I can tell you is after 1 lot of humira my TNFa shot up, it then came down to it's original (but still high) level after the second lot. I went ahead with FET but had steroids throughout and IVIG the day after tfr and, guess what?!  My cytokines had come down to normal levels the next time they were checked   There's some debate as to whether it was the steroids or the IVIG that made the difference but clearly something did what the humira couldn't!

Sprinkles - great news hon! 

Sorry lalaby, I don't know whether the doc will want to recheck or carry on regardless... 

Salut Bibie - you're good though!  I tried to look at the French infertility websites and could hardly understand anything so good for you posting on here!  I am sorry you have had such a difficult journey   Before you give up on your own eggs, do you think that your doctor could try to change the proportions of puregon to menopur? For example 300 menopur + 150 puregon?  Sometimes we need the extra LH that is in menopur to help us produce more/better quality eggs?  That is what happened in my case, anyway...  Good luck for this IUI honey      when is your test date?

Sorry no more persos, but my pc is playing up!  Either that or something's wrong with the site...?  Anyway, a quick word to all, - not sure if you're aware but when Kazzie and I were in Dr G's waiting room yesterday, Carissa piped up that they (the suppliers or the manufacturers, I don't know which) are raising the price of IVIG by 60%  . She was ringing round for alternative suppliers but she didn't sound too hopeful...    Oh and Carissa goes back to SA next week I believe so we'll have to break in a new secretary now!

Love and luck to all!

xxx


----------



## lalaby123

Sprinkles, i think St Mary's said they are subcontracting until end of year if i am not wrong....So glad your TNF has come down to 31 that is great news. 

Nixf - that is terrible news about price increase of IVIG and another secretary to be trained up..... and i love your hair standing up emoticon hadn't seen that one before  

Cath - hope you are taking things easy 

As for me ladies, my lovely GP had left me the prescription for the Clexane and Prednisolone without questioning so very pleased but now that i have read through the leaflets i am rather daunted by the idea of taking them. Prednisolone alone is supposed to have so many horrible side effect. Tomorrow i am going to GP to be taught how to inject Clexane. Not sure how i am going to deal with it....we shall see. 

hi to everyone else
xxx


----------



## Han72

Hey lalaby, that's great that you got you scrips on the NHS!!!  You will be absolutely fine with the injections lovey, it's easy peasy   Also you can do a scout around on youtube if you like, there's loads of ladies that have posted vids of themselves injecting the various different meds that come with the IVF territory ...

Love to all!

xxx


----------



## lalaby123

thanks Nix, you were right it wasn't too bad though i was hesitant at first to push the needle in but i did it and it was fine phewwwww, great tip about utube i will check it out for the IVF injections so am prepared. 

Has anyone had any bad side effects from Prednisolone? its best not to read the instruction leaflets as they just put you off!!!

love to all
xxx
L


----------



## Han72

lalaby123 said:


> Has anyone had any bad side effects from Prednisolone?


Wot apart from an insatiable appetite and weight gain of about a stone  Nooooo    You'll be fine as long as you take it first thing after brekkie and then stay away from the donuts! (M&S yum yums were my undoing last time around   )


----------



## lalaby123

I hope u r joking!!! I shall stay away from donuts just in case!!


----------



## Han72

lalaby123 said:


> I hope u r joking!!! I shall stay away from donuts just in case!!


erm, no actually  Sorry! I've only just lost most of the extra weight I put on in my FET... and that was back in April...  Mind you this wasn't helped by the fact that I spend the majority of my day sat in front of the pc (on here as currently er.. between jobs!) and was doing no exercise whatsoever


----------



## Maarias

Nix - yes I have heard about the ivig price rise...    - I have no idea how I am going to justify that to dh...stick on the card and just hope he doesn't notice   - he's not at all convinced about all this immune stuff anyway...


I know, Carissa is leaving - shame! Hope whoever replaces her is as chatty.


----------



## Newday

Dr G has prescribed me 40mg of clexane but didn't tell me when to start it I'm doing DE also should it be 1x40 or 2x20m?
any ideas?
dawn


----------



## sarahh

Hi all, just a quick post from me as its late and i'm v tired. Sorry for delay in posting, laptop been away to be fixed!

The supplements: Wobenzym N - I got mine from www.synergy-health.co.uk - cost £39.87
Resveratrol 100mg - got 30 capsules on free trial from www.vitalrezv.com - took a while to arrive but it has now. Had to pay for the postage - is a US product but it arrived today from China!! 
Pycnogenol 30mg - www.healthspan.co.uk - cost £12.95

I also believe that Selenium as a supplement is meant to be very beneficial.

Omni also told me and I've read that tomato juice is meant to have anti inflammatory qualities.

Have also read about Royal Jelly - best to get it in its natural form (pure royal jelly) or mixed with honey as this speeds up absorption.

I have an article which is more like a book from Choice which I can forward on to anyone - I'm trying to wade through it at the moment.

Sarah x

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


----------



## sarahh

Just did another post and lost it    I'm having real problems with my posts - my screen keeps getting so far then flickering so I can't see what I'm typing.  

Was just updating on our situation.  Basically DH's sperm sample was dreadful.  99% abnormal forms, v. low count (2million) & morphology of 1 (i.e. not really moving).  Dr G suggested sperm DNA fragmentation test & karyotyping.  Anyone's DH had these?  He said will tell us whether worth bothering with them again or not      Oh, and if we do go ahead I need LIT AGAIN (Cath didn't you say he'd only ever had one lady who needed it 3 times??) well this would be my fourth   

Karen, good luck with the trying naturally, nice to see you on weds. 

Cath         you know I'm thinking of you. 

The rumour about the IVIG is correct.  Dr G said cost going up considerably, several hundred pounds, he's not sure quite how much yet.  Supplier issues.  

Sprinkles - great news about your TNF, at least something is going the right way eh?!  

Ells, sorry to hear you not been well again, wondered where you had been.  Hope you are feeling a bit better.  

Sorry but no more from me tonight, esp as DD having very bad eve so far .... off up the apple & pears again for me.... 

Sarah x


----------



## ells

Evening ladies,

Hope everyone is well.

Cath how are you feeling hun?

Lalaby, pred side effects - they are worse when you are on the max dose for a long period of time, I know for me I have gained  weight and they made me quite bloated   .  But I was on the max dose for 2 months and then another month reducing down.  I have lost the weight now though.  

TG how are you feeling hun?

SarahH, sounds like you have your hands full this evening. We have just had our karotyping done and I am   that it comes back normal.   

Omni, how are you hun?  Have you got a nice bump growing now?

Sprinkles, hope you are okay?

Hi to everyone else, hope you are all enjoying the weekend so far.

I have a question and hope you can help, we had our appointment with Dr G on 8th Sept, he said to phone in 2 weeks for the results.  I rang and spoke to Carissa on Tuesday but she told me to ring back at the end of the week as only 2 sets of results had come through, so rang today and still the same   .  This has worried me a little, should I be worried or is this normal   ? 

Hope everyone has a fab weekend, the weather is supposed to be lovely.

Ells


----------



## Sprinkles

Hi ladies

furbaby just woke me up meowing her head off, nothing wrong she just wanted some attention!!!  now I'm wide awake.

Shame clarissa is leaving I've always found her really helpful, hope next lady is as helpful.

sarahh if once you get on the site you click on the compatibility view tab at the top of your page (looks like a piece of paper ripped in half) that should sort the flickering problems out.

lalaby thanks for info on St Marys looks like I'll definately get shipped out then, just waiting for AF to arrive then I can call to see if I can be accepted, so am guessing if I ring in October I'll get treated in November??  

I put weight on too with the pred and got very bloated.  Just about losing the extra weight now 2 months after stopping it.

Sounds like manufacturers of intralipids are going to be rubbing their hands if ivig is going up so much, I've never had it and am lucky that my results say I react better to intralipids but DrG recommended a mixture of both so better get saving!

Ells can Clarissa call to chase up your results for you?


----------



## lalaby123

Dawn, i have been prescribed 40mg Clexane from day 5/6 of a 28 day cycle may be different for your treatment cycle. I have to take it in one go as far as I know as he said Once a day. 

Sprinkles, yes i think if you ring October cycle you will get treatment Nov cycle unless you need to be on a long protocol in which case you can insist on treatment the same cycle to start on day 21 or atleast that is what i understood

Ells, have you got your results yet? it does sometimes take a bit longer than normal to get the results. My endo biopsy took ages to materialise. I don't know if the lab was late or it was the admin process at Dr G's office. You learn to become patient but definitely chase her on Monday if you haven't got it yet. 

Cath how are you doing? I hope you are keeping calm and positive

Omni and Choice hope you are nurturing the little one growing inside

I started Clexane yesterday and am getting headaches from it. Starting Prednisolone today and dreading putting on weight and the other side effects as i have to be on it for 3 months given i am having IVF next cycle and then time to wean off. I already feel ravenous and haven't even started taking it yet! i think its partly psychological  

hi to everyone else and wish you all a good weekend
xx
L


----------



## deegirl

Hi Girls

Lalaby I have had intralipids and ivig in Sims Clinic Dublin.  I have already emailed Dr Gorgy and he will carry out more tests to check for LAD etc.  Also I haven't had intralipids assay to check how well I respond.  Just wondering, maybe some of you girls who have been to Dr Gorgy, does he see patients on Mondays?  (Really hoping he does as I'm off on Mondays so it would save me having to explain to boss etc.)  Thanks.  Hope everyone is well.

Dee x


----------



## lalaby123

Hi Deegirl

yes Dr G does see patients everyday so Monday would be good as you can do your blood tests as well. Make sure you go before 12. I'm glad to hear they do immune protocol in Dublin. Good luck with LAD testing xxx


----------



## sarahh

Just thought I'd say that I didn't really put too much weight on with the pred altho I was on it for quite a short time really but i did get terrible headaches for several days after stopping it.  Dr G said to stop it straight away and not wean off, so think it depends how long you have been on it whether you need to wean off.  I didn't really have any side effects from anything whilst on them (apart from the pain in the butt (Gestone) and bruises everywhere!) so you can feel ok.  

I forgot to say that my blood tests also show that the intralipids do bring my levels down - BUT my NK cells went up considerably rather than down!!!  And my TNF-a that I didn't take any Humira for has gone down!!!! Work that one out!! 

Sorry no personals again, off to have "bit of a chat" with DH!! 

Sarah x


----------



## Tokii

Hi Girls,

I haven't posted for a while, I just had a BFN last week with my FET. I'll be seeing Dr G on Wednesday, trying so hard to make DH come with me but he has refused so will have to go myself and will retest to check all my levels, I will also find out if Intralipids work for me. I pray it does what with the prices of Ivig going up.  Sorry no personals from me and it seems everyone is getting on with their tx.

My next plan is to go gluten free like Choice recommended, hope to keep that up, from organic to gluten   shouldn't really be a problem but DH said he won't be stuffing himself with any gluten free rubbish  .    it works for me and I will be ordering Resveratrol (Solgar) from nutricentre, it costs £20 for 60 capsules and the recommended dosage is 250mg with 50mg of pycnogenol (Dr Sher). I don't know when I'll be cycling next as I put my all into this, i believe it isn't my time yet and who knows a miracle could happen. it's also Clarissa's last day tomorrow, I hope Dr G gets some1 as nice as Clarissa cos she was so helpful.


----------



## omni

Hi everyone, sorry I haven't been arround for a while

Cath - so sorry to hear one of your blasts did not make it but glad that the transfer went smoothly. Hoping you've got a little fighter in there  

Lalaby- seems that you don't have a problem with CD57 - this seems to be quite rare - unlike NK cells and even TNFa. Good news! I have never heard of fox P3 but luckily it doesn't require any extra treatment. Great you have a nice GP to prescribe you with pred/clexane. Hope you get into CARE.

Bibie - most people seem to require 2nd dose of LIT. It is better to do it before transfer as I think it has its maximum effect about 4 weeks after. BUT you have had IVIg etc which will protect your baby until the blocking antibodies are raised. Once the blocking anti-bodies are raised you should require less IVIg. How much is 24gms IVIg in Belgium?.Goodluck for your test  

Jazz - I think I replied to you on the other thread. As was said, it is good you have tested and now know what needs to be treated. 

Kazzie -nice to meet you at Dr Gorgy's - hope it all work out for you this month!

Toffee – I got my wobenzym-N off the internet from the US as it was cheaper but it turned out I had to pay hefty customs duties to Fedex when they delivered it. Next time I shall get it from UK so at least I will know what I am paying. 

Toki – so sorry to hear about your BFN.  Try and get the intralipid test done to be sure – hopefully it will work for you.

Sprinkles – great news on your TNFa – most people with your levels seem to need 4 injections of humira!

Dee – yes Dr Gorgy works on Mondays but try and book an appointment for 11am at latest just in case you need to do bloodtests (some need to be done before 12 midday)

Sarah – I don’t understand - I also had 3 LITs so did Toffee and Peebum. I think Beattie may have had four – but of course most get by with just 2. LOL

Ells - funny you should ask now – I’m only JUST getting a bump in the last week or so – jeans are finally becoming tight. Actually happy to see some sign! I am glad you finally got your diagnosis and don’t have to go ahead with the operation. Have you got all your immune results back yet?

Unfortunately my levels have gone up again a bit and I have a small subchorionic Hematoma (SCH). I stopped the clexane / BA for a few days and did IVIg. I will do a scan this week to see what's happening. Nothing is ever plain sailing with me  

Hi to everyone else!

Omni xx


----------



## Han72

Hi all

hope you're all ok and enjoying what little is left of the weekend!

Just had a quick question for Sarahh - could you please let me know what meds and supplements you've had, since your original TNFa reading of 58?  Your situation sounds very similar to mine in that when I had an FET earlier this year, TNFa was raised before tx but I couldn't take any more humira at that particular clinic cos I'd already had 2 lots.  They gave me 25mg of pred and I had 1 infusion of IVIG the day after ET.  I tested early and got a BFP so they checked my immunes again and gave me another lot of IVIG. When the results of those post BFP immunes came back, it showed that my TNFa level was below 30 for the first time ever but NK's were raised for the first time   I suspect it was the pred that reduced the TNFa and the pregnancy itself is what caused the raised NK's but I'm not sure... It ended in a biochemical (possibly cos there was no IVIG involved in the fresh cycle when I produced the eggs  ) but  still, I was encouraged to see the TNFa's come down without humira.  Basically I really am curious to know what the alternatives are to humira for high TNFa so if you could please let me know what you've had and when, I'd be really grateful!

Many thanks!

xxx


----------



## lalaby123

Sarahh and Omni - thanks for your feedback on Prednisolone, I have started taking it so we shall see how i respond. 

Omni congrats on the growth of the bump i hope you get your SCH under control (i don't know what it is?) 

Tokii - very very sorry to hear of your BFN   you must be disappointed but its great you seem to have a positive attitude and are obviously a strong lady, as you said your time will come and in the meantime you are doing everything you can

I am having first round of intralipids on Tuesday. Not sure what to expect but i guess i will take a book and warm clothes from what i have read in the past oh and a million questions for Dr G!

happy weekend everyone else
xxx
L


----------



## deegirl

Thanks Omni and Lalaby, I will phone tomorrow to make an appointment.  I'm hoping I'll get one within 4 weeks, I wonder if that is reasonable to expect since he's a popular man!  Omni congratulations on your progressing pregnancy, you must feel so happy!  Lalaby I've had intralipids, they take much less time to infuse than IVIG.  The clinic in Dublin prescribed it to me without knowing how well my nk cells resond which I thought was a bit poor, I wasn't impressed with their attitude, they were't really interested in individual cases.  All the best girls.  

Dee x


----------



## ells

Morning ladies,

Tokii, sorry to hear about your BFN.  It sounds like you have a good plan ready, hope the gluten free diet works for you and you get your BFP on your next round!

Cath how are you feeling hun?  I do hope you are staying positive!!! Sending you lots of   and  

Deegirl, I hope that you will be able to make an appointment with Dr G quickly, my experience after only one appointment is that he definately gives you the personal touch and treats you as an individual.  

Omni, yey   for the bump.  It must be such a lovely sight, IYSWIM!!  I am still waiting for my results, I am going to phone Carissa again this afternoon to see whats going on as it will be 3 weeks tomorrow since we had them done!  

Lalaby, good luck for you first round of intralipids.  I am   for you that they do the trick!

SarahH how was your weekend?

Sprinkles, fantastic news on your levels   , I bet you are really pleased with that!

Toffee, how are you hun?

Choice - hope you are well.  Please pop on and let us know how you are doing.  

Hello to everyone else, hope you are all well!

Nothing new to report for me, going to be seeing my GP on Friday morning to see what he thinks about the tablets the specialist has given me.  He wanted to me to reduce the dose but I did that on Saturday and I have already had an effect   so I want to know if I can stay on the higher dose   or if there is something else I can take which is just as good.  Anyway, have a busy Monday   boo!!!  so I guess I had better get my   in gear!!  I will try and pop on later.

Ells


----------



## Cath34

Hi Ells, well my pma has all gone i'm afraid. Im day 12 today and the pains are there as usual. I have done a test today and it was negative so there we are I'm pretty sure thats my answer. I'm really not looking forward to moving onto cycle no7, in fact I am totally daunted with the whole damn thing. My immunes are good now and so are my embryos(although no testing done) so where do I go next? I really dont know.


----------



## lalaby123

oh Cath that is terrible news, but isn't it still too early to test? were you meant to test today and do they do a blood test sorry but i just want to hang on to some hope for you


----------



## Han72

Hi all

Cath hon -    obviously you've done this several times before and you know your body better than anyone but I just wanted to say please don't give up hope yet!  I've had negative pee-stix and a positive blood test on OTD before so the pee-stix are not infallible and there are plenty of ladies on here who've had a BFP even though they've bled and/or had AF pains....      and      for you hon!    

Love to all!
xxx


----------



## Cozy

Cath,

I know it's not looking good if you have a BFN on day 12, but its not over yet, there is still some hope. It could have been late implantation. I   the result changes for you in the next day or two. This has happened to people before.

Good luck    

Cozy


----------



## ells

Cath hun,     .  Dont give up yet.  You still have a few days for the test to change.  As you said everything is right on the immune side and your embies are good so dont give up hun.  Sending you loads of        and a fountian of PMA!!    .

Sending you loads of         

Ells


----------



## omni

Cath I had a BFN on a pee stick at day 13 but a BFP on day 14. 

I even heard of someone recently on the yahoo immunology site not getting a BFP until day 16. 

I know it doesn't look good but you know you must continue with the drugs for a few more days to be absolutely sure.

Omni


----------



## Cath34

Thanks everyone, I am actually only 6 days post ET. But the embryo is 12 days old as I had a day 6 ET. I think it may be too early for a urine test but an early blood test should give a level of less than 10? What are you thoughts ladies?


----------



## Sprinkles

Cath sending you a zillion's worth of hugs and hope        

Just a quick visit catch up later, am knackered


----------



## Han72

Cath hon, thats FAAAAR too early, esp if you're using a cheapie pee stick or even CB digi, they're just not that sensitive...  please don't give up hope yet hon!         
xxx


----------



## lalaby123

yes Cath, we are hanging on for dear life here and       for you. I don't know about blood tests this early but the most sensitive peestick picks up HCG of 25 or more and early on in the pregnancy it can be well below 25 so there is hope if its still early days which by the sounds of it it is. Good luck!!


----------



## Cath34

Ladies you are all so encouraging thank you so so much. I probably do sound like a real wally plonker and I was doing so good not thinking about it but as soon as the af pains start your mind doesn't stop racing and it got the better of me!!! Oh well like you all said, lets just wait and see.   Thanks again xx


----------



## lalaby123

ladies i am having intralipid tomorrow at 2:30 for the first time, if anyone else is scheduled for tomorrow let me know wud be nice to put names to faces 
in the meantime i have just found out that the cheap train ticket which i booked a few days ago has been a waste of money because they send the ticket to your phone and since i have changed my handset to an iphone i will not be able to receive the ticket as you are supposed to use the same handset as you had used before      i was so mad to hear this on the phone as they offered no solution and they said sorry you have to deregister your number and reregister again and then book tickets AGAIN. Sadly i had also booked another return ticket in October so that's £60 down the drain plus now i have to book a last minute ticket to London for tomorrow which is £65. so i am NOT a happy bunny    but i guess at the end of the day its just money and will ahve to come from the same pot that will be funding all the immunes ie overdraft )
sorry for the winge .....
xxx


----------



## sarahh

Cath hon, just PM'd you but before I read your posts from today here, sorry.  Should have caught up first.  Did you do a First Response?  Have you got one saved for tomorrow    Seriously hon, I'm really sorry it was a BFN today but none of the tests I did last round showed anything (well the faintest of faint lines if  you held it up to the light and squinted your eyes IYKWIM  ) and you know that i did have some level there......  

I guess you still have the pain of waiting another 2 days.....  just try to keep your spirits up just in case. 

AND you know that af type pains can still mean either way.  I had them last time and when I was pg with DD during 2ww.  I know i know, its just such a head f**k (sorry for the language girls but it is isn't it?!)    

Sending you the biggest   to keep you going. 

Tokii so so sorry to hear about your BFN  .  God this is so hard isn't it?  I think we must be the most determined girls on here to keep on going eh?  Hope you manage to work out a plan for "what next".  

Ells, hope you are feeling bit better, sorry the lower dose of drugs left you with problems again.  Do you know if that acu you see locally deals with male fertility issues as well as female?  Maybe you could PM me?  

No more from me, got a huge pile of ironing - yep, I know how to live   

Sarah x


----------



## Cath34

Thanks Sarah, yeh I think it was a bit soon for urine test. No i couldnt get a 1st response but i got  a predictor test, and it was rubbish, even the test line was faint!!!  You have to laugh, well I'm not really!! I've pm'd you as I was going to ring you at home but if its too late no worries I'll ring you tomorrow instead.
Thinking about it I think acupuncture can help with sperm, I will ask my lady who is a fertility specialist. Its def worth a go I think hon. xx


----------



## ells

Morning ladies,

Cath, way way too early to test hun!!!!  I think your embie is trying to give you a sign that its still there   .  Hope that your PMA returns today hun!

Sarahh, the acu is the one in Hill Lane, I will PM you the details hun.  They do both male and female IF issues, my DH went to them earlier this year.

Lalaby, hope the drip goes okay today.  How are you feeling about it?  How annoying about the train ticket too, can you not email them for a refund?

Omni, hope you are okay hun.

Sprinkles, I know what you mean about being knackered, me too   I think I could sleep for a week at the moment   .  

Hi to everyone else    .

Do you think that DR G will have a replacement secretary today?  I didnt get the chance to phone and chase my results yesterday and really want to see if they have come back yet as its 3 weeks today since they were sent off.  Another question, sorry ladies   , I have been taking baby asprin since our last tx in May, my level 1 bloods came back with clotting issues and thick blood, do you think I should continue?  Dr G said fro next Tx I would need the asprin and clexane.  Do you think I should stop self medicating?

Hope everyone has a lovely day, looks like it will be the last day of the warmer weather - here comes winter   !

Ells


----------



## Cath34

Ells, I have a clotting issue also and need to be on asprin for life and I would imagine you too. Clex will start when stimms start around day5/6. Are you homozygous or hetrozygous do you know?


----------



## ells

Hi Cath I dont know what I am yet I have high protein s and c which is something to do with clotting - I found that out in Dr Beers book  .  As the doctors didnt know!  I also have thick blood as my red blood cell count came back as high   .  I hope I am doing the right thing!
How are you feeling today     ?


Hope everyone else is okay.

Ells


----------



## Han72

Bonjour a toutes!

Yes Ells, the new secretary is in situ! Another South African by the sounds of it and her name is Akvile (I think!) Re your clotting issues, do I understand correctly?? Do you mean your results showed sticky blood in May and Dr G is making an assumption for your next tx based on that, without being aware that you never stopped the aspirin? I'd say have a word with him when the latest results come back in, tell him that you've been taking the aspirin and then let him make a judgement call based on all the information. I'd guess that the aspirin should have made a difference by now (pure assumption on my part, but it seems logical) and that it should show in the results of your most recent tests, but I really think he needs to be made aware that you've been taking aspirin before he prescribes any other blood thinning medication....

Cath sweetie - you're not a wally plonker    or if you are then I think most of us are too! Of course, I would never be one for early testing (or self-medicating  which usually just confuses the issue even more!) *Obviously self medication and testing early are strongly discouraged on FF* but we're only human, right?!   *Ahem* So, as someone who would never test early, this is how I wouldn't do it 
a - use first response early result tests, they're the most sensitive that I've found so far! CB digi and the rest just don't match up in my experience!
b - don't assume it's all over if I get a -ive result. It's gonna take that embie a while to get settled in properly and start pumping out enough HCG to be detected on a home test so even if it is -ive on the morning of OTD, I could still have enough in my blood for it to be detected on a bHCG test (and this has actually happened to me. Er... I mean, it would have done if I was the kind of person to test early..  )
c - if it's a fresh cycle and I'm worried about a false positive from the trigger jab, the best (and most expensive!) way to avoid confusion is to test daily from ET until I start seeing negatives, then you know for sure that the trigger jab is gone and any +ive you see after that is a true  (yes ok, it _might _ eventually turn out to be a biochemical, but a line is a line is a line!!!)

Lalaby - hope the drip went/is going well! But    re your train tickets!!! I would call back and kick up a huge stink, insist on talking to a manager the whole bit until they find a way to transfer those tickets, surely they know that you definitely bought them, so it's not like you're trying to rip them off. I'd say your handset broke or something so it's not your fault you don't have the same one anymore, cry and tell them you're going thru IVF and you can't afford to pay again (all's fair in love an tx you know!). Say whatever you have to but afaic, NO WAY should you have to pay again  !!! I really hope you manage to get somewhere with them   

Sarah hon - thanks so much for your PM, much appreciated!! How did you get on with the ironing If you've run out, you can have some of mine if you like    

I'm off to see my consultant in Paris tomorrow. Really hoping he's gonna be a good boy and let me have 25mg of pred daily during tx as well as the Clexane and aspirin that he usually gives me anyway. Really not in the mood to argue with him about it but without that pred support, it just ain't gonna happen! I also need to get the results of my NK assay from Gorgy, just called for the second time today and been told, once again, to call back in an hour.....  Oh so if any of you are thinking about putting a call in right now, FYI Gorgy's answering the phone himself so I figure the sec must be at lunch...

Love to all!

xxx


----------



## ells

Hi Nix,

Dr G knows I have been taking the asprin, he said that I would need to do the asprin as well as the other clotting bits and pred as a minimum.  He had my level 1 results to look at.  I dont know if I have sticky blood but I know that he said and my GP have said that they think its a 'clotting' related issue.  I am sure that my level 2's will tell me more   .  I have spoken to the secretary this morning, she seems nice but is referring everything back to Dr G but she has to learn right.  She has promised to phone me back.
Good luck with your appointment tomorrow - its sounds really glamorous going to Paris to see your doctor.  I am sure he will let you have all the drugs especially if you have had most of them before.

Ells


----------



## Peanuts

HI girls

Sorry for butting into your thread, but hoping you can give me some advice.  I've just had my 4th early m/c and finally decided to take the plunge to go for immune testing - not sure why its taken me so long, just find it all a bit scary! 

How quickly can DrG see a new patient?  m/c just started on Sat, so not sure how long I should wait.
Will DrG do the blood tests for level 2's at the 1st appt, or do they have to be timed around your cycle?  All my level 1's have come back ok, except ANA's slightly raised, so not sure what they'll find with level 2's.
Will I bring a copy of my notes with me or should I send them down in advance?
I live in Edinburgh, so would need to travel down for appts, is it correct that DrG will work with a local ACU during txt, but set the protocol and additional drugs?

Any other hints and tips for an immune newbie would be appreciated!
Thanks 
Dawnx


----------



## Cozy

Hi peanuts,

sorry to read about your m/c   

You dont need to wait to see Dr G, he will be able to do tests anytime. You can get appt's pretty quickly, but if you want the tests doing the same day as a consultation you need to go Mon/Tues or Weds morning for your appt. Its up to you how long you wait before you make the appt, I guess it depends on whether you want to move forward and try and get explanations for things or whether you need a bit of time out before you start doing anything else.

Depending on what tests you have it will probably cost anything from £1,000 to £1,800. Its expensive, but it could be money well spent if it helps you get pregnant and keep it.

You can either just have your immune treatment done with Dr G and have IVF elsewhere or try naturally or he can do the full package.

You can just take a copy of your previous test results with you. He will ask you about previous cycles/ miscarriages etc when you see him and make his own notes.

I wish I'd known about Dr G before I did my last 2 cycles, I might have had a different outcome and saved myself some money.

Have you got the Dr Beer book?  Its called is your body baby friendly and it is a book well worth reading. It explains alot and helps you to decipher the blood test results. 

Once you have had the tests done and got the results there are people on here who will be able to help you decide what your results mean and the best course of action


Cozy


----------



## lalaby123

Hello all just cheking in from dr g intralipd room left arm us freezing itherwise all is good 
new sec is nice akvil is Lithuanian 
ivig price won't go up too much he has found a source 
that's all for now folks xxx
ps who is victoria?


----------



## Han72

Oops! Just goes to show how rubbish I am at spotting accents these days! How could I not spot the diff between Lithuanian and SA ??  (Maybe she's a pretend Lithuanian and she's from Cape Town really   ) WOOHOOO fab news re the IVIG hon       Sorry about your cold arm tho 



lalaby123 said:


> ps who is victoria?


 Er... I dunno  Why do you ask?!

Peanuts hon -  so sorry to hear of your miscarriage hon  Re your immunes, if you get them done asap, I think they'll be a bit squiffy cos of the m/c but they might actually give a clue as to what caused it, if that makes sense...? Please give him a call and see whether he advises coming in asap rather than waiting for everything to get back to normal again.    again to you hon

Ells chick - if Gorgy hasn't mentioned stopping the aspirin then I'd keep it going.... Bless you, glamourous, me?! I'm sat in a flat 25 miles outside Paris wearing DH's trackie bottoms and a jumper that shrank in the wash. Oh and my hair is short and orange  due to a home hairdressing mishap   does that sound glam to you? Seriously   

Love to all!

xxx


----------



## omni

Hmmm... Victoria?  

Might that be Choice!!!  ^beware^


----------



## Cath34

Yes it is choice.   She's doing fine.


----------



## Han72

Oooh right!!!  I didn't know that was her real name!  Glad to hear shes ok! I hope she comes back because she was a positive mine of info re immune testing!


----------



## lalaby123

Hi girls I was in the intralipid room with a nice lady who dr g had gotten pregnant and he asked us if we knew Victoria who was in the waiting room and we both said no and he said she is v active on the MSG boards so I said I bet I know her but by her pseudo name sadly I didn't see her again but good to know it was our very own choice!!
I got my bupa form from dr g   now just waiting for the invoices he is a sweetie and I am getting the hang of him 

cath good luck with the testing it's so nerve wracking 

Peanut sorry to hear your losses dr g will be able to help you uncover some reasons behind them good luck 

Love to all xxx


----------



## Toffee Girl

Hello All

Sorry to have been so quiet these last few days - don't know where the time goes!!  

Cath - hope you are a bit brighter today.  These few days of limbo are very much the hardest - and I agree with Sarahh that it just messes with your head.  That's why I was so cheerful after my BFN - I was just relieved to be out of the mind f*** phase as Sarah so politely called it!  You may well get the result you want - just hang in there.  

Thanks all the hellos and - Sarahh - thanks for the supplement info.  I have ordered Wobenzym N.  There looks to be a lot of good data out there about it.  For those of you (like me) who are late to discover some of these other alternative things, it's an enzyme supplement which works to normalise your immune system.  I have also bought nettle leaf extract to bring down TNF-a levels (and ginger too), pycnogenol and turmeric for their anti-inflammatory properties and am trying to drink green tea and red wine daily (both of which also reduce TNF-a and have anti-inflammatory effects) - the red wine is easier to face than the tea!

I have to say that the data on Fish Oils is a bit of a concern - I know lots of people are taking the Eskimo fish oil, but there was one study that showed this boosted TNF-a levels.  I have only taken the Zita West fish oils/DHA supplement since the spring and my TNF-a has only gone up this year.  Not sure on this one.

Can anyone help me with a question on humira?  I had a TNF level of 39 in March, did the two Humira jabs and the level went up to 53.  It is now (after three consecutive months with IVIg, clexane, steroids and some intrallipids, plus 3 lots of LIT but it only working after the 3rd go in August) down to a glorious 51. Dr G has recommended I take two more jabs during october, prior to starting stims around Nov 15th.  Has anyone else done a second lot of Humira jabs and how far apart were they in relation to your IVF cycle - any success with it a second time around?

Peanuts and Tokii - so sorry to hear of your news - big  

Love and luck to everyone else  

Toffee Girl x


----------



## Peanuts

Hi girls

Thanks for the kind messages and hugs, really appreciate it, especially from FF's who know how it feels  

Cozy - thanks so much for your help, I've been on this site for over 2 years, so feels funny being a newbie again!  I read the Dr Beer book about a year ago, but was so overwhlemed by it all.  Think I'll have to dust it off and start again!  I think I'll need a bit of time before going to see DrG, but will give him a call to see what he advises.  

Thanks again, and no doubt I'll be back with lots more questions in the ocming weeks
Take care
Dxx


----------



## Han72

Bonjour!

Blimey TG - don't tell Zita about the red wine, she'd have a fit!     Did you know that red wine is known on the Poor Responders board as "womb juice"     Have you got a link to the article on fish oils raising tnfa by any chance  Also FYI my tnf-a shot up after taking humira so are you sure it was the eskimo oil which was the cause of your levels spiking like that?  I know it's not a popular view on this board but I am firmly of the opinion that humira doesn't work for everybody.  I'm not saying it doesn't work full stop, just that I think it's not suitable for some.  I had 2 lots prior to my FET last December, original level 39.8 my levels spiked to 44.2 after the first lot then came down to 35.6 after the second lot but they never got below the magic number until after I'd done my FET cycle with pred and IVIG then they dropped to 27.9 - incidentally I had a chemical preg that time round....     I dunno I just really think that steroids and ivig/intralipids is a viable alternative to dose after dose of humira.  Thanx also for that info about alternatives, my mum has been going on about turmeric for aaages so I bung it in just about every savoury dish that I cook! (If you like nice brown roast spuds and you par boil them first, bung a bit or turmeric in the boiling water, gives em a lovely colour!)

Cath hon - how are you feeling today?   

Peanuts - pls do give Gorgy a call as soon as you feel up to it,  I may be wrong but it seems to me that it could well be very useful to get a snapshot of your immunes at this point in time - to see what happens to your system when you get pregnant and maybe explain why bubs couldn't hang on...      

Better go and get ready to see the doc later today, love to all!

xxx


----------



## blueytoo

For those that have seen Dr G/Dr Eskander and have Bupa did you have to pay anything direct to the clinic? Normally Bupa pays clinics/consultants directly without a patient getting involved but some posts on this and the other Dr G/Bupa thread have confused me!

Thanks

Claire xx


----------



## lalaby123

Claire- you have to pay Dr G and then claim back from Bupa.


----------



## blueytoo

lalaby123 said:


> Claire- you have to pay Dr G and then claim back from Bupa.


Thanks lalaby., much appreciated.


----------



## lalaby123

Girls and specially Ells and Claire.....not to confuse you all, can i just say that I am with Bupa International and with them I have to send in a claim form, signed by the relevant doctor with my claim. With Dr G you have to pay him first and then claim the money back. I would check with your insurance what their procedure is. I know with normal Bupa you only need an authorisation number. I think if you are with normal Bupa, you pay Dr G, then Dr Eskandar claims the money back and then they reimburse you....not 100% sure.


----------



## lalaby123

hi everyone, 
today (day after my intralipid) I woke up with a very puffy face, bad ingestion all day and feeling very tired, lacking energy and sleepy. I am not sure if its the after effect of the intralipid or the fact that I forgot to take my prednisolone yesterday . wondered if anyone else felt similar symptoms. 

By the way, i have just realised we are always the most active chat room on the IVF General Chit Chat for the UK!!??

Also wanted to say it was nice to hear of two pregnancies at Dr G yesterday. We forget there are lots of women who he may treating that do not come on these boards and whose successes we don't hear about. 

Cath, hope you are hanging in there. 

love to all
xxx


----------



## Cozy

Claire,

I am with BUPA and you dont have to pay anything up front. Just tell BUPA what you are having done and say its with Dr E at FGA and they will give you an authorisation number to give to the clinic when you go. DR G is not covered by BUPA. You dont have to fill in any paperwork and you can self refer to FGA.

Alternatively, as I have done. I paid for the treatment (£1800) then got an invoice and sent it in. I havent received any money or letter back yet. I didnt know you could get these tests paid for until after I had had them done, but they did tell me I was covered and would be re-imbersed when I spoke to them after I had my tests done. 

The price you will get charged from FGA is alot less if you pay it yourself, they charge BUPA a hell of a lot more.

Cozy


----------



## Toffee Girl

Hi All 

Nix re- your thoughts on humira vs IVIg and intrallipids - yes i agree with you but neither seems to have worked for me so far as i did the standard two jabs of humira in April and I had a flare from 39 to 53, and since then I have had 2 or 3 intrallipids, 2 IVIg and still only a decrease from 53 to 51.  Right now nothing has worked.  Is the answer more humira?  Or given that my LIT has recently worked, now with better LAD levels, perhaps the TNF levels will begin to decline over time?  Who knows!

All the best everyone - Cath, I hope you are ok  

Toffee Girl x


----------



## Pinpin

Hi girls,

Sorry I haven't posted for a while I started stimms today on my NHS cycle and saw again Dr G today also as having all the immune done with him.  He's given me my prescription for the clexane, prednisolone, gestone and gave me my appts for intralipids next wedn 7th oct and IVIG on Friday the 9th oct. I wanted to ask you girls is it normal to be having them both on 2 days appart last one being 4 days before EC?
Finally he told me not to take my last injection of humira which I was supposed to have tonight as he said he is now confident that my TNFa levels are low enough (27 at retest 3.5 weeks ago and had 1 more humira since so I had 3 humira injections in total). Again can someone tell me if it is ok to stop and have the last humira injection 2 weeks before start of stimms?

Lalaby - I hope you're feeling better after the intralipid? Also I wanted to tell you that I have been on prednisolone many times for long periods (2-3 months) due to my IBD and have not had any side effects appart form increased appetite but no weigth gain and feeling like I had more energy.

Ells - I feel for you hun and hope that ou feel better very soon. I too have IDB (ulcerative colitis) and was diagnosed 6 years ago. I hope your Crohns gets under control very soon and don't hesitate to PM me if you need anything.

Cath - I have everything crossed for you hun    

Sprinkles - What did Dr G say about humira for you, are you taking anymore? When are you starting stimms?

Hi to everyone else Omni, Sarah, Nix, Toffee girl, Choice we miss you sooo much.

Love
Pinpin x


----------



## lalaby123

Pinpin, good luck with your new cycle, sorry can't help with the intralipid/ivig question. I always thought you would have a longer gap but if that's what he suggested then i guess he thinks you need that. And great that you you don't need to take any more Humira  all the best for the stimming xxx


----------



## Trueblood

Sarahh

Dr G suggested sperm DNA fragmentation test & karyotyping for us too. We had a ec/et  (19 Aug) the same time asyou, however using donor eggs (a friend who has two kids (1 3 years the other 1 and a bit) we have 13 eggs, 10 mature, 7 fertilised but had two go in on day 3 as eggs not worth risking to blast. Grade 2 7 Cell and Grade 2 8 Cell.  DH Spem as far as i can remember abnormal forms 89% not sure on the rest.

I have been suggest an endo biopsy, LAD retest and Gene nation (Thrombophella) and Hysteroscopy to check out my womb.

I did not have a chemical pregancy

Mr G gas tried everything to get my lining up but only managed 7mm he is unsure what else we can try as medicine wise we had estraderm patches, viagra, progynova , asprin etc..  as well as accupuncture.  I also went as far as having fresh pineapple juice.

Ironically had a scan last week and naturally day 10 my lining was 7.6 mm


----------



## Pinpin

Thanks Lalaby - that's what i thought that a longer gap should be left between the intralipid and the ivig... he started off by saying i should have the intralipid this friday the 2nd oct and the ivig on the 9th oct but then change his mind and said 7th ad 9th... I wonder if this has anything to do with my LIT with Dr A being scheduled on 6th oct Maybe that's because he prefers to give me the intralipid and ivig after the LIT?
I just want the treatment to be as effective as possible and quite scared i might get some side effects if i receive everything within a couple of days and not really effective...  

thanks for your help girls 

Pinpin x


----------



## Cath34

Hi girls, sorry I've been off the scene this week, its been one hell of a week really.

Well I guess its time to say that its an unbelievable      for me!!!
I actually had my bloods done on Monday 6 days post 6 day ET and my level was 27!!! Yesterday I had another and it was 73 so I guess I am pregnant!!! Absolutely unbelieveable considering it was FET and only 1 survived the thaw!!! Its still early days though and I am very cautious. Off for IVIG tomorrow 

Anyway I have always had faith in Dr Gorgy and I totally believe that if it wasn't for him and Choice 's invaluable information I wouldn't be here posting my good news.

I will post later all of the extra things I had this cycle which could well have contributed to my bfp!!!!!


----------



## ells

Seeeeeeeeee well done hun.   Thats fabulous news yey for Cath and her little embie.  

Hope everyone else is okay.  I am just about to leave our London office so gotta get myself logged off but hope you all okay and I will pop on later,

Yey for Cath!!!!


----------



## Newday

awwwwwww GREAT news cath
love dawn


----------



## Cozy

Cath,

 on your  

      

I hope you have a happy and healthy pregnancy

Cozy


----------



## omni

Hey Cath, want congratulate you here too!

Omni xx


----------



## kara76

just gatecrashing to say a massive congratulations to cath

you did it girl


----------



## Cath34

Thanks everyone,   it still hasn't sunk in!!! It just goes to show when you think its all over, its not!!! If I can get there, anyone of you ladies can. Just stick at it, like I have, even though at times I have been completely daunted with it all!!!! I guess when it's meant to be its meant to be

By the way has anyone had IVIG through BUPA? I tried today but they wanted to speak with Dr eskander and OMG not sure if thy will ask am I'm pg and if so by IVF/?? Nightmare. They have just said we need more info before making a decision but surely how I got pg is irrelevant? If I need it I need it? here we go!!


----------



## Han72

Aww Cath, that's FANTASTIC!!!!! YAAAAY!!!                  But how on earth did you convince them to do your bloods so early?!  Mind you I did once get the ARGC to do mine 7dt5dt cos I'd had a +ive peestick so I guess it's not that unusual!  Whatever the important thing is ..... YOU'RE PREEEEEGNAAAANT!!!!!    Congratulations honey!!!!

Pinpin hon I'm sorry but I can't advise as to the gap between IVIG and Intralipids... I understand there's a really good yahoo immunes chat group, maybe you could try there..  But why would Dr G suggest anything that wasn't really "ok"? I know I don't agree with the necessity of everything he prescribes, but surely if he thought there was the slightest suggestion that doing it that way was going to do you any harm he would never suggest it...?

TB - there's a couple of other things you might want to try to get your lining to pick up, it sounds silly but are you drinking enough?  You should really be aiming for 2-3 litres of liquid a day, be it water, organic milk or fruity teas or whatever you can pour down your neck!  Also brazil nuts! These contain loads of selenium and I think aunti Zita recommends you eat something like 5 a day to help that womb lining get nice and thick 

TG - Hmmm, now I wonder whether it was the steroids alone that brought my cytokines down...?  Do you think Dr G would consider trying you on pred or dexamethasone for a few weeks, to see if that makes a difference Also, are your NK's high too or just your cytokines?? Just wondering if your case is the same as mine, low-normal NK's but high cytokines...

I had a phone consult with Dr G today, the NK assay shows that intralipids work for me (yaay) but as mentioned above, they aren't high and he says if he didn't know I had a history of raised cytokines he'd have thought I was fine  I'll be having my tx here in France end Oct/beg Nov and DrG says he'll do the intralipids for me on day 5 (and day 7, which seems a bit odd but there you go) of stims but following from TG's experience I wonder if I'm not better off just sticking with the steroids... hmmm decisions, decisions!

Love to all!

xxx


----------



## ells

Evening ladies,

Cath congrats again, i bet you are both on   .  Its such good news, well done!!

Pinpin, good luck with this round, I am sure it will all go fine.  I will pm you about your UC thank you hun  , I am having all sorts of probs with my tablets etc. Seeing my GP tomorrow morning so hopefully he will be able to help a bit.

Omni, how are you feeling?  Is that bump growing a bit now?

Sarah, how are you hun?  Did the acu info help?

Sprinkles, hope that you are okay too.  

Lalaby, how are you feeling today?  I hope that you have some more energy.

Nix, you are not too far off starting tx again.  Hopefully we wont be too far behind either, we are hoping to start again in December/January.

TG, hi hun, hope you are okay.

Choice, hello, hope you and bump are okay.

Cozy hi hun. 

Hi to everyone else, hope that you all okay and feeling good.

Well my results havent come through today   , I spoke to Alivin (?) Dr G's new lady and she said she would post them to me Tuesday by 1st class post so I figured that they would be here waiting for me.  I had butterflies in my tummy on the way home from London and they havent arrived   .  I think i will ask her to fax them over to me tomorrow morning when I am back in my office, are the results on one sheet of paper?

Dh is cooking tonight  - lucky me - he's trying a Jamaican curry   .  I am sure it will be lovely - if its dodgy at least my tum cant get any worse   .  Only kidding, he's quite a good chef really   .

Enjoy your evenings ladies.

Ells


----------



## sarahh

Hi all, 

Firstly, just want to say WOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOO Cath, see, I knew you could do it hon.  Sorry no smilies, the extra ones don't seem to be working on my pc but sending you heaps of   and   for a happy and healthy pg for you.  I'm sooooooo pleased for you. 

Toffee Girl - what dose of Wobenzym are you taking?  What have you read about it?  I haven't read much, just going on the fact that Choice said good to take for our issues so I got it!!!  

Trueblood - sorry about your BFN too.  Are you going to have the sperm tests done?  

Pinpin - I had the IVIG & Intralipids a few days apart with no symptoms whatsoever, didn't feel a thing.  The only thing that hurt was the needle going in my arm.  No other problems whatsoever and I didn't even take the antihistamine because I was told by Dr T (Greece) not to take them so close to having had LIT.  Try not to worry about it all, Dr G is very considered about what he recommends for you.  

Nix / Toffee Girl - I guess at the end of the day if we knew what brought the levels down and what didn't then we'd be laughing wouldn't we?!!  At the end of the day our individual make up is different and that is why some people respond and others don't and why some treatments work for some and not others.  Get me and my 3 x LIT with still not high enough levels!  If only there was an answer eh?  Maybe we'd all be a bit more sane (& a bit more well-off too  ).  

Ells - have PM'd you.  Hope the Jamaican curry doesn't cause too many problems    How annoying about your results - def get them faxed tomorrow.  Will prob be 2-3 pages.  

Off for an early night tonight, DD been waking twice every night for last god knows how long, I'm knackered!!  And unfortunately she never wants DH, just me!!!!  

Sarah x


----------



## lalaby123

CATH WOOOO HOOOO WOOO HOOO              
that is great news!!!! 
I am sure Dr G will look after this pregnancy for you. All the best with IVIG tomorrow and I will   your HCG will keep on doubling
this has made my night ))


----------



## Pinpin

Cath -         
Congratulations hun! Oh this is such good news you must be absolutely over the moon after being so scared it hadn't worked. I wish you a  very healthy pregnancy

Ells - I hope you get those results faxed over to you tomorrow   i know what you mean about the butterflies when awaiting the results, I had them too. The results come on a quite a few pages mine were on about 8-10 pages I think and I had everything done.

Thanks everyone for your reassuring comments about Intralipids/IVIG.  I had to deal with a bit of an issue today.. we're having our LIT with Dr A next week and we had all our bloods done by our GP (or so we thought) when my DH when to pick them up last wednesday he discovered that they had forgotten to do the HVLT1/2 and so they drew his blood again for that on the thursday and today we found out the results take 2 weeks to come back   I had to call Dr G who helped me out and worked some miracle as usual so that our appt  with Dr A is now posponned to thursday and DH will have his HTVL test done at the private lab next to Dr G.
Dr G is a very caring Dr I can't believe how much he does himself alsways talking to his patients on the phone, he is so approachable.

Hi to everyone else 

Pinpin x


----------



## Cath34

Thank you so much everyone, you're so kind. I know how hard it is to post everytime someone gets a bfp and I never thought I'd be the one receiving the well wishes but I'll take it all the same!!  Just hang in there everyone, I really hope that my story will give you all hope as really was a mystery -IYKWIM! Only 1 frostie and I didn't have ivigon ET I had an infusion 10 or so days before but due to only 1 embie we decided to leave it and save the £ for the fresh cycle!!!!! And I need IVIG believe me with 34% killing NKS!
Anyway i'm off for some more with Dr G today!!

Heres what I had extra this time

1. Viagra (for lining and blood flow) every 6 hrs ( and through the night!!!!!!!)
2. Oestrgen tabs and patches HRT
3. Doxycycline antibiotics (they use these in the USA- to clear away any PID or bacteria as such.
4. Clexane 60mg (as normal) asprin
5. 25mg Prednisolone   well actaully I increased these myself from ET to 40mg until after 1t blood results !! 6 days post day 6 ET   as I didn't have ivig. Naughty me i know. 
6. Assisted hatching on my basts
7. Acupuncture before and after et


----------



## Newday

Hi cath I have .Doxycycline but concerened I may get thrush.
I have 100mg tabs what dose did you take? and for how long?

Dawn


----------



## omni

Hi Dawn,

I've heard that, if you are taking antibiotics, it may help to prevent thrush if you also take probiotics (friendly bacteria) at the same time - you can get capsules from health food stores. Anyone else know about this?

I think I took 100mg per day of doxycycline for 3 weeks up until ET this cycle. Again interested to know dose anyone else took - and the duration. 

Cath enjoy your IVIg today  

Omni XX


----------



## ells

Afternoon ladies,

Well D day has arrived I got a faxed copy of my results (finally!)   .  Would you ladies be so kind as to interpret them for me please:

NK Assay
50:1                        16.8
25:1                        11.3
12.5:1                      7.2
IgG 12.5 50:1            6.7
IgG 12.5 25:1            8.5
IgG 6.25 50:1            7.4
IgG 6.25 25:1            9.0

% CD 3                    71.9
% CD 19                    2.0
% CD 56                  22.7
% CD 19 19+ CD 5+    20.8

NK with Intralipids

50:1                        3.8
25:1                        1.8

LAD
Flowcylometry            Negative
T Cells IgM                1.0
T cells IgG                1.0
B Cells IgM                41.4 
B Cells IgG                8.5


TNF-A:IL -10              39.6
IFN-g:IL-10                24.4

DQ Alpha
DH:                        0501 0501
me                          0102 0201

MTHFR                    Normal


Help?

Omni, with the antibiotics you take accydopholus (?) not sure I have spelt it correctly but you but it in the health and diet shops or chemist.  I have to take it whenever I am on antibiotics!

Hope everyone is okay.

Ells


----------



## Toffee Girl

Hiya All

Cath - so pleased to hear your news  , the more of us that get pg with Dr G, the more I am convinced that those of us who are not yet just have to keep going.

Love to all 

Toffee Girl xx


----------



## lalaby123

Ells, re your results

your NK assay ie the killing activity is Ok however two of your NK cells are elevated in quantity (the bottom two) so you will need the usual IVIG/intralipid, you are lucky intralipid works better than IVIG for you so that will save you some bob!

Your LAD is negative so you will be recommended LIT

Your TNF-alpha is quite high - should be under 15 so he will suggest Humira

Cath hope your IVIG went well and Dr G must be so pleased 

Everyone else hope you are getting ready for a nice weekend. I have dinner on and guests arriving in a tick, just wanted to say that I am suffering from acid reflux & insomnia for the last few days and I am guessing it is a side effect of the drugs i am taking. Also my left arm where the intralipid drip went has turned red/bruised in a few patches...wondered if anyone has had these reactions and if its normal. 

As for probiotics/acidophilus I suggest taking the best quality one you can get your hands on. It has to have at least 10 billion live bacteria otherwise it will do bugger all. The cheaper makes are no good as the way they process them by the time they are packaged there is hardly any live cultures left so its worth spending the money to get a good one. I have suffered from a lot fungal/yeast problems so I have been through the mill. 

have a good weekend everyone
xxx


----------



## sarahh

Lalaby - can you recommend a brand you use ??  I always get thrush when i take anti-b's so would be really helpful.    I didn't have any reaction to either Intralipid or IVIG infusion, hope it gets better soon. 

Ells, Lalaby has pretty much hit the nail on the head, LIT and Humira will be recommended.  Although I thought that TNF-a was meant to be below 30 not 15, but yours will still be regarded as high.  The good news, as she said is that intralipids (£350 per infusion vs £1350 per infusion for IVIG) does seem to work well for you.  Although I suspect Dr G will still recommend that you have at least one of both.  Thanks for the PM.  

Cath hope the IVIG went well.  Was it £1350? 

Quick hello to everyone else, sorry no more personals, v tired. 

Sarah x


----------



## Han72

Hiya just a quickie to confirm that the normal range for TNFa is 13.2 - 30.6 and for IFN-g it's 5.8-20.5 

Love to all!

xxx


----------



## ells

Thanks Ladies - I thought thats what I would need.  I am assuming that our DQ Alpha's are okay?   I am sure that they are but there wasnt an example in the immune bible when I read it earlier!  I am relieved that I dont have to do IVIg but I know the humira is good for crohns so I might see if I can twist my GP's arm into getting on a px   .  If you dont ask you dont get   !  

Lalaby hope dinner went well!  Sorry you are getting some side-effects I hope that they dont last long.  

Sarahh, I used to buy the acidophilus they sold that was in the fridge and it worked a treat.  You need to avoid those with any sugar and yeast as they will defo not help!

Nix, thank you!!  How are you?

Hope everyone else is okay?

I am totally shattered had a really busy week at work loads of extra stress as we have to make 3 members of the management team redundant   and one of them I work very closely with and he has a wicked sense of humour and really does keep the office going most days and i just dont know what its going to be like with him gone   .  I am   that my boss doesnt want to involve me in the meetings with them as I just dont know how I will be able to look at the them.  The timing is just terrible, right before Christmas, I asked them to postpone it until the new year but you can guess the answer I got.  So I have another fun week at work ahead of me next week   .  

Saw my GP this morning and he told me to up my tablets again to try and 'regain' control but thinks I will end up on a low dose of pred as its stronger!

Off to bed for me now  I am totally  !  Nightie night all.

Ells


----------



## blueytoo

Cozy said:


> Claire,
> 
> I am with BUPA and you dont have to pay anything up front. Just tell BUPA what you are having done and say its with Dr E at FGA and they will give you an authorisation number to give to the clinic when you go. DR G is not covered by BUPA. You dont have to fill in any paperwork and you can self refer to FGA.
> 
> Alternatively, as I have done. I paid for the treatment (£1800) then got an invoice and sent it in. I havent received any money or letter back yet. I didnt know you could get these tests paid for until after I had had them done, but they did tell me I was covered and would be re-imbersed when I spoke to them after I had my tests done.
> 
> The price you will get charged from FGA is alot less if you pay it yourself, they charge BUPA a hell of a lot more.
> 
> Cozy


Hi Cozy

That's great to know and exactly what I thought should happen as I have used Bupa for many years now and never had to pay a penny up front. I will just email Dr G to double check he is happy with that though as if I do have to pay up front and then claim I will need to move money from my business account to my personal account first!

Thanks again

Claire


----------



## deegirl

Hi Claire

Would be really grateful if you would let me know how you get on as I have an appointment with Dr G on 2nd Nov and BUPA have given me an authorisation number.  I was speaking to Dr G on the phone and all he said was to make sure I get a GP referral as it will help get the money back from BUPA.  Wish you all the best.  Thanks.

Dee x


----------



## lalaby123

sorry Ells, yes TNF-alpha upper limit is 30, i was thinking NK assay when i wrote 15 and i had my chef's hat on instead of doctor's hat ;-)

As for Acidophilus, the one I take is called Flora Synergy, but i don't think it is readily available as I get it through my naturopath. I know that a good brand is BioCare which is sold through Nutricentre and they have different strengths but min should be 10 billion bacteria to combat effects of antibiotics. 

still suffering from major heartburn here, have to find some natural remedy to sooth it as it is becoming a real nuisance. Switching to enteric coated aspirin hoping that will help. If anyone has any experience of this please share your secret weapons...

happy weekend everyone
xxx


----------



## Sprinkles

Peanuts and TB   so sorry for your news wishing you the best of luck with the rest of your journey xxx

Lalaby ~ sorry heartburn is still there, sorry cant help didn’t have any reactions to the intralipids last time.  Hope it eases soon x

Pinpin ~ what a pain about the bloods but you’re right DrG is really helpful and goes above and beyond to help out.  Sounds like we’re quite similar for humira.  I have my next two ready and waiting but cant take any until know when EC will be.  All that depends on whether St Marys is back treating people again, as they are shut for refurbishment, don’t think they are ready yet so they are shipping people out to other clinics which delays everything a month from what I can gather.  So could be Nov before start stimming which means I could potentially take another one.  Am waiting for AF to arrive which kind of has today then need to go St Marys for bloods and scan and then ring Dr G to see if should take or not.  Everythings dependent on something else it’s a logistical nightmare.

Ells ~ hope the curry was good and glad you finally got your results.  Bad news about work and as you say terrible timing, hope you get out of the meetings.

Sarahh ~hope you managed to get some sleep

Cath ~ huge congratulations honey   so pleased for you, take good care of yourself.

Hi to everyone else hope you are all bearing up, and hello to Choice if you're still reading hope you and bubs are doing well x

Well me not been too good this last week, full of a cold with a horrendously sore throat, probably due to TNF reducing and being more susceptible to infection.  Had no choice but to go into work so have basically spent the week struggling to get out of bed, working, coming home having a bowl of soup and diving back into bed, nightmare.  Am feeling a bit better now just wish throat would go away.  Anyone know if having this will make my TNF flare? Have tried to avoid taking any medication apart from paracetomol as am scared that anything I take will interfere with either my greatly reduced TNF or the LIT.

Am off to Greece again on Tuesday, well Monday night to London, for second LIT, and hopefully final one and by then should hopefully know about next cycle, fingers crossed.

Hope everyone has a good weekend, its blowing a gale up here not nice.


----------



## Newday

Thanks for advice I have ordered some probiotics from Holland and barretts they have over 20 million bacteria in as suggested by lalabay hopefully this will stop me getting thrush
Thanks
dawn


----------



## lalaby123

Dawn -  sorry to be fussy but its BILLIONS you want not millions. Usually the Holland and Barratts supplements are not the highest quality and contain things that you don't want such as yeast/dairy etc. Anyway now you have ordered it give it a try and see if helps. If not switch to BioCare brand from Nutricentre and minimum 8 BILLION and these ones you need to keep in the fridge. Hopefully the ones you have will help anyway. 

Sprinkles, hope you feel better soon and get your treatment date fixed soon, its frustrating as everything is hanging on that...

Cath - hope you are doing well and putting feet up

Ells - hope your results have given you some answers and some hope for the future

Hi to everyone else and hope you are all having a nice weekend
xxx


----------



## Cozy

Hi Everyone,

just to add my two penneth in about probiotics - what was recommended to me was Lamberts Acidophilus extra 10. They have 10 billion live bacteria per tablet.

These tablets are what professionals use. Alot of my tablets are either Lamberts or Biocare. They are readily available via health professionals or the internet.

I was recommended these by a medical herbalist and nutritionist. Dont know how they compare with other brands.

Cozy


----------



## Cath34

Hi all, just a very quick one as I have had a manic day. IVIG went well yesterday, Dr G seemed to infuse it quite slowly this time!! He was over the moon fair play. I asked for bloods again, (just for the last time i'm not gonna stress about bloods) and my hcg had increased from 73 to 171 so he was delighted. I need another NK test (oh joy) in 2 weeks and also my 1st scan!!!!! Cant believe it.

Just to give you a heads up, BUPA wont pay for my IVIG!! They wanted to speak to Dr eskander to know why I needed it and then asked for a medical report. This meant having a consultation with him (charged) ( which consisted of him asking me my history of treatment, and writing it down in a letter to BUPA, all of 5 mins) He mentioned IVF and everything, so no hope at all. I will also get him to give me an invoice for tests for immune issues to try and send in to get something back but its not looking hopeful. I think it depends who you speak to at BUPA as to whether they authorise it or not!!!

Toffee- thankyou and yes you do all have to keep going as Dr G will get there in the end I am sure of it. I always knew he would, it just takes time to get the balance right. Hang in there everyone.


----------



## Sprinkles

Morning ladies,

Just rang my clinic to request tx and guess what........ its closed!!!!        

Will be on the doorstep tomorrow morning...


----------



## Cozy

Cath,

sounds like your numbers are doing very well. Things are looking very good.  

Its a shame BUPA wont pay for IVIg. I was hoping you would say that they would and then they would hopefully pay for mine.

Take care  

Cozy


----------



## lalaby123

yes Lamberts also do very good products, free from rubbish and i think its all vegan as well

Cath - great HCG numbers  never mind the IVIG I am sure the outcome will be worth it

Sprinkles, yes try St Mary's tomorrow, hopefully they will let you cycle next month

hi to all
xxx


----------



## omni

Hi everyone,

Gosh so many new posts. I am just going to write a quick one now as I have to go out soon but will post again later.

Probiotics - I checked back to see what I used. I got mine from the Nutricentre and they recommended those that are stored in the fridge.

I got Biocare's "Bio-Acidophilus Forte". It says it contains "24 Billion Viable Organisms". I remember it was quite expensive but I did not get thrush.

GREAT "doubling" Cath  

Omni xx


----------



## Han72

Hi all!

Hey Cath - fantastic numbers there hon!        Gutted about BUPA and IVIG but at the end of the day, surely the way you got pregnant should be irrelevant...? The fact is you're pregnant and in order to help that pregnancy progress, you need IVIG, shouldn't that be all that matters? Although I don't see why Eskander felt obliged to mention the IVF at all...  I hope that you can find a way around it hon    



Sprinkles said:


> Everythings dependent on something else it's a logistical nightmare.


TELL me about it!!!  The mantra of IVF treatment    I'm sorry you're not feeling well hon  What about taking ibuprofen hon, seeing as it's an anti-inflammatory medication, maybe it would contribute to the reduction of TNF...? Just a thought! Good luck in Greece lovey! 

The discussion about antibiotics and probiotics is fascinating, just wish I'd known all this stuff earlier! I mean I knew about probiotics but didn't realise the stuff I had from H&B was next to flipping useless  Actually, I should say, recent experience makes it obvious that it's useless (if you catch my drift!) but I just assumed that it was cos I hadn't started taking it early enough... Also I remember hearing about live yogurt being good for thrush but I never did figure out if you were sposed to eat it or sit in it...   

Love to all!

xxx


----------



## Newday

well I've bought some actimel and will eat live yogurt everyday for breakfast so hopefully this will be enough to stopn trhush.
Dawn


----------



## Peanuts

Hi girls
You've been a busy bunch chatting here!

Thanks again for the support girls, its finally pushed me to phone FGA and make an appt.  They could have squeezed me in this week, but was a bit too soon for me, so going down to London for an appt next Monday 12th.  Really hoping the tests will start to give me some answers.  

Any idea of hotels near the clinic?  As I think we'll head down to London the day before, as don't want to be too stressed flying down from Edinburgh that morning!

Cath - congrats on your BFP  thats fab news  .  Keeping everything crossed for you   

Take care and big hugs to all  
Dxx


----------



## Cozy

Peanuts,

I've stayed at the Melia White House a few times. Its about 15 min walk from the clinic and almost opp Great Portland St tube station. 

Its about a 20 min walk along Euston Rd from Euston train station, near Regents Park.

I've stayed in a few others but none were as convenient.

I'm sure others will come up with some different ones.

Glad to read you have made the appt. I'm sure you wont look back from there.

Cozy


----------



## Sprinkles

Hi Peanuts,

We've stayed in Premier Travel Inn at Wembley last time, but we drove down.  By all accounts its a good Travel Inn and tube is right outside hotel so getting into London was easy, just a few stops.  But not sure how this would fit with which airport you arrive at.

Havent stayed in central London for appointments but I'm sure some of the other ladies can help out.  Good luck with your appointment and hoping you get your answers.  DrG is lovely.


----------



## Cath34

Nix, i totally agree why does he have to mention IVF at all. The fact that i NEED IVIG to sustain a pregnancy is all that matters. I am still gonna try and claim back for some of the tests though.   

I have to say as well as Dr G, Choice has been marvellous in helping me to get my bfp. She gave me some sound advice regarding different drugs to take etc.... she really is knowledgable so Choice if your reading hunni, thank you so much again. YOU'RE A STAR  

Sarah - you too hon, your support has been invaluable and I hope to be the same for you during your next cycle.


----------



## Pinpin

Awww girls, i'm worried.... DH has developed flu symptoms over the past 36 hours and is now lying next to me on the sofa with his nose running, shivery, sore throat and sneezing. Not only am I due to have intralipids on wednesday and Ivig on Friday at Dr G but i'm also supposed to receive HIS blood as having LIT with Dr A on thursday. I am getting myself in a bit of a state as worried i might catch it and then Dr G would not give me the intralipids and ivig and I would still have to go ahead with my cycle as it's NHS....

Have some of you had a similar experience, has anyone received ivig/intralipids whilst being flu-ish?



Pinpin x


----------



## Red6

Dear ladies

I have just had my results back from Dr G and although I thought I would manage to decipher them myself with the aid of the book and past threads, I am still a bit confused.

They show that I have elevated CD3 cells prob due to hypothyroidism - does anyone know what the main treatment for this is. Do you think intralipids might possibly help this?

DH and I have a DQ alpha match - 0102 - cant quite work out what this means or what treatment necessary - lit, donor lit, dh lit.

Also some of the NK assay is below the normal range - I have no idea what this means either. I sound pretty clueless dont i 

Sorry for posting more boring results but if anyone has any ideas for me I would be very grateful. Will be having a phone consultation with Dr G shortly so I am sure he will have lots of sound advice.

Many thanks

*NK Assay*

50:1 11.6
25:1 3.9* (below range)
12.5 1.3* (below range)

CD3 86.8

NK Assay with intralipid

50:1 6.9
25:1 3.8

LAD negative
T cells Igm+ 1.0
T cells IgG+ 21.2
B cells Igm+ 22.4
B cells IgG+ 18.8

TNF 20.1
9.6

Dq Alpha - me - 0102, 0501
Dq Alpha - DH - 0102, 0303


----------



## sarahh

Pinpin, sorry hon can't help you.  Personally i don't think that Dr G would refuse to give the infusions to you as in fact the IVIG is meant to give you a boost health wise as its lots of antibodies which help fight infection, I think!!  

Red - Not sure about the CD3 but surely the hypothyroidism is treated by taking thyroxine - are you on this already?  

If you have a DQ Alpha match then it is best to have donor LIT (i.e. Greece) and your LAD result shows that you will need LIT (or this will be recommended to you anyway). 

Your NKs seem fine and below limit means that you don't have any problems (I think!). 

Also your TNF is ok too I believe so no Humira for you I don't think.  All in all, apart from the LAD your results look pretty good to me (hope I've not missed something!).  Hope that helps.  

Sarah x


----------



## Bibie

Hi girls,
hope everythings is ok with you,
for me, bad news, BFN again... 
I think that I'd already explained, I did 2 times LIT ( 3 weeks appart ) here in Belgium.
But this afternoon, my hematologist received the results of my bloodtest, and LAD is always negative... no trace of antibody...
She asked me the dose prescribed by Dr Gorgy, but I don't know...
She injected 40.000 lymphocytes / LIT. 
Do you know if these dose are correct? What are the dose in Greece/or London?
I'm a little bit lost, why didn't it work for me?? Is there a chance to have these antibodies after a third LIT, and with whitch dose? 
I'm really desesperated girls... I've a so long journey, without one pregnancy... ( 4 IVF + 3 FET, 8 IUI...)
Thanks in advance, and good luck to you !


----------



## Toffee Girl

Hi All

Just a quick question - can anyone recommend a good type of Resveratol and where to order it from?  Also, how do people feel about its side effects?  Do people feel it is really important to take it?  What does Dr G think about people taking it - anyone know? 

Bibie - sorry to hear your news of BFN.  I have to say both Dr T and Dr A both of whom I went to for LIT do not discuss the doses of what they inject in patients as far as I know, so can't help on that question.  Anyone else know more?

All the best everyone

Toffee Girl x


----------



## ells

Morning Ladies,

Sorry to hear of your BFN Bibi   .  I am afraid I cant answer your question I am sure one of the other ladies will know the answer though.

TG - hi hun, sorry I cant help I am sure someone will be a long in a mo and be able to answer your question.  Hope you are feeling okay.

Cath how are you?  When is your next blood test? What date is your scan?

Hope everyone else is okay?  

Can anyone help, we are seeing Dr G this Saturday for our follow up, and I wanted to email Dr G before hand to see if I could get my 5 mins with Dr Eskander for my BUPA claim and to get my hysteroscopy done.  Could someone let me have Dr G's email?  

Hope everyone has a good day.

Ells


----------



## lalaby123

Hi all quick one from me as have to dash

Ells, Dr Gorgy's email is [email protected] and [email protected] but its best you call as he doesn't always respond to his emails promptly. 

Bibie so sorry to hear of your BFN, you have been through a lot. I admire your strength and courage. I am sorry I don't know anything about LIT and LAD as mine was ok. I have read here that some of the girls needed 3 or more LITs to get their levels down. You can also post a question on the Immunology and Investigation board and hopefully get some answers. I am sure one of the girls here will soon be round to give you some info. 

love and luck to all
xxx


----------



## ells

Thanks Lalaby!


----------



## Bibie

Hi girls, thanks a lot for your answers,
I've also posted it in the immunology post, but no answer yet...
I've sent an e-mail to Dr Gorgy, I hope he will answer soon...


----------



## Han72

Hi all

Bibie hon - je suis vraiment désolée cherie    I'm afraid I cannot answer your question about LIT, but I really hope that your clinic will do better for you the next time around.  And I don't think that the negative LAD is the issue here...  If I recall correctly you had 4 eggs and they decided to convert your cycle to IUI?  Could it be that they did not give you a high enough dose of the stimulation drugs? Or perhaps the wrong stimulation drugs?  For example, I get very few eggs and of poor quality with GonalF or Puregon, but I get lots of good quality eggs with Menopur! But I need a minimum dose of 450iu/day.  Also, I don't think that 4 eggs is a true poor response, they could still have done IVF... but that is just my opinion!  I really hope that you can have a useful follow-up appointment so they can give you a better chance of success next time around!       

Lalaby hon - how's that heartburn now? I hope it's better 

Hi Ells - as Lalaby says, I really think you'd be better off ringing rather than mailing as I think he just doesn't have time to monitor his email as closely as he'd like.. good luck hon!   Ooh how was that curry by the way?  Did he use Levi Roots recipe by any chance   I love a bit of Levi Roots me! 

TG - I think someone posted a link to a resveratol online order site a few pages back...? Sorry can't remember who it was, memory like a sieve 

Hiya Red - good luck with your consult hon.  I don't know enough about the IVIG/Intralipids assay to comment but I think Gorgy is almost sure to recommend Donor LIT to try to get your LAD levels up... Nut the good news is your TNF levels are normal (yaaay!!!) so he probably won't recommend humira 

Pinpin - I've not heard of anyone being refused IVIG/Intralipids due to having a cold so hopefully you'll be able to go ahead, even if you do catch it!      Try and keep your distance tho cos you can do without being ill just now!

Love to all!

xxx


----------



## siheilwli

Girls, big hugs and hello from me. I'm lurking every now and then, but not posting much for my sanity at the moment!
Great news for me today - humira brought my TNF levels down after 2 shots - from 48.6 to 19, and IFN-g down from 31.1 to 10.2! I'm flippin over the moon... on to LIT and IVIG hopefully now. 
Anyone know when the LIT and IVIG should be timed? Am hoping for FET ET late January.
Cat
x


----------



## Red6

Thank you Sarah and Nix for your advice, I am very grateful for the help    

I am on thyroxine for the under active thyroid but was wondering if anyone has seen their CD3 cells go down after intralipids/ivig or whether they will just remain high forever. Donor lit sounds very daunting but will give the lit thread my full attention tonight. And I booked my phone consultation with Dr G for tuesday so fingers crossed.

Thanks again


----------



## Sprinkles

Pinpin ~ sorry DH is not so good and hope that you don’t catch it, sorry cant help on the question regarding IVIG hope it doesn’t hold anything up for you x

Bibie ~ sorry for your news hun, posted on LIT thread regarding your question but don’t know how much help it will be x

Toffee Girl ~ sorry not heard of resverterol x

Nixf01 ~ thanks for the info but unfortunately cant take ibuprofen due to LIT, but cold seems to have near enough disappeared now apart from I’ve lost my voice.  I love Levi Roots too.

Siheilwli ~ wow fantastic news on your TNF levels that’s fab!  Think you should be ok doing LIT now, and then IVIG nearer your cycle, good luck hun if you need any info about LIT there is a fab thread in immunology about it whether it be Dr Armstrong or Greece, alternatively I’ve just come back from my second lot in Greece so will help if I can x

Red6 ~ I too found the whole LIT thing daunting but found lots of support and information on the LIT thread or just ask if you have any questions hun.  I also too have high CD3 cells but have been told that through the mixture of humira, IVIG, intralipids and steroids these should come down.

Hi to everyone else hope you’re all ok.

Well good news I got seen at clinic on Monday was there at crack of dawn and managed to get scan and bloods done, and they’re referring me to another clinic as they’re not up and running yet so just waiting to find out where it will be.  Then jetted off to Athens for second round of LIT which went well, helped knowing what to expect this time.  To be honest the journey is more draining than the tx, but its done now and will retest in a few weeks see if its worked.

My colds just about gone but have lost my voice, but not complaining wouldn’t have it I guess if the humira hadn’t worked.

Off for an early night, shattered with all this jet setting!!!


----------



## Bibie

Nixf01 : thanks for your words in frensh! 
I had already a high stim : 300ui Puregon + 150 ui Menopur... and short protocol... How can we do better...?
But I've always good quality embryos... That, I can't understand... Why always failures..? 
So now, we are going to do an egg donation, but as you say... is it the solution... I'm completely lost!


----------



## Saffa77

Ladies

Hope you dont mind me crashing the board but my head is alllllllllllll over the place and dont know what to do.  Firstly I have really severe Endometriosis  and have 2 x IVF with own eggs and never made it to ET because I never had eggs.  then did 1 x Donor Egg cycle and it was BFN - Now I have been doing a lot of reading etc and have read that ladies with Endo (which is an immune issue) should go get immune tests done! So my next Donor cycle is scheduled for Mid-end January and have decided to book an appointment with Dr Gorgy just to get my mind at ease because  i keep thinking about what if i have high NK cells or something else..... I dont know anything about these tests.  Should I still just go along to this appointment and get them done and see what comes out of it?  I am due to go to IVI in Portugal for my next cycle and what if the doctor dosent believe in all these tests and possible medication if I have any issues?  Can you get them to agree to take these meds before you start IVF sooooo confusing.  Or do I just go ahead with my next cycle with no immune testing and if its a BFN again then go get the tests?

Soniax


----------



## Han72

Hi all

Sonia - it's a very personal choice and also depends on your financial situation but I really feel that it would be worth your while to get those immune tests done. If there really is an issue then chances are that your DE cycle would fail anyway. If your DE doc doesn't like immunes, well so what?? Just don't tell him, he doesn't need to know does he...?  

For example, I'm having tx here in France. My doc is a bit of a contradiction in that he clearly thinks there's SOMETHING in the whole immunes thing, but will only prescribe steroids/aspirin/clexane and certainly won't go out on a limb and send me for testing.. (So basically he's prescribing stuff without really knowing whether the underlying condition is present or not cos he won't do the tests - bit of a nonsense really but there you go!) And he won't touch LIT (I can see why but that's another story!)  IVIG or Intralipids. Furthermore he's reluctant to give me the steroids cos I take a seretide inhaler for my asthma (as if that's going to help me get preg   ) So I'm coming over to Gorgy for Intralipids and he's also happy to give me the steroids if my doc refuses to do so...  

I would say have an appointment with Gorgy and see what tests he suggests.  Also, maybe a bit more reading...? Have you already got Dr Beers "Is your body baby friendly" book? Also the SIRM (haveababy.com ) chat boards as well as this board and the immunes board on FF are very useful. Then you can make an informed decision on whether immune testing is right for you at this point or if you'd prefer to push on with another DE first.  It IS a lot to take in but if your DE isn't due until Jan next year, you still have a bit of time to look around before making a decision.

Oh and if you're not London based, I believe Care in Notts also does the tests...?  I could be wrong tho!

Good luck hon!   

Hey Bibie - I don't know, maybe a different balance of Menopur and Puregon might work (ie, more Menopur and less puregon? That's what works best for me anyway!) Or maybe you're one of those people who actually responds better on a lower dose (I saw a post from someone in that position recently, sorry can't remember who!)  But it is odd that you would get so few but good quality embies on such a high dose... And if there's nothing wrong with the quality of your own embryos then what is the point of moving to DE...?  Sorry if my questions offend you but I just don't understand the logic?? And it is true that there are sooo many different causes for poor response it is a real nightmare trying to work it out!  Sorry I can't be of more help hon 

Red - hope you can find some more info on the thyroid thing, have you tried using the search function on the site?  Sometimes it brings up loads of irrelevant stuff but it can be useful to find info 

Cat - great news on the TNFa levels!    Good luck with the nest step  

Hi Sprinkles - Glad you're feeling better hon!  I didn't know that about LIT and Ibuprofen... !

Love to all!

xxx

/links


----------



## Cath34

Saffa, I have sever endo too, frozen pelvis and kissing ovaries etc... Had 4 failed IVF's and then said enough is enough and went to gorgy for immunes. Best thing I ever did. I found I had v high NK'S which I thought. Also neg LAD. Anyway with immune treatment I am now pregnant through Dr Gorgy, he is a guru!!! I would say go for it, you've nothing to loose. Good luck


----------



## missmarple

Sorry to butt in, ladies, but I have a question for all Dr Gorgy patients. I am going to have a last ditch ICSI (I am 41, with a low AMH and high FSH) and am trying to select a good clinic. I don't want to go to the ARGC as I don't live in London and they won't allow me to have scans locally in Dorset. Can I ask you if Fertility Academy patienmst can have scans 'at home'? And secondly, how can I find out any success rates for him? Thank you for the help


----------



## Saffa77

Thanks ladies for your advice etc.  Have made an appointment with Dr G for the 26th October.  And yous right the doctor in Portugal does not need to know that I am drugs if i need any.....  I believe that having these tests done is about £1200-700 odd but how much would the drugs etc be.  I have heard that IVIG is expensive like £1200 is this true?? and is that per shot?  I just dont know what to do I have 2 weeks to think about all this and have also ordered the is your body baby friendly to read etc.  Just worried about cost of having to travel down there all the time if I need the drugs etc eeeeek, but want to get my mind at ease.  

Sx


----------



## ♥JJ1♥

IVIG is very expensive when I last had it April 08 it was about £1300 a dose
L x


----------



## Saffa77

Really eeeeek and what is IVIG for?  are there any alternatives you can use??  Am scared I am now getting into a whole other minefield by having these tests done!! if these results come back with something wrong does any wrong result mean you cant get pregnant at all without the medication?

Sx


----------



## sarahh

Just a quickie from me - Saffa - the IVIG is now £1350 per go with Dr G.  There is something called Intralipids which costs £350 and if you do decide to have the blood tests done then there is a test that you can have which shows whether your levels come down well with the intralipids.  The IVIG is commonly used for high NK cells.  The blood tests themselves are also costly, depending on what you decide to have tested it will probably be at least £700 and could be a lot more..... 

missmarple - you can have bloods done locally on the days that he does not want to do scans but I think he would be very reluctant to let you have the scans done locally as he decides what to do with your stimming drugs etc. depending on what he sees on the scan ( & of course the blood results).  I would say you are normally there every other day, possibly a gap of 2 days in between scans at the start of stimms (i.e. every 3rd day).  Hope that helps.  He really will tailor the cycle for you and I personally believe it is far more personal treatment than the ARGC, but that is just my personal opinion.

Hope everyone else is well.  

Sarah x


----------



## Maisie3

Hi

Sorry to crash in but just wanted a quick bit of advice - I am a (skint!) ARGC veteran and am looking to move on due to financial reasons but also because I do find it hard going there as its so impersonal.  Can anyone advise roughly how expensive Dr G is for a cycle - I usually have IVIG before transfer so at ARGC its around £9K - do I save much with Mr G is the big question for me.

Thanks

Maisie

xxx


----------



## missmarple

Thank you so much *sarah*, Mr Gorgy really sounds like an undiscovered (relatively!) gem. I shall try and get an appointment booked.


----------



## Saffa77

Thanks Sarahh!  I have made my appointment which is in 2 weeks time so will try finish the De Beers book before I go!!! EEEEEEk am scared now maybe shouldnt be delving into all this now!

But gut is telling me to get them done.  Am worried about the prices of the drugs tho - so expensive!!!  HOpe they dont find much wrong.  Is IVIG the only solution to high NK cells??

Sx


----------



## Pinpin

Hi everyone

Saffa - as Sarah said the alternative to IVIG is intralipids which Dr G offers as part of his immune protocol it is best however to do the test if your NK are raised to see if you respond better to intralipids or to IVIG. Some people seem to respond better to intralipids which can help you save a few £££

Maisie - I have not been to ARGC however so far our cycle has costs us £6k but that's only for immunes without the actual TX which we are having on the NHS. I hope someone who has had the full Tx with Dr G will come along and answer your question better.

Bibi - I hope you're ok and that you'll find the answers to all your questions soon  

Sarah & Sprinkles - how are you doing?

Cath - Have you had your scan yet?  I was sat at Dr G with Choice on Friday both having IVIG whilst she was on the phone to you. I hope your worries have vanished and you and beanie are doing well.

I hope everyone else is well. 

As for me, I'm having another scan tomorrow to see if follies have grown as the first 2 scans had shown 16 follies but were still too small for EC so crossing my fingers that they have and hoping for EC on Wednesday. I have now had my intralipid and IVIG and LIT last week. Now taking my prednisolone and clexane and   all of this will not be for nothing.

Love and luck to all

Pinpin x


----------



## Cath34

Thanks pinpin, I have calmed down now and have decided not to do my bhcg levels this week as I had planned!! I think I have been stressing myself out worrying that my scan will show nothing!! Choice gave me a stiff talking to and I feel better now. My scan is on Sat and i'm scared stiff!!!!

I hope you lovely follies have grown and EC will be weds as planned.

Hi to all, xx


----------



## ells

Hi Ladies,

How are we all?

Was anyone at Dr G's on Saturday morning at about 10.30 -11am.  There were at least 2 ladies having Ix. 

Omni, how are you feeling hun?  Hows that tum, growing nicely I hope?

Cath, not long till your scan hun, how exciting!  What time are you in for?

SarahH, hi hunni, how are you?

Sprinkles, are you off to Greece again hun?  Hope you have gotten over your cold.  Sending you lots and lots of luck for your levels!!!

PinPin, how are you feeling on this cycle?  I will PM you about your colitis etc later.

Choice, if you're reading, hope the bump is starting to grow now and that you are enjoying being pg.

TG, how are you sweetie?  I hope you got an answer to your question and that you have managed to sort it all out.

Nix, how are you?  

Hi to everyone else, sorry if I missed anyone off   .

I had a bit of a wobble yesterday, what if all this doesnt work   ?  We saw Dr G on Saturday morning and he was very positive.  He said that our DQ Alpha numbers are okay phew !  He said it was up to us if we wanted to have LIT or not, but DH without any prompting said 'no we need to throw everything at this'  so we are probably going to go to P Armstrong as Greece would just be a nightmare to sort out with work and everything else.  He told me that my NK cells 19 and 5 are very high, which is linked to my high TNF A levels (which is all a direct link to my crohns) so he has suggested that I have a go with IVIg and intralipids to try and knock these little blighters out.  He has also said that I will need Humira for the TNF A levels.  I am going to try and find out if I can get any of this cheaper from Europe.  Dr G gave me a private script with the doses etc on so I know what I need to get.  I will let you all know if I find somewhere that does it all cheaper.  I am going to ask my clinic if they would conisder doing the IVIg - they have been pretty good so far so I can but ask!  My DH has been very good though, i was very surprised that he was happy to give it all a go.  

Right gotta get on and finish my minutes!

Ells


----------



## Han72

Hi all!

just a quickie for Ells, wobbles are normal hon,    so it's great that your DH is being so supportive!  Just FYI I bought Humira over here in France the last time - it was over a thousand Euros. If it weren't for the fact that it needs to be kept cold, so it was a bit awkward I'd have ordered it from the UK, had it delivered to a relly over there and then come over to get it. Seriously the price of the humira over here was more than I would have paid for the medication and the return to the UK from Paris!

Have you seen the where to buy drugs cheaply thread...

http://www.fertilityfriends.co.uk/forum/index.php?topic=9821.0

Good luck hon!
xxx


----------



## ells

Thanks Nix. 

I have seen the cheap meds thread but I am going to Poland at the end of this month and I know that almost everything is cheaper over there so I was going to see if I could find out, order it and then go and get it.  I should be able to keep it cool.  I will try and find out if they would fed ex or DHL it over as it might be worth knowing for all us girlies in the same boat!  I cant believe you had to pay that much in France hun!  It is a very expensive business.

Thanks again hun, still bit wobbly
Ells


----------



## Jofie

Hi everyone,
I hope this hasn't been asked here before - I haven't had time to read back through all the messages.

I went to see Dr Gorgy today for day1 scan, and he gave me 10 vials of Fostimon, 10 of Merional and charged me £500 each for them. Is this a reasonable price, or should I be going elsewhere for the rest I'll need? Poor responder here so (hopefully) going to be needing a lot more. 

I used Menopur for my last cycle, but to be honest I can't remember how much they were either! (except it was eye-wateringly expensive from the Lister pharmacy I seem to recall).

Hope someone can help 
Jo.

Update: a bit of searching turned up a message with exactly the information I need http://www.fertilityfriends.co.uk/forum/index.php?topic=203386.msg3240202#msg3240202.

Which brings me to another question - does anyone know if Dr Gorgy will accept return of unused drugs, if I can get hold of them cheaper elsewhere?


----------



## Cath34

jofie, He did exactly the same with me and I was amazed at the price too. I have always been on menopur too but he likes to mix the 2 depending on your oestrogen levels everyday. Merionel is a refined version of menopur apparently. He will also refund what you dont actually use which is good as if you buy them from a chemist you cant return them I wouldnt think.

Ells wobbly is normal, I was off and on regularly.In fact I am probably worse now   My NK were 34 so 19 is nothing. IVIG brought mine down to 11.4 with 2 infusions so i'm sure either ivig or intralipids will do the same for you. If I can get pregnant with those levels you all can.

Come on ladies bring on the bfp's!!!!!!!!!!!!


----------



## Jofie

Thanks very much for the info, Cath! I'll have to play it by ear - sounds like it's six of one, half a dozen of the other. £50 and £29 per vial is a big diff...


----------



## bunagirl

Hi ladies can I join you.  Have been following the thread over the last couple of months as I have been to see the infamous Dr Gorgy for immune tests following negative IVF cycles and one miscarriage earlier this year, having used donor eggs with IM in spain.
Decided to get some immune testing done before my next tx (we have two grade 9’s FE’s).
These were my results;
Nk Assay,                                      Result
50:1                                            29.0
25:1                    17.2
12.5:1                      7.6
IgG conc 12.5:1 50:1                    17.9
IgG conc 12.5 25:1              11.9
IgG conc 6.25 50:1              19.5
IgG conc 6.25 25:1                    8.5
CD3                    73.5
CD19                  4.7
CD56                  20.5
LAD
Flowcymetry              Negative
T-cells IgM              1.0
T-cells IgG              1.0
B-cells IgM                        17.6
B-cells IgG              2.0
NK assay w/Intralipid
50:1                        18.7
25:1                        11.7
TH1:TH2
TNF-a:IL-10 (CD3+CD4+)        23.9
IFN-g-IL-10 (CD3+CD4+)          7.0
DQ Alpha                                0102, 0401    (mine)
DQ Alpha                0201, 0303    (DH)                
What I was wondering was if anyone had used Paul Armstrong in London for LIT.  We are not planning to got to Athens for LIT as I can use DH’s blood, and the logistics of having time of work etc would be just too stressful .  Does Paul Armstrong do the LIT and then retest again before FET or do we just go ahead with transfer and test again if a BFP occurs.  Dr Gorgy will also be prescribing me IVIG, Clexane and steroids amongst other stuff, cant remember everything that he said, but sounds like it is normal procedure for a lot of women.  
What I would really like to know is if anyone has had a tx using donor eggs and used Paul Armstrong for LIT.  Can anyone explain step by step their tx to me?  I really hope so as I am only just getting my head around all this immunology stuff!  
Good luck to you all on this very, very difficult and challenging journey.
Much love Bunagirl.


----------



## Sprinkles

Evening ladies

hi and welcome Saffa77, Maisie3, miss marple, Jofie and bunagirl

Cath34 ~ hope you're ok and good luck for scan x

Pinpin ~ fingers crossed scan ok and you're all set for Wednesday EC   for you x

Ells ~ done my second trip to Greece, hopefully wont have to go again testing in few weeks to see if its worked.  Hope you're feeling a little better now.  Good luck with asking clinic for IVIG.  I got my humira from healthcare at home, in england, which was really reasonable (well as reasonable as any of this is!!  ), £750.  Dont know if thats any help.

Hi to everyone else hope you're all ok.

Well not much from me, just waiting to find out which clinic I've been referred to as mine still not up and running after refurb, and need to speak to DrG to see if I need to take any more humira now I have an idea on when EC might be.  Will try tomorrow.

Love to all xxx


----------



## Red6

Hi everyone,

Sprinkles  - will Dr G do the retesting for you now you have had your LIT?

Ells - I am pretty much with you on the wobbles, hun. Had my follow up phone appointment this am and dont feel all that positive  

Ten minutes on the phone, told to try LIT and that was about it. Very little advice about anything else and just feeling very low right now. Dont know which way to turn, especially as I was at my local clinic yesterday and they said they would not entertain any "controversial" treatments - their words not mine  

xxxx


----------



## Saffa77

bunagirl - may I ask how much you have just paid for all those tests and does he suggest which one one should get or does he just do them all?  I am about to see him in 2 weeks time so was just wondering.

Sx


----------



## bunagirl

Hey Saffa 77,  when I went to see Dr G I told him about all of my IVF history, including any op's FSH levels and any other tests that I had had.  He will then advise you as to the tests you probably should have, its entirely up to you what you decide to do.  The tests that I have listed in my previous post (including my Thyroid test which I haven't mentioned) came to £1,250 in total .  For me, I'm glad I did them, as it has shown a few issues that need addressing and I am going to get my levels to where they should be before I continue with any tx.  Am absolutely dreading how much all this is going to cost as I need IVIG as well as LIT 

Best of luck to you Saffa77

Much love Bunagirl.


----------



## Angels4Me

there are some doctors that use antibiotics for nk cells as possible infections are thought to cause high killer cells. Antibiotics are lot cheaper than ivig. Chlamydia can go undected with UK tests and can cause high nk cells. Im no expert but im v.interested in this approach.


----------



## Peanuts

Hi girls 

Back from London last night after our 1st appt with DrG.  What a nice man he is, I really thought he listened to our history and came up with some options for testing and treatments that made sense.  At my last appt with my NHS consultant he shrugged his shoulders, told me I was a mystery and should have a baby by now  , I could have punched him!

Got lots of blood taken for immune tests, so will wait to see what comes back and see if we get any answers.  Was feeling a bit off colour yesterday and have now got a tummy upset - do you think that would affect the results of the tests, if my body was fighting some bug?

Think DH is a bit overwhelmed by all the tests and treatment options, really doesn't like the idea of IVIG or LIT, etc.  But we'll cross that bridge if and when we come to it.

Saffa - as bunagirl has said DrG goes through your txt history, tests, etc and then discusses the additional tests he does.  I found that he wasn't just ticking all the boxes on the test list, but was just testing me for what he felt necessary.  It came to a total of £1350 for the blood tests and his consultation fee of £120  .  It sounds a lot I know, but I'm just at the point now where I need some answers before deciding to have a last shot at this or give up.  I live outside Edinburgh, so asked him if I would need to go to London for the txt - he said he would prefer that, but could also work with a local clinic if that's what i preferred.  If I came to London it would only have to be the last 7-10 days of txt, rather than the whole time.

Red - so sorry you're having the wobbles    My current clinic are the same about 'controversial txts' - but then as one of the other girls said, they don't have to know do they...  Sending you big hugs 

Missmarple - as I said to Saffa, DrG said he would allow local scans for the first few during txt, but then would prefer you to go to London for the last week or so - during stimms I'm assuming.  Hope you get an appt soon, and you can get more detail out of him. 

Big hugs to Ells, Sprinkles, Cath, Pinpin, Jofie, Maisie, Sarahh, Nix and anyone else I've missed
 
Dxx


----------



## missmarple

Thanks peanuts - goodness I am moaning about my journey to London and it is only 2 hors by train - you have a much worse time of it. Will you take a hotel room there for a week or so?


----------



## Ourturn

Hi everyone 
I'll be seeing Dr G in November to have all my immunes checked. We know I have immunes issues as I have raised uterine nk cells. Sadly prednisone and heparin did not save my most recent pregnancy. 
Luckily Dr G's partner is bupa registered so I will seen him via his partner and my private healthcare will pay for the tests and consultation (but not treatment) 
Because I live miles away, will I be able to get lit/ivig/via healthcare at home if I need it? 
We may be getting a final free nhs cycle. If this is the case should I tell my consultant? He allows the steroids as they were recommended by an nhs doc (Dr Quenby Liverpool) BUT told us not to waste money on immune testsing...sigh!
Thanks 
Anna x


----------



## Saffa77

Hi ladies

Sorry another question as I have been reading the is your body baby friendly book and almost see that with almost every treamtent that it mentions also having to have IVIg - what If i am not keen on this IVIg especially due to the cost etc - are they other options one could use?  Am i wasting my time having these tests done if I know that i wont be keen to use this IVIg?  Also has anyone ever had these tests done and have come back with everything being normal?  Also if my results were meant to come back borderline what happens then?

Thanks for all your advice.

Just lots to take it at the mo and want to be ready before my appointment so I know what we talking about etc if you know what I mean.

Hope you all well.

Sonia


----------



## lalaby123

Hello ladies sorry i have been out of touch

Cath - how are you doing? hope pregnancy is progressing well and you are feeling good

Choice - if you are still reading hope you are well and baby growing fast

Pinpin - good luck with those follies, hope you get some lovely eggs and i am sure the immune treatment will help things  along

Ells - hope you find the drugs cheaper elsewhere, please come back and let us know....good luck with the LIT and Humira, lets knock those evil TNFs on their heads

Maisie- I don't know if you have got your answer, but from what i know IVF alone with Dr G is much cheaper than ARGC. The cost of immune treatment i guess would be quite similar. 

Bunagirl - Good luck with your immune journey - hope it will make the difference for you

Peanuts - Good luck with your blood results - i hope they will shine some light 

Saffa - Intralipid is a new alternative to IVIG but it depends how well you respond to it whether Dr G decides to use that or IVIG. The cost is £350 instead of £1350! so a big difference. 

Sobroody - It depends on the attitude of your clinic whether you tell them about immune therapy or not...if you think they are closed minded then its best not to tell them - for LIT you have to go to London or Greece i am afraid as i don't think anywhere else offers it

As for me ladies, i am expecting to start my first IVF cycle next week if my period shows up which i am sure it will given . This cycle we have tried naturally with immune treatment (clexane, prednisolone and intralipid). I asked Dr Gorgy what he suggests for my IVF cycle...he had first suggested intralipid before ET and then IVIG if i get pregnant but when I told him that the immune treatment so far has caused a flare up of an old infection, he said i may be better off with TWO IVIG between day 6 and 10 of stimulation.....this was a shock to my system as i had prepared myself for another intralipid but the cost of two IVIGs so close is HUGE compared to one intralipid and i think it would put too much stress on me mentally for the IVF to work that it probably won't work if you know what i mean....has anyone got any advice why two IVIGs so close together?? 

Also another question is will Dr G mind if i have mine intralipid/IVIG through Health Care at Home?? my clinic (Care Manchester) have been so open to supporting my immune treatment and are willing to arrange for the Intralipid/IVIG which would be much more convenient than going down to London to having them done. 

love to all
xxx


----------



## Ourturn

lalaby...hope I don't need lit then. Really hoping that all I need is to take steroids earlier in my cycle at a higher dose...knowing my luck I will need the works! 

What is LIT? Have googled it and can't find it (just started reading my 'is your body baby friendly') so excuse my ignorance

Anna x


----------



## niccad

Hi - I haven't posted for ages but have been lurking in the background. Suddenly I'm feeling really rushed and am having a panic about timing. Finally got out LAD result back which are 'weak positive' which DrG says means we'll need LIT. We didn't have the DQ alpha tests done as I stupidly just assumed we'd be fine (Duh!!). Anyhow my AF is due to arrive on 23rd for a natural FET cycle & I'm panicing about timing to have LIT done before. Can anyone answer how quickly the HIV, hep B&C, etc tests come back for DH from DrG? We are having the tests done next Tuesday. Also - how long before ET are you supposed to have LIT? 
sorry for the bombarding of questions - looks like I'll have to go to Dr Armstrong without knowing if we need donor or DH blood.... I really don't konw how I've run out of time - guess I was just naive thinking the results would come back fine. Would anyone in my position with a weak positive result just not bother having LIT?

Any help would be really appreciated, especially as I've not been posting... 
Thanks
Nic x

(pinpin - how did you get on today?)


----------



## lalaby123

sobroody -  If you have elevated NK's which most of us with unexplained/miscarriages/failed IVFs do then you will be prescribed aspirin, clexane, prednisolone along with intralipid and or IVIG. It all sounds very scary at first but it really isn't once you get your head around it. I am on my first month of immune treatment and so far so good.


----------



## Han72

Hey lalaby!  Could you please advise, what's the link between miscarriages and having the blocking antibodies...?

Nic hon - really sorry but I can't advise re timing  I hope it works out ok tho!   

xxx


----------



## Cozy

Niccad,

if Dr G says you will need LIT, then I think you will need LIT. I have had miscarriages and I need LIT. 

If you go to Athens, you have 2 lots, 4 weeks apart and then test to see if it has worked. If you go to London you have 1 lot and he doesnt test you, you have to arrange that yourself. Athens will do LIT 2 weeks apart if you are pushed for time, but they prefer to do 4 weeks apart.

Once you have had LIT you cannot take steroids for 4 weeks, but can have some other drugs like Humira, if reqd, one week after.

LIT is thought to be in your system for 6-9 months. If you have donor LIT you have a better chance of it working - according to Dr Tsagaris.

I hope you manage to fit it in before your FET

Cozy


----------



## Cath34

Lalaby, I always have 2 IVIG's, what are you NKS like? In fact on my fresh cycle with Dr G I also added Intralipids too!!! I know the cost is outrageous but I found it worth it as I hecked my levels afterwards and mine had dropped from 34% to 11.4% so I was sooooo happy. I have since had 1 IVIG for my frozen and 1 since my + preg test and he wants me to have another at HB scan!!!!!!!! I am trying to claim it on BUPA but they are delving a bit too much. We have told them that I need it to sustain the pregnancy which is true but I think treatment for pregnancy is limited with BUPA!!!!! They haven't got back to me yet but Im guessing its bad news but you could still try?

Nix- My undertanding of LAD is that when you conceive yourbody needs to produce blocking antibodies around the embryo in order to stop anything from destroying it ie NK cells. If you have neg LAD it means you are not producing enough blocking antibodies to sustain the pregnancy. The theory was to only test this in people who have had recurrent misscarriages but now Dr G and jane reed (co author of is your body baby friendly) have agreed to test everyone as you could have miscarried and not known it being soooo early. Mine was weak positive but my levels shows I still needed LIT and went to Greece for Donor Lit. My levels went from 24 to 87.5!!!!! V good result.
I hope that gives you some info?


----------



## Cozy

Forgot to add.

If you do decide to go to Athens for LIT, they only do it every 2 weeks.

Next dates are 20th Oct, 3rd Nov, 17th Nov

Cozy


----------



## Pinpin

Hi Everyone,

Nic - as you know i had my LIT with Dr Armstrong as pushed for time like you and the timing of it was to have it on day 6-7 of stimms so for an FET i'd imagine day 6-7 of your cycle. As your AF is due on 23/10 i don't think that will give you enough time realistically to get to lots with Dr T in Greece so you'd have to settle for Dr A if you want to have LIT. I am not sure what he is like with not having the DQ alpha match results though you would need to check this with Dr G. With regards to the HIV, HepB&C and HTLV1/2 and Syphillis for your DH and plus another few for you you can have them done privately next door to Dr G and they would be ready on time I am sure. We had ours done at our GP and they took 10 days to come back but we then realised they had forgotten to do the HTVL test and had to do that next door to Dr G and got the results within 3-4 days.
When I asked Dr G and Dr A about taking prednisolone they said it was fine to take it so I hope this is right  

As for me I had EC today and got 12 eggs, now waiting for the call tomorrow to find out how many fertilise...

Love to all
Pinpin x


----------



## lalaby123

Cath - thanks for that...my NK assay was 24 but the NK cells themselves two were ok and two were BELOW range so i am a bit apprehensive about having IVIG at all let alone having two lots....i have read elsewhere that ARGC does not give IVIG to those who have some low NKs...any thoughts on this

Nix & Niccad- Cath has explained LAD well....My LAD came back positive and my levels were very high. Dr G said its because i have been pregnant before.....hopefully you won't need it either but if you do the treatment seems to work for most girls so don't worry. 

Pinpin - great news re 12 eggs....well done ovaries  lets hope you get some lovely embies


Does anyone know if having very high LAD levels (in the 90s) indicates that one has been pregnant several times (and subsequently miscarried)


----------



## Saffa77

Hi ladies

Oh my gosh you ladies are all immune gurus!!!! it sounds so scary to me,  having to deal with all my endometrisosis issues and now maybe immune issues eeeeeeek dont know if my head can take all this in!!!  Cath you are on so many meds (with your endo too) so im thinking thats  what i will need to and hear you speak about LIT in athens etc oh my gosh how much does this all cost! flights timing etc etc I am scared about this IVIg and LIT as not keen on that at all hope doctor has got alternatives for me!!! Im scared!

Sx


----------



## positivelyhopeful

Hi ladies,

I have posted on the immunes board a few times and have been following this thread for a while. I'm so pleased to hear a couple of you are preggers  and others are getting on well with your treatments  You are all so wise and I am hoping you can help with my results. Me and DH think we've worked it out by reading your posts but to be honest it's all a bit  lol

We are booked to see Dr G this Saturday for our follow up cons so really looking forward to that but would like the heads up before hand 

NK Assay (%killed) Panel

50:129.7
25:1 25.4
12.2:1 *20.6
IgG conc 12.5 50:1** 20.2
IgG conc 12.5 25:1** 12.8
IgG conc 6.25 50:1** 22.4
IgG conc 6.25 25:1** 16.5
%CD3 *85.6
%CD19 7.8
%CD56 8.2
%CD19+ cells, CD5+ 5.1

NK Assay w/ Intralipid

50:1 w/intralipid 1.5 mg/ml 13.7
25:1 w/intralipid 1.5 mg/ml 11.6

TH1:TH2 intracellular cytokine ratios

TNF-a:IL-10 (CD3+CD4+) 17.0
IFN-g:IL-10 (CD£+CD4+) 6.1

Leukocyte Antibody Detection

Flowcytometry NEGATIVE

[T-cells] IgM+ 6.9
[T-cells] IgG+ 18.2
[B-cells] IgM+ 12.2
[B-cells] IgG+ 40.3


----------



## positivelyhopeful

Sorry ladies pressed wrong buttun and posted before I'd finished,


We think that I will need Intralipids as they work best for me and also LIT?? Me and DH do not share any DQ alpha numbers so think we can use him and not a donor??

I am confussed about LAD as I have negative LAD but have been pregnant 3 times, the last time in April I lost twins    From a few things that have been written I should have positive LAD as I have been pregnant before. I have m/c'd twice around 11 weeks and once at 8 weeks. Why then I wonder have I got negative LAD??

Thanks for your ears and any help, Good luck all

Chaz x x


----------



## positivelyhopeful

Sorry first result NK Assay is

50:1      29.7

C x


----------



## Ourturn

Lalaby - thanks for the info, I have miscarried 7 times   so hoping it is a case of high nkcells, but the tests will tell me more. 

I am booked in to see him 16th Nov. Can't go any sooner as I have to wait for the steroids to be out of my system so I don't get inaccurate blood test results. 

Pinpin 12 eggs is amazing! 

Can't help with questions yet as I know very little about immunes 

Anna x


----------



## lalaby123

Hi chazwoz
sorry I must hav misled u I guess having been pregnant doesn't always lead to positive Lad I must hav misunderstood dr g 
as u said your results show high Nk activity which seems to response better to intralipid though dr g may still prescribe a combination as well ad LIT for your negative LAD 
luckily your Tnf is ok so no humira 
he will most likely prescribe u aspirin clexane and prednisolone as well 
good luck


----------



## sarahh

Chazwoz - your NK 50:1 is high at 29.7 so I expect you will have prednisolone recommended, it seems that intralipids works well for you so that is the cheaper alternative to IVIG but i suspect that Dr G will still want to give you at least one IVIG with your quite high level. 

Your LAD is also low so I suspect LIT will be recommended for you.  

Your TNF-alpha is within the limits I think so no Humira for you.   

Did you have your MTHFR tested or your DQ Alpha numbers?  

Lalaby I should think LAD numbers in the 90's would almost certainly indicate several pregnancies / miscarriages.   I also had two IVIG and one intralipids last cycle.  

Saffa hon, there are not really any alternatives to LIT but you don't have to have it of course, it is your choice.  And the alternative to IVIG is Intralipids but if your results show it doesn't work for you then there is not much point in having it.....  As for having the tests done and not coming back with any issues all I can say is some are luckier than others but most on here seem to have some issues - but then I guess that is why we are on here / seeking out immune experts such as Dr G searching for answers as we do have "issues" with getting pregnant or sustaining a pregnancy.  

Pinpin - great news on the eggs hon, take care, rest up and   for great fertilisation & some lovely embies for you.   Did you have EC at LWC? 

Niccad - what are your LAD levels?  If you haven't got DQ Alpha numbers then you won't know whether you have a match / partial match with your other half, however, if you have a weak positive then clearly your body has produced some blocking antibodies before.  I assume you have been pg before? 

Sobroody - LIT is lymphocyte immunisation therapy - basically white blood cells are injected under the skin / infused into your system which is meant to provoke your body into producing blocking antibodies - it is these that are meant to help protect an embryo.  I think this is right!! There is a whole thread on the immunology thread. 

Cath - glad to see you posted on here - sent you a txt earlier and was beginning to worry that you were not ok!   

As for me, we are off to apparently the top andrologist in London nxt week to see if we can do anything else to help with DH's sperm.  May get another test done whilst we are there to see if there have been any improvements since the last cycle!  What is another £100 or so eh?! 

Sarah x


----------



## sarahh

Chaz - I have also been pg before and my LAD was negative and after my last cycle when I had a biochem when my LAD should have started rising it didn't.  I guess this is the problem with some of us - perhaps with your history & low LAD numbers then donor LIT would be a better option for you - just out of interest what are your DQ alpha numbers?  

Sarah x


----------



## Cozy

Hi,

I am no expert when it comes to this immune stuff, but rather than just focusing on the LAD positive or negative, is it not the (Bcells) IgG+ that says whether we need LIT or not?  

My (Bcells) IgG+ are 24.9 and I was told they need to be 50 or above, so I need LIT. My flowcytometry is negative.

I have been pregnant several times and my levels are low, so I'm not sure how the neg/pos corresponds.

Cozy


----------



## lalaby123

yes as Cozy says its the IgG levels that determines if you need LIT or not....

Sprinkle - just a quickie to say that I am so far very happy with Care and they are very open to supporting Dr Gorgy's immune protocol in anyway they can (obviously cost isn't covered by NHS but they are happy to prescribe the drugs and even arrange for IVIG etc) so perhaps you want to ask NhS to refer you to Care rather than MFS who i don't think is as immune friendly.....

hi to everyone else, must do some work now


----------



## niccad

Thank you Cath34 and everyone else for your advice re LAD... I'm just about to call Dr A to get a LIT sorted out & we're seeing DrG on Tuesday to get DH blood tests done. My levels are:
T cells IgM+   1
T cells IgG+   34.8
B cells IgM+   48
B cells IgG+   33.8

I have had no m/c or pg so could be the weak positive be a result of my recent failed IVF perhaps? DrG said to get LIT on the phone but I haven't discussed it with him face to face. No time to go to Greece & looks like i'll be taking steroids at the same time. This is all so confusing so I really appreciate the answers you've all given... I'm still unsure whether I should really do LIT but I'm going to follow DrG advice (although I haven't on the humira side... but will do if this FET doesn't work).... I wish I'd had DQalpha test at the same time - DUH!  

Pinpin - congrats again on the 12 eggs

Morning to everyone else..
Nic x


----------



## positivelyhopeful

Morning ladies,

Thank you so much for your replies,

Lalaby and Sarah I'm glad you also thought intralipids, so much cheaper, a little silver lining round my cloud! lol Why would I not just have intralipids and would have IVIG to as that doesn't seem to do much at all for me?
I did have MTHFR tested but Dr G's secretary forgot to send those results so I'll find them out on Saturday. Our DQ Alpha numbers are Me 0101, 0505 DH 0201, 0301. Do you think I'll need donor LIT?

We have been thinking about LIT treatment and have seen alot of ladies go to Athens for it. Does it work out cheaper to go there, ie flights treatment etc as a pose to Paul Armstrong? Have any of you used Paul Armstrong?

Saffa I'm a bit scared to but lets hope all this means we'll all be holding our Babbie's in our arms soon 

Sarah I hope your appt goes well next week 

Cozy my [Bcells] IgG+ are 40.3 so not far off 50, mind you if there not over 50 as they should be, I don't suppose it matters how far off 50 they are!

Pinpin hope today brings good news on your fertilisation 

Thanks everyone

Chaz x


----------



## Cozy

Chazwoz,

its a personal choice as to whether to have LIT in London or Athens. I was open to either when I 1st started the LIT journey but after reading peoples post, reading up about it and speaking to Dr Gorgy I decided Athens was the better option for me.

I chose this because Dr Tsagaris in Athens does 2 lots of LIT 2 weeks apart and then you have a LAD retest 4 weeks after that. He follows the Dr Beer protocol.

Dr Armstrong in London only does one lot of LIT and does not retest, so you dont know if it has worked or not. You would have to arrange your own retest.

I believe the cost of LIT with Dr A is £850 plus a consulation fee and with Dr T if you use your husband it is €500 or donor is €600. Dr T says you get a better response if you use a donor and it is actually easier to use donor LIT.

You then of course have to add on airfares. if you book in advance the airfares arent that expensive and in my opinion worth any difference in cost. I go on my own to make it more cost effective and its an easy journey, especially if you live near Luton/Stansted/Heathrow or Gatwick.

On the negative side. Dr T can be a pain in the   to get hold of and make an appt. He does reply eventually but not as quick as we would like. One way around that is to get someone to make the appt for you when they are there.

Dr T does LIT every other Tuesday. i.e 20th Oct/3rd Nov/17th Nov

good luck with whatever you decide to do

Cozy


----------



## missmarple

Sorry to butt in with another question and this may be a silly one -

I don't have any immune problems and am using a gestational surrogae. I know Dr G allows this.  Would you still go to him if you had no immune problems - or would you go somewhere else?


----------



## deegirl

SoBroody1 - You  had mentioned that your appointment with Dr is on 17 Nov and can't be any sooner because you have to wait until steroids are out of your system.  How long does it take for them to leave your system.  I have an appointment on 2nd Nov and was taking steroids until 6th Aug. 

Thanks....Dee


----------



## Ourturn

Dee, someone here told me it takes 6 weeks, so you are fine 
Anna


----------



## Pinpin

Deegirl just to echo sobroody I was told the same 6 weeks as I was also on steroids before I had immune testing and had to wait

Missmarple - Dr G certainly is an immune guru and he has worked at ARGC for quite a few years before opening his own clinic and has a good reputation amongst all the girls on here. I don't know if this helps but good luck in making up your mind.

As for me got the call today to say that 10 out of our 12 eggs have fertilised! Someone asked if I had it done at LWC but no it is an NHS cycle that I do in parallel of immunes with Dr G embryos are done at The Bridge. At the moment booked for day 3 on saturday but they will see if they can take some to blasts.
  

I hope everyone else is ok 

Pinpin x


----------



## Cath34

Excellent news on your fertilisation pinpin. Hope they make it to blast. Best of luck  

missmarple- I have cycled elsewhere as well as with Dr G and I would definitely go to him regardless of immunes or not as he is very knowedgable and very thorough indeed, the best consultant Ive ever had. Good luck


----------



## lalaby123

Pinpin that is excellent  news 10 fertilised wooo hoooo      you will have plenty of leftovers for the freezer ;-))


----------



## missmarple

Thank you so much Cath and Pinpin, that is very useful  He was extremely nice and knowledgeable on the phone when I talked to him. I was impressed I even got to speak to him on a random phone call, usually the doctors are keping their heads down behind the nurses!


----------



## ells

Yey Pinpin, thats fab hunni         . Sending them lots of growing vibes and a dividing dance [fly]            [/fly] .

Hope everyone is okay. Will pop on later as really need to hit the sack!! Nightie night all.

Ells


----------



## Sprinkles

Hey ladies hope you are all well

Pinpin ~ excellent news hun, good luck for tomorrow if you end up going in tomorrow but also fingers crossed for blasts  

Sarahh ~ good luck with your appointment next week, hope you get some answers x

Lalaby ~ thanks for the advice on Care, how long did it take for them to get in touch after you were referred from StM, do they call you or send a letter?  Its been nearly two weeks now since I had baseline scan and bloods at StMs and they said should hear something within 3 weeks but as usual am getting a little impatient as just want to know who/where I am going.

Am due to test LAD again after LIT in a couple of weeks see if thats worked, and then hopefully should know the protocol and be prescribed what I need for then.  Want to get going now.......


----------



## lalaby123

Sprinkles - if i remember correctly i heard within two weeks, what i did was tell St Mary's that i preferred to be referred to Care, then got in touch with Care and the lady there was so helpful she told me how the system works and that every friday they get a list from St mary's with the names of the referrals so on the monday i contacted Care and they had my name.....St Mary's was slow and needed to be chased to send the paperwork to Care so if you have waited 3 weeks i suggest you give them a nudge.....good luck with the LIT xxx


----------



## deegirl

Sobroody and Pippin, thanks for the info, that's reassuring.  Pippin great news on your fertilisation results, well done  .  Will update after 2nd Nov when Dr G has a look at my complicated goings on!  
Dee


----------



## Peanuts

Morning girls

Hope you're all well on this bright and sunny morning - well here in Edinburgh anyway!  

I think I'm slowly getting to grips with this immune stuff after reading all your posts, although I think I'll still need your help interpreting my results when they come through!  How long does it usually take for them all to come - I did ask DrG, but was trying to remember so much of what he said I think I missed that bit!   Should I phone and chase his secretary or will she send them out automatically?

PinPin - congrats on your fab fertilisation rate! Keeping fingers crossed for blasts, and good luck for ET     

Saffa - I know what you mean about being scared - there's so much to take in and this is a whole new ball game.  Let see what your results come back with and then at least you know what we're panicking over!!   

Sobroody - sorry to hear about your losses hun  , hoping that tests in November can shed some light on whats been going on  

Sarahh - good luck with your sperm appt, hope the Dr is able to help your DH.  All these extra £100 seem to have a way of adding up though!!

Chozwoz - good luck with your appt with DrG today,  hope he agrees with the girls!!  Hoping you'll come out of the appt with a way forward on your journey  

Hello and hugs to deegirl, ells, lalaby, missmarple, cath, cozy, niccad  

Take care
Dxx


----------



## Sprinkles

Hi Peanuts, results tend to take 10 days to 2 weeks depending on what tests you had.  You need to phone to get them as they arent sent out automatically, if you can get near a fax machine I've had mine faxed a couple of times.  Good luck x


----------



## Diane72

Hello All,

Has anyone done a full treatment cycle with Dr. Gorgy? 

If so does he do daily monitoring during stimulation and where does he do EC/ET?

Diane


----------



## Pinpin

Hi everyone,

Cath, Lalaby, Missmarple, Sprinkles, Ells, Dee, Niccad and Peanuts thank you for our good wishes  

Peanuts - sprinkle said it right 10 days to get results and you need to get Dr G secretary to fax them over to you. Good luck, I hope the results bring you the answers you need to get your BFP

Sprinkle - good luck with the LAD restest I   for a generous positive for you. Have you decided what to do with your second lot of humira yet? I hope your cycle starts very soon

Ells - i hope you're feeling fine this weekend and good luck in your quest to obtain the prescription from GO  

Lalaby - how are you doing hun? where abouts are you in the cycle now? I hope the indigestion have vanished and you're feeling great.

Diane - sorry I have not done a FULL cycle with Dr G only the immune bit which i am doing at the moment. Hopefully someone who has done a full one will be along to answer you shortly.

As for me, well the embryologist called this am to say that they want to take our embryos to blasts as all 10 of them have made it to today: we have 5 top grade, 2 more average and the last little 3 still dividing but a lot more slowly (bless). 
So now going in for ET on Monday...

Lots of love
Pinpin xx


----------



## lalaby123

Pinpin - you've got some embryo factory going on there!! you might want to sell some of the spare ones to us lot here in the future ....that is great news and good luck on ET on Monday. It really sounds very promising all those good quality embryos. My heartburn has disappeared thanks to switching to enteric coated aspirin thanks for asking 

As for me ladies, I know i am only trying naturally this cycle, but because i have had the immune treatment this month and because i am due to start IVF if I am not pregnant this month, I am an absolute bag of nerves and really quite horrible to be around      I am so jumpy and so irritable as my period is due tomorrow or Monday and I was soooooooo hoping to be pregnant with the help of immune treatment but deep down i know I am not as I don't have the symptoms that i usually get when I think i am pregnant for a brief few days before the evil NK cells get attacking. Plus when away in Turkey last weekend (for a cheeky break) I don't know what possessed me to go down a waterslide 7 days past ovulation not once, not twice but THREE times. Afterwards I felt a sinking/dropping sensation in my womb which kept repeating rest of the day which was probably the embie coming off.......

Dr Gorgy called me yesterday bless him as I wasn't happy about his change of plan to 2 x IVIG for my IVF cycle and we settled on 1 x IVIG and 1 x Intralipid between day 6-10 of stimms. I am hopefully going to do it at home through HealthCare at Home. 

Anyway if period comes tomorrow or Monday I will be starting my first IVF on the short protocol on day 2 of cycle. I think i can already feel the sensations down below and it will show its face on time as per every month for the last bloody 3 years. 

I am going to create a poll for side effects of immune treatment and will ask you all to participate shortly.


----------



## lalaby123

here's the poll ladies, please participate and let me know if I have missed any out so I add it before you submit your vote
http://www.fertilityfriends.co.uk/forum/index.php?topic=211448.0


----------



## Donkey

Hi
I’m wondering if someone can help?

My LAD test came back with a weak positive and I need LIT.  DH and I do not have a DQ alpha match so are going to see Paul Armstrong at The Portland.

Dr Gorgy says we have to have some tests within 30 days of having the LIT.  Where do we have these tests? (we were getting a little confused)
Also does it take time for the LIT to work – should I have it some time before my next cycle?

We are having an NHS cycle at the end of Nov / Dec.  I am on zoladex and have my final implant on the 9th Nov and I will start stimming once I have a bleed.

I’m really confused about timings…

Thanks
Donkey xx


----------



## Diane72

Hi Donkey,

Your GP may be able to do them if you have >10 days to spare. 

We didn't have time to wait so Dr. Gorgy can give you the forms to do them at TDL a couple of doors up from him (it cost us £410 in total for all the tests) and they will get them done in 3 days or so.

Diane


----------



## Donkey

Thanks Diane
What are the tests to ask my GP for?

xx


----------



## Red6

Hi Donkey

I have been looking into LIT with PA and I found this on an earlier thread from Choice.

LIT BLOOD TESTS


Female patient -    Blood Group
        Rubella
        Toxoplasma




Male Patient bloods must be performed within 30 days of Immunisation Therapy Treatment

Male patient -  Blood Group
        HIV
        Hepatitis C
        Hepatitis B Surface Antigen
        Hepatitis B Core Antibody
        HTLV 1 and 2
        Syphilis

Hope this helps xxxxx


----------



## Pinpin

Hi girls,

I have been having these on and off pre-AF type of pains these past couple of days which seems odd as i had EC last wednesday so I shouldn't be getting AF pains now surely? Has anyone had this before and know what the are? I'm scraed as booked in for Et tomorrow at 1.30pm with hopefully 2 blasts and worried this is a bad sign already that my body is not ready to welcome them  

Many thanks girls

Pinpin x


----------



## Sprinkles

Hey ladies hope you've all had a good weekend

lalaby I've had healthcare at home for intralipids from DrG and they are great, pretty easy to organise and stuff, bear in mind the post strike though hun as they normally want the prescription from DrG sending in the post before they'll organise anything so if you need to time correctly a courier might be the best thing.  Fingers crossed AF stays away for all the best reasons hun xxx  will have a look at your poll shortly.  

pinpin rang DrG and he said, via secretary who speaks fab english, to take the next two humira so am due to take fourth one in a couple of weeks about two weeks before starting tx.  Been messed around with my hospital somewhat, they told me I was going private but on ringing at the weekend to say I hadnt heard from private clinic was told I shouldnt have been told going private and that hospital would reopen in time to treat me next month.  Really could do with them getting their act together as this is stressful enough without them changing the goal posts every time.  Anyway, more importantly,  sounds like your embies are little toughies and sending you lots of luck for ET tomorrow hun xxx


----------



## Sprinkles

Hey pinpin just read your post.  Try not to worry, EC is quite invasive and therefore your body will react to it and sometimes that is in the response of AF like pains.  With a mixture of drugs, immunes and the whole procedure your body will be a little upside down.  As I say try not to worry, think accommodating thoughts ready to get your embies tomorrow so you can nuture them hun x


----------



## Donkey

Red
Thank you that's a great help  
Have you had LIT with PA yet?

xxx


----------



## lalaby123

My AF is sadly showing it's face so I am feeling tearful ....to make matters worse We took my stepdaughter to see Up today and Lo n behold the wife inthe cartoon was unable to hav children so I was the only one crying in the cinema watching a cartoon!! I somehow hav to find som positivity for my first IVF starting tomoro 

Sprinkle thanks for advice re prescription wen I spoke to dr g he just told me wot I need I better speak to him again if I definitely need a prescription good luck with your next humira xxx

pinpin I feel for you but as sprinkle said don't worry about pains must be from all the probing all the best on your ET tomoro I will be two weeks behind you in my first ivf with immune I really hope it will work for you first time so far you hav done great and with immune support there is every hope 

Hope everyone else is well 

Xxx


----------



## Sprinkles

lalaby sending you some hugs hun,           its never easy when AF rears its head take care of yourself.  Sending you lots of positive vibes       as well for the start of your IVF journey you'll find the strength luvvie honestly you will, all of us on here have a special strength that not only keeps us going from day to day but also makes us the strong determined women we are to get through the drug taking, immunes or whatever it is to get what we want.  You know where I am if you need an ear to bend


----------



## Cath34

Pinpin, I had exactly the same type of af pains after ee. They lasted ages and I was worried also but Dr G said our ovaries swell up and fill with fluid and blood after EC and take time to go down. I had 16 eggs and you had 12 and its worse due to the amount of times they have to go in to collect the eggs!! It will ease and he told me to take paracetamol if i wanted to. Best of luck for blasts tomorrow and ET.  

Lalaby, sorry to hear your af arrived. Big   to you. At least you can go straight into your cycle which will give you a focus.

As for me well I went to see Dr G yesterday and to my amazement we saw the heartbeat on the scan at 6wks +1 Amazing stuff! It was beating so clearly and apparently very strong, so all good so far. I hope this doesn't upset anyone, I am hoping it will give you all hope as Dr G is a guru!!!

Apologies for not keeping up with everyone, my brain is awful, and I mean awful at the mo!!


----------



## Red6

Hi Donkey

Not yet. Have deferred my NHS cycle as cant face any more tx this year so will start again in Jan with LIT  Would be really keen to hear how you get on with PA - good luck with this  

Pinpin  - after my first EC it felt like my body had been hit with a bulldozer.  I think its the shock to the body that causes the AF pains - prob completely normal but not very nice all the same so try not to worry. ET is easier on the bod - Good luck, hun xxxxxxxx

PS Cath just read your news - that is fantastic   congratulations,  it gives everyone hope i am sure xxxxx


----------



## lalaby123

Thanks sprinkle and cath  i don't think I am as strong as som if u but all of your courage gives me hope and courage

cath that is absolutely wonderful news about the heartbeat  it must hav been so unbelievable for after the long journey u hav been on... I personally can't imagine the day I will see two lines on a test let alone hear a heartbeat so it is very very encouraging and just what we want to hear to keep us going


----------



## Diane72

Hi donkey, I'm in a hotel up in Nottingham as I have ET tomorrow (I'm writing on my phone). I don't have the list with me but what Red wrote looks right. If you want to be sure just call Gorgy's office and the secretary can fax or post you the list. I'll look when I get home too.

D x


----------



## lalaby123

Morning ladies, I have a couple of questions which I hope some of you can answer. As always i want to be a few steps ahead of myself so that i am prepared for what's to come. So i want to know with the start of my first IVF today, what happens if I get pregnant and what happens if i don't in terms of immune treatment. I am having IVIg and intralipid before ET, will I need any more infusions the rest of the cycle or do you only need more if you get a positive pregnancy test in which case does Dr G recommend IVIG or Intralipid and how many times
Both IVIG and intralipid work for me and my NK activity was 24 all else fine. And if it doesn't work then what does Dr Gorgy suggest for the interim period between next IVF cycle. Do you stay on the drugs or come off them and then restart?? Sorry so many questions but I just want to know what's ahead to prepare myself mentally and financially. thank you all
L


----------



## Han72

Hey Lalaby

congrats on climbing onto the rollercoaster!  I've never actually done a full cycle with Gorgy so can't answer in too much detail but didn't want to read and run...

My experience at the ARGC was they did IVIG the day after ET and then again when I got a positive pregnancy test.  (They checked my immunes the same day as I got the BFP and said I could either have IVIG straight away or wait for the results to come back first but I went for it anyway.)  After that I think it depends on your immune test results.  Same with the choice between IVIG and Intralipids, I assume he'd go with whatever works best for you.

IF it fails then I would guess that he might ask you to continue with steroids and aspirin.. not sure about the clexane tho as that's quite heavy duty

In all honesty though I would say although it's good to have an idea of what may or may not happen, it's best to go with the flow. I didn't call it the rollercoaster for nothing , things can change from one minute to the next and everyone is different so I really would suggest an open mind and the most relaxed attitude you can manage.  Also, do you do yoga or anything like that (sorry if you've already said, I really tend to just skim read posts!) Zita West does an excellent hypnotherapy CD, as does Maggie Howell.  The other advice I can offer is:

1 - food and drink 
- drink loads during stims and the 2ww - 2l of water and 1 of milk if you can manage it, helps the follies and womb lining to develop during stims and helps stop the empty follies filling with blood after EC. 
- If you can't handle milk then substitute it with more water/fruit juice (fresh pineapple juice is best for the selenuim content) and try to increase your protein intake in other ways, yoghurt, cheese, beans, pulses, whatever  
- Brazil nuts are good for selenium, I thin Zita suggests 5 a day or something like that to help with the womb lining

2 - keep your tum warm during stims. Those little sticky heated patches for muscle sprains/period pains are great if you need something discreet while you're out and about, otherwise, a good old fashioned hot water bottle will do, but not too hot! Embies and follies like warmth but not sauna like temperatures

Sorry can't think of anything else!  Hope this helps hon and wishing you all the very best of luck for your first IVF cycle     

xxxx


----------



## lalaby123

Nixf01- thanks very much for all that advice which I shall take on board immediately - yes i know what you mean about having an open mind, i just wanted to be prepared for the costs as i got a bit of a shock this month when Dr G changed his plan from intralipid to 2 x ivig and we settled on 1 x ivig and 1 x intralipid....but you are right i need to just go with the flow and yes i do yoga and tai chi and will look into the Zeta west meditation cd as the one i have isn't very good - let the roller coaster ride begin   ps did i say i hate roller coasters


----------



## Han72

lalaby123 said:


> ps did i say i hate roller coasters


  

xxx


----------



## Cath34

Lalaby, Dr G gave me IVIG x1 a week before and also another a few days before EC. If you get a + he will give you another immediately,  and again at HB scan. If not and you go for a frozen cycle afterwards (straight after is good as the IVIG is still in your body so make the most of it, thats what I did) he would give you maybe depending on your levels around ET. Apart from that you wouldn't have it unless you are cycling or if like me you are pregnant and I need it once a month in order to keep my levels down and stay down. I hope this makes sense?


----------



## Donkey

Red I'll let you know how I get on.  I understand you needing a break...I don'really have a choice as this is an NHS cycle and I'm now 39 the cut off age  

Diane I'd really appreciate if you could double check the lst when you have time.  Huge amounts of luck for tomorrow and the 2ww  


Cath so glad things are going well for you  

donkey xx


----------



## Peanuts

Hi girls

Boy can you chat! 

Cath - so happy for you and your scan results, must have been very emotional seeing that wee heart beat  .  I thought you didn't have IVIG this time around, sorry if I got confused.  Did you get another IVIG at your scan?

Lalaby - so sorry that AF raised her head, but glad you've got started on your cycle .  Hoping the yoga and tai chi keeps you calm through your txt and the IVIG & Intralipids do the trick.  Sending you lots of hugs a positive thoughts for your cycle        .  Have done the crying at cartoon movies too - think it was Shrek 2 that did it for me - lots of Shrek babies at the end! 

PinPin - how did ET go today, hope you got 2 Blasts on board and others for the freezer.  Keeping fingers & toes crossed for your 2ww        

Diane - sorry to read of your losses   and IF journey.  Hope your ET went well today and sending you lots of luck for your 2ww      

Sprinkles - thats for letting me know about timescales for results, will give the clinic a call on Friday to chase.  Sorry to hear the hospital has been messing you around, but hope things are now settled for your txt.  Good luck with your next Humira shot and LAD retest   

Big hugs to those I've missed
Dxx


----------



## Newday

Congrats Cath!

Can I ask you ladies a question I was due to have FET this saturday and have had intrlipids in anticipation I have had to cancel due to poor lining. Do you think I will need intralipids again next month?
dawn


----------



## lalaby123

Dawn sorry u hav had to cancel this cycle :-( I am sorry I don't know the answer to your questiony guess wud be yes to be safe 

Cath thanks for your reply re ivig  

Peanuts I'm glad I'm not the only one crying at cartoons  

Ladies I hav a question a rather personal one I am afraid 
I have just been to the bathroom and found a lot of 'tissue' in my menstrual blood like dark red stringy veins about .5 cm wide and 5 cm long it looks just like what I passed wen I miscarried I want to know is this normal or hav I had another early pregnancy loss thanks to the lovely NK cells? Sorry to ne so graphic but it's all out in the open here !!


----------



## Bettysjourney

Hi 
Could I crash in for some advice please.
I'm at a bit of a loss right now, just had BFN no 6 and before I go any further feel it right to have full immunes checked.
Does anyone have a definate list of Level 1 tests?
My GP has agreed for me to have these done free.
I think I will be making an appnt with Dr G for the Level 2 chigago tests - has anyone been able to claim the cost of these investigations with BUPA?
Many thanks ladies.
Betty xx


----------



## Red6

Hi Linnie - I found this list of level one tests on an earlier thread and used these as my guide and my GP was quite willing to do them. I think it covers everything. Prob the level two tests are the most important ones. I think quite a few ladies on here have used BUPA and managed to get testing and consultation covered but I cant say for sure as I dont have any BUPA cover 


1.Full blood count, liver function tests, Urea and Electrolytes
2. Thyroid function tests (both free T4 and TSH)
3. Immunoglobulin panel (IgG, IgA and IgM)
4. Autoimmune antibodies (must include anti-nuclear antibodies,
thyroid peroxidase and anti-mitochondrial antibodies)
5. Anticardiolipin antibodies (both IgC and IgM)
6. Thrombophilia (must include lupus anticoagualant, Factor V Leiden
and Panthrombin gene mutation


Lalaby - are you ok hun that sounds pretty awful - I am sorry cant give you any advice as not experienced this before but I am sure someone will be able to advise. Hope you ok  

xxxxxxx


----------



## Red6

Oops Linnie sorry I forgot about the MTHFR mutation detection test - some GPs can organise this also(worth a try) xxx


----------



## Saffa77

Ladies

Do any of you know if AXA PPP cover these blood costs  Im seeing Dr Gorgy next Monday.  On my axa plan I have £900 pounds worth of diagnostic testing available etc which i know can be for any blood test as got all my FSH and hormone profile covered by them.  I guess I just need to find out if Gorgy is covered by axa PPP Healthcare.

Sx


----------



## Ourturn

lalaby - was AF late? I have never had anything like that with any of my mc's With my recent mc I passed what looked like clear jelly and something similar to a v small piece of liver   Presume that was the sac. 

linnie - I know one lady was able to get the 1st £1000 of her immunes paid for by bupa. I am with another provider and they are paying for my chicago tests but not the treatment. 
I do not have a list of level 1's even though I have had them all. Try searching on recurrent miscarriage tests 

Saffa - I was with PPP and I used them for recurrent miscarriage investigations but they stopped covering it. This is the angle I have gone in with Simply Health to get my immunes paid for. 

Anna x


----------



## niccad

Hi - I'm trying to get Bupa to pay for my tests... got an authorisation number but still waiting to hear from DrG's secretary to see if they have paid yet. It's been over a month since the bill went in. I had an appointment with Dr G this morning to go through exact dates for all the TX and for some rushed last minute tests for DH so that LIT can go ahead next week. If you think you'll need LIT in the next 30 days try to get GP to do these tests too as the cost soon mounts up...  

His plan for me is as follows - what does everything think? It's a natural FET cycle so a lot depends on whether my little embies survive the thaw:
23rd - AF should come
30th (day  LIT with Dr Armstrong and start on clexane and pregnisolene
2nd (day 11) intralips
~6th (day 15 - depends when I ovulate) start Gestone
IVIG - have on the day I hear if my embies have survived the thaw (so maybe day before ET or ET day)

Linnie - sorry but I don't have a list of the type 1 tests...

Lalaby - when i get AF I often get (sorry TMI) globs coming out which can sometimes be quite big. I always assumed it was my lining coming out....

Newday - I'm sure DrG will let you know how long the intralipids last in your system.. he's really good at answering things like that on the phone

Hi to everyone else & congrats again to pinpin for being PUPO!!!!  

Nic x


----------



## niccad

um... the sun glasses man wasn't supposed to be on my last post...


----------



## Saffa77

Hi sobroody - I am going to try use the tests for gynae issues as long as Dr Gorgy is under PPP then that is ok I will get £900 pounds cover for the bloods.  Seeing as you have been to Dr Gorgy and used PPP I would presume he is registered under PPP is that correct?  LOL getting so confusing.


----------



## Ourturn

Saffa - I have not been to Mr Gorgy yet and I am no longer with PPP. My new provider did not have Mr G as an approved consultant. However his partner is Bupa registered. I am seeing Dr G through his partner.
Hope this makes sense


----------



## Ourturn

Meant to say my provider does not cover ANY form of infertility investigations, so be careful not to use that word.


----------



## Saffa77

Yes i know what you mean.  Just called PPP and they say Dr G is not with PPP so they wont pay.  Last time I got bloods paid for them that mentioned for IVF lol and they didnt say anthing cos they said to me that I can get whatever bloods I need with the £900 its outpatient.  

but know what you mean.

Sx


----------



## Ourturn

Saffa - call back and ask about Mt A Eskander (Dr G's partner)


----------



## Saffa77

Really?  does he do the same tests etc?? how does it work - have just sent PPP an email asking about him.  LOL.

Sx


----------



## Ourturn

The receptionist says we need an appointment to see him for 10 mins, but will be spending an hour with Dr G. Not sure how they wangle it but they do!


----------



## Diane72

Hello All,

I hope all are well.  

Donkey, just got back from Nottingham last night and was out early this morning as I had LIT with Armstrong today. I checked the list of screening tests on my form, they are as follows:

Female:
- Blood Group
- Rubella Antibody (IgG)
- Toxoplasma IgG abs, IgM abs

Male:
- Blood Group
- Syphillis IgG/IgM
- HTLV I & II
- Hep B Surface Antigen (HbsAg)
- Anti HBC (IgM)
- Hep C. Ab
- HIV 1& 2 /p24 Ag screen

Separately Armstrong will want your DQ Alpha results for you and DH and LAD results for you.

We had the LIT today, it was relatively straightforward.

Hope this helps,

Diane


----------



## lalaby123

Niccad, sobroody and Reds thanks for feedback on periods....my period was bang on time 28 days and i did a pregnancy test which was ofcourse negative...it just looked so different to usual periods i thought it might have been another early loss oh well will never know.....

Niccad good luck with your FET cycle, Dr G has big plans for you! I hope the embies will survive the thaw

As for me first day of Menopur injections today ...let's see how DH copes    I might have to take over half way through now that i am a pro from injecting Clexane.....anyone got any tips on how to be positive would love to hear from you!


----------



## Diane72

Hi Lalaby,

 Sending you lots of      

Re: being positive, my only tip for this journey is to just keep taking one step in front of the other and no matter what knocks you down, keep putting one foot in front of the other, at times you will be able to see the path ahead at other times you just need to focus on the next step, but keep putting that one foot in front of the other  

Good luck for this next round!

Diane x

P.S. I may need a laparoscopy, I see from your profile you had one where did you have yours done with a clinic or on the NHS?


----------



## Donkey

Thanks Diane, that's a great help.  So glad it went well.

Where are you in Herts?  I'm in Welwyn Garden...

xx


----------



## bluprimrose

hello all

am just book-marking for niw but am guessing i may need your help and advice!

bpxx


----------



## Han72

Hiya

just a quickie Niccad, that little sunglasses bloke comes up if you type 8 ) without the space = 

xxx


----------



## lalaby123

thanks Diane72, I will remember what you said.....I had lap privately in Manchester, fantastic doctor i would highly recommend but i see you are down in Hertfordshire :-( make sure you get someone highly experienced as the recovery is so much better and less scarring.


----------



## Diane72

Hello All,

Lalaby, thanks for the advice. Hopefully this cycle will work but the clinic didn't collect from my left ovary as they couldn't reach it and thought there may be an issue.

Donkey, I'm in a village called Chipperfield near Hemel Hempstead on the Bucks/Herts border but I work in Hoddesdon at the other side of our county and on Friday nights I always avoid the M25 and drive home 'across county' so not too far from Welwyn! 

bluprimrose, hello!

Niccad, good luck with the cycle!

Hugs to everyone else

Diane x


----------



## Sprinkles

Hey girlies

Hope you are all well, just a quick one before start getting ready for work.

Pinpin, how you doing hun?  You ok?

Diane glad you got through the LIT, fingers and toes crossed for you x

Lalaby my AFs have all been different since starting immunes, you mentioned you're already on clexane which could be the reason.  Nix gave a good list of things to be aware of for your first cycle, one thing I learnt on here that no-one told me at the hospital (well dont tell me much really) was no baths or swimming after ET, and also the drinking lots of fluid is really important whilst you're stimming.  

Cath lovely news, take care xxx


----------



## ells

Hi ladies,

sorry I have been on for ages but I have been sick again   , i have got a really bad kidney infection which the doc thinks is related in some way to my crohns and I have been feeling pretty rotten all week    .  I am not at work as my back really hurts and I feel sick all the time.  Its not nice.  I hope I will get rid of this quickly though as we are supposed to be going away next Friday on holiday with our friends and my mum goes into hospital on Monday to have her heart valve op on Tuesday and I really want to see her before the op and then before we go away.  Its all really bad timing and I feel so guilty about going on holiday whilst my mum is in hospital.

Hello to all the new ladies, you have found a very supportive thread here with some very knowledgable ladies who will be able to answer your immune questions.

Lalaby hun, I had the same thing on our last cycle when I thought something had happened but when I raised it with the doctors they said that if it were a mc then it would be too small to see   but she said that although it was white it can still be your lining   .  I still believe mine was a mc but i will never know.  I didnt have any side effects when I was on menopur and I found the injections pretty easy and straight forward as the needles are nice and thin.  Good luck hun     .

Pinpin, how are you sweetie?  How are your blasties?

Sprinkles, when do you go for your levels check?    It sounds like you have been having a bit of a nightmare with your clinic. Do you think that they know you are supposed to have the least amount of stress as possible   .  Can you have a moan at someone to get them to get their   's in gear?

Cath, hun wow I bet that was an amazing sight   .  How are you feeling?  Are you starting to relax a little more?

Omni, hun how are you?  How is your bump - I bet you must be showing more now??

Choice, if you're reading, hope you and bump are doing okay.

SarahH,  I hope you are able to get some answers when you see the specialist for DH's swimmers.  Did you sort out the acupuncture?

Nix how are you sweetie?  I cant remember, so forgive me if you have already posted this but when are you cycling again?

Hi everyone else. hope you are all okay.

I have a question, when doing the LP when would you start the clexane and at what point would you have Ivig/intralipids and go for LIT with PA?  Just trying to figure out how to time everything.  Hopefully when we get back from holiday we will have our appointment date through for our NHS cycle.

Ells


----------



## Cath34

Ells, thanks for asking, I am 7 weeks today and feeling very sick indeed this week!!!!! All symptoms are well and truly kicking in!!!
Sarah, I hope today went well hun, let me know I am thinking about you.
Hi to everyone xx


----------



## Han72

Ells     sorry you're not well honey and I hope you feel better soon and that your mum's op goes well        Not a clue about the timings hon cos I'm not doing LIT but I bet one of the lovely girls will be along shortly with the info you need 

Hey Cath - hooorah!!! for the symptoms     Never thought I'd be pleased to hear about someone feeling sick!  Seriously tho, have you tried ginger biccies, I've heard it helps to chomp a couple about 20 mins before you get up and then to eat little and often throughout the day to keep the sickness at bay     

AFM - waiting for AF to show her ugly head, I suspect it'll be at some point within the next 7-10 days then I'll need to come and see Dr G for Intralipds some time between days 5-8 of stims...  I'm so excited I feel sicker than Cath!   

Love to all!

xxx


----------



## lalaby123

Ells, thanks for your thoughts and so sorry you are feeling unwell again, you have been through a lot i really hope you recover fast for your mum and your holiday xxx

Cath, glad you are doing well and its good you have symptoms its a constant reminder that you are FINALLY PREGGERS YEAAAAAAAAAAAAH 

hi to everyone else, just back from Acupuncture where I shed lots of tears and now feeling much better


----------



## Peanuts

Hi girls

NewDay - sorry to hear about your cancelled cycle  - hope DrG can give you some answers re Intralipids question

lalaby - congrats on starting stimms, hope the injs go well and the happy hormones start to do their thing - grow follies grow     Glad you're feeling better after acupuncture 

Linnie - so sorry about your BFN's  . You can find a list of level 1 & 2 tests on the Immune thread: http://www.fertilityfriends.co.uk/forum/index.php?board=52.0 Good luck getting tests organise, and hopefully paid for 

Saffa - good luck for appt with DrG on Monday, hopefully all the chat on here will start to make some more sense for you - it did for me! 

Niccad - wow, thats some txt protocol DrG has you on - wishing you lots of luck for your FET      Thanks for the info about LIT tests from GP.

Diane - Congrats on being PUPO! Thats great news, wishing you lots of luck for 2ww.      That was great advice on staying positive and taking one step at a time - thank you 

Ells - sorry you're not feeling well hun   My aunt has lived with Crohns most of her life, so know how horrible it can be  Hope your mum's op goes well, and try not to feel guilty, she'll be in great hands while your away 

Big hugs to everyone I've missed  
Off to gym class tonight, determined to lose some weight and get fitter before next txt.
Dxx


----------



## Kazzie40

Hi Girls sorry I disappeared but have been ransacking my house looking for anything not pinned down that I can sell to pay for the immune treatments I'm on.

Cath wanted to say many big congrats on your BFP, am so chuffed for you. Re the morning sickness, I had it very very bad and discovered in the second pregnancy that lucozade (must be the original not sport ones ) was the only thing that took the edge off so I could eat something. Hope that helps and fantastic news on seeming the H/B - makes it seem more real doesn't it!

Nix - it was so lovely to meet you and have a gossip the last time we were both at Dr. G's. I reckon we could have chatted away for hours. Will you be going again soon? Good luck for your next plan of action.

Omni - it was also lovely to meet you as well, and the other lady we both chatted with whilst we were having our drips! Hope everything is still going well.

Sarah H it was nice to see you again even if it was brief - whats your plan of action do you think?

Good luck everyone starting IVF soon I'm sorry but have got too behind to do more personals this time.

I went to Dr. G on Monday and had my 3rd intralipid drip in preparation for this months natural try. My Th1/Th2 ratios test results came back that it seems the Humira is lowering them, they are not quite where they should be hence Dr. G wanted me to take another two. I took the fourth dose yesterday and will go up to London next week to have it all retested again.

I took clomid this month and am going to the hospital to see if there are any follicles ready to go.

So thats where I am at the moment, I promise to find out where the rest of you are in the next few days.

Take care love Karen xxxx


----------



## mag108

Hi All
I hope you dont mind me joining in?
Recognise some folk, hi Sobrrody and nix!

I am usually on PR thread (poor responders). 
Just over my 3rd m/c. Just received my immune tests results today, havent yet dissected them and wondering if there is any ingenious guide on this thread? Have the DR Beer book so am off upstairs to read that to try and make sense of the numbers.
x


----------



## Sprinkles

Hi ladies

Ells oh so sorry you’ve been poorly again you’ve definitely been through the mill hun x   Hope you’re mums ok.  Going to have my levels checked next week hopefully, need to get some train tickets.  And yes I don’t think my clinic get the idea of less stress is so much better when you’re going through all this rigmarole.

Cath sorry you’re not feeling too good either, but all in a good cause x  

Nixf01 ~ little AF dance for you my dear     so you can get going

Lalaby ~ glad you’re feeling a little better, always find a good cry does the trick sometimes.

Hi mag108 and other newbies I missed last time, sorry for your news this thread is really helpful for anything immunes and DrG is fab.

Well for me the saga of where the heck I’m going for next tx continues.  After being told at weekend that hospital probably would re-open and that I would be treated there next cycle, got a call on Monday to say whoops no, my bloods had come back but they don’t now think they will be open in time and did I want referring private?      You can guess the answer.  Suppose have to be grateful that they actually rang me and didn’t just let me turn up to a closed clinic in a few weeks time, but what a performance could really do without it.  Anyway took initiative and rang referral clinic the day after and they have my name but waiting for my notes to come over and then they will be in touch next week, sounded really helpful and stuff so fingers crossed.

Hopefully down to DrG on Tuesday to have LAD retested after Greece if I can get some train tickets, would have done blood test up here but after last time when they were only just delivered in the nick of time and the post strike being on not going to risk it.

Love to everyone x


----------



## Diane72

Hello All,

I just wanted to ask any of you who have had LIT whether you all had a skin reaction. I had my LIT yesterday with Armstrong but there's no itchiness, raised skin etc. nothing so now wondering if it has done anything and going a bit  

Mag, so sorry to hear about your miscarriage. I too have had recurrent miscarriages (4) and I am looking for that missing jigsaw piece- where did you go/what treatment did you have last round?

Sprinkles, hopefully the next clinic will be much more efficient and it along with Gorgy will be the perfect combination!  

Ells, sorry you haven't been well   sending you lots of hugs   Hope everything goes well with your Mum.

Nixf01, Good luck with the next cycle!

Kazzie, we gave up on selling things and I now have a grand total of 6 credit cards that I spend my life trying to balance transfer to better deals but I am fast running out of option!   Glad to hear the treatments seem to be working for you though.

Peanuts, I do know that 'in-between' treatment get fit/lose weight phase so well. I was doing an hour cross-trainer every night before starting treatment again to get my BMI down. The issue is once I stop for treatment it all seems to pile on-I've put on nearly 10 pounds in the last couple of weeks despite trying to watch what I'm eating. Oh well I guess yo-yo-ing is better than going up and up and up!

Pinpin, how are you doing? 

Cath    

Hugs to everyone else,

Diane xxxx


----------



## Sprinkles

Hi Diane

My first LIT took a good few days to become raised and itchy, everyone's different and only real way of telling thats its worked is by blood test so try not to worry xxx


----------



## mag108

Diane
First was nat pg, m/c at 11wks (AUG 07)
2nd was clomid pg, m/c at 10 wks (AUG 0
3rd was nat pg, m/c @ ? wks (suspect around the same time, missed m/c) (AUG 09)
1 round of IVF, 2 blasts BFN (May 09) Lister Clinic

I am sticking with Lister but seeing Dr G for immunes.
Live in Manchester (luckily its 2 hrs to london on the train!)
X


----------



## ells

Thank you ladies   you are all sooooooo brilliant.

Mag108, welcome to the thread hun.  Sorry to hear your story   . If you post your results on the thread I am sure we will be able to help you decipher them and give you an idea of what Dr G may suggest.  

Sprinkles, bloomin eck   .  Like you say at least they rang you.  Fingers crossed for an appointment with the organised clinic next week.  Have you thought about making sure that your current clinic has sent your file over!!!

Diane, I havent had LIT yet but I know there is a lit thread on the immune board which may help   .

Kazzie - know exactly what you mean about costs   we have been very fortunate in that we managed to win our appeal with our PCT for funding so we have a bit of a breather this time round - hopefully     we wont need to worry about anymore     .

Peanuts, hummmm gym whats one of those   .  I hate those places.  I have taken to walking and making sure that there are a few hills on the route.  I am looking at starting yoga at one of the local schools but need to find out when the next course starts.  I also have a stepper in the spare room which has worked out well as an extra clothes horse   .  Seriously though, I also need to shifts some weight pounds and need to get my   in gear once I am feeling better.

Nix, ooooo exciting!  Hopefully AF will behave and start soon.

Cath the sickness must be making it all feel real.  I cant believe its 7 weeks it seems like yesterday when you were soaking up the glorious Floridian sunshine and making the most of shopping in the US!!

Hi to everyone else   hope you are all okay.

I am going to get off to bed as feeling really tired,hopefully the tablets will do their magic tonight and I will wake up feeling much better   - would be nice to get a couple of days off from work and actually be able to enjoy them a bit     .

Nightie night all,

Ells


----------



## Pinpin

Hi girls,

Thank you so much to all of you who have asked how i'm doing. I am now PUPO with 2 blasts since MondaY! Sprinkles, ells and diane sorry for not posting earlier on this thread i have been through quite a bit these past couple of days, I was nauseous on day of ET and day after and on top of it the day after ET my in laws called me to tell me they had betrayed us by telling my BIL and his girlfriend about our infertility and the fact that we are having ivf. They also told me that the reason they told them is because they announced to them that she is 5 weeks pg.
I cried for hours, feeling hurt, betrayed, shocked and angry.

All i can do now is pray that this has not affected my chances. I have not been getting any implantation symptoms and fear the worse.

Ells, i'm so sorry hun that you are poorly, you must take the time you need to recover properly

Sprinkles, i hope you get some dates and clinic soon!

I'm on my phone in bed so will be back later to catch up properly.

Love
Pinpin x


----------



## Cozy

Pinpin.

Dont worry about implantation symptoms, there arent any text book "symptoms". We are all different and most symptoms people feel are due to pessaries and other meds, nothing to to with implantation at all.

I doubt your upsetting news will affect your chances, though the timing of being told this could have been at a better time. Just think you could be pregnant at the same time. Try to keep positive.

Anyway, I hope your 2ww passes quickly and I hope and   you get a BFP.    

Take care  and good luck 

Cozy


----------



## lalaby123

Pinpin, congratulations on being PUPO although i have to be honest and confess that I don't actually know what PUPO stands for but know that it means you have embies on board!! I hope you can stay positive for the next two weeks and don't let your BIL's news bother you. Everyone has their time and yours will come hopefully its this time and you and SIL can both be pregnant together. Wishing you a BFP in two weeks time xxx


----------



## niccad

Morning... PUPO means 'Pregnant Until Proved Otherwise'.... 

Pinpin - hope you managed to get some sleep last night & are enjoying some comedy on TV today. I have the maggie howell IVF assistance cd if you want to borrow it.. let me know 
Nic x


----------



## Cozy

Hi Lalaby,

PUPO means pregnant until proven otherwise. Some people like to use that term when they have embies on board.

Hope you're ok?

Cozy


----------



## lalaby123

AHA thanks for that niccad and cozy ....I like that very much 'pregnant until proven otherwise'  

I am fine except worrying about OHSS already as after one Menopur injection i started feeling ovaries bleeping, is this normal girls?


----------



## Red6

Lalaby - hope you dont mind me asking but just wondering as see from the purple writing that you are doing the short protocol this cycle. Did Dr G advise this or your clinic or was it something you specifically wanted to do. I have asked local clinic if i could do short protocol for next cycle and they were fine about this but when i mentioned it to Dr G he did not sound that enthusiastic about short protocol so i was left a bit confused - as usual! 

Pinpin -Congrats on being PUPO take it easy on 2ww    

xxxxxx


----------



## Diane72

Pinpin,

So sorry to hear you have been upset   I think it is hard to hear when someone else close to you is pregnant. My sister, who had previously said she would be a surrogate for us, went for dinner with me last month to tell me she was pregnant again and didn't say anything the whole meal but texted me when she got home. While driving to work the next morning I had to pull into a layby on the motorway because I was sobbing uncontrollably, I cried so hard and more over the next few days   No matter what my head said the tears kept coming. Its just so so hard and I really don't think any of our families understand or have insight into how much this dominates our life, being, soul, only other people going through the same thing really know what it is like. I have given up keeping it a secret as people then say things that really hurt without knowing they are doing it. My ex-boss at a function the other month said how surprised she was that Mark and I hadn't started a family yet and I simply said we'd love to but have unfortunately had 4 miscarriages-that shut her up!

Sending you lots of  , you are not alone, lets survive this 2WW together!

Diane x


----------



## lalaby123

Red - i am at Care in Manchester and they seem to favour short protocol as long as your periods are very regular and  you fit certain other criteria.....it is meant to get better results with older ladies and poor responders as well.....why do you want to do short protocol?? and why did Dr G not advise it??


----------



## Cozy

Red,

I've always had a short/flare protocol and have been to ARGC and Care. The only place where I went for a consultation where they said they would put me on a long protocol was Liverpool Womens Hospital. They all had different reasons for saying/doing what they did, but I was happy to go with the short.

I would ask Dr G why he is not thrilled about a short protocol and ask your clinic why they recommended a short one for you and see what they both say, and take it from there.

Cozy


----------



## niccad

Lalaby - your ovaries buzzing / bleeping is absolutely normal. I was freaked out too as within 2 hours of the first injection I could feel them.. It was like they were waking up. By the end of stimming it felt like I was carrying two lumps of lead around.... Since TX I can now feel them ovulating which I could never feel before! all very very odd... 
Nic x


----------



## sydaloka

hi,

Does anyone know what blood test Dr G does before he treats with intralipids?

Many thanks.


----------



## Red6

Hi Lalaby/Cozy

Thanks for your advice - I am happy to try short protocol in Jan/Feb time and clinic seems ok with this. Dr G did not disagree with it just questioned me on why I wanted to do this instead of LP - i think he may have recommended LP if i was cycling with him. Lalaby - I found LP quite hard going so thought this might be a better alternative. Basically i want to try something different to see if it works better  

xxxxxx


----------



## Ourturn

Red - the short protocol works well for most people and is a little less grueling. Unfortunately I do not respond well to the sp. With my 1st ivf and lp we got 6 eggs and 4 embies, with our second using SP we got two eggs and one embie which did not survive to transfer. 

Diane - you are right, people do not understand how hard it is unless they have been through it themselves   I too am quite open about it but find people can still be very insenstive. E-mailed a close friend about my 7th mc and got an e-mail back saying sorry, then she went on and on about her kids and attached x2 photos!  

Ells - hope you feel better soon  

Pinpin - congrats on being PUPO! Being upset will not effect your chances  

Hi everyone
Anna x


----------



## Diane72

Hello All,

Sobroody, I sooooo know that feeling. My DH gets really upset when people send loads of pics. of their kids to us on e-mail-they really just don't get it.   Its not just 'a miscarriage', its the loss of our so much loved tiny ones, loss of the joy & hope that others feel when they get a positive pregnancy test, and the loss of 'a family life' that we mourn every day, but if you haven't been there you just don't get it. Even my consultant at one point said 'well at least you know you can get pregnant' and I remember just sitting there screaming in my head, 'what does it matter if I can never hold a baby in my arms, being pregnant a 100 times means nothing if you lose it a hundred times'; I said nothing. I am so sorry that you have had to go through the pain so many times  and I am sending you a thousand wishes of good luck for the next time  . We can get through this together and stay hopeful, keeping that one foot in front of the other   

Red, I've always been on long protocol so I can't shed much light.

Sydaloka, I already had my immune test done with anothe clinic when I went to see Dr G. However, I presume he does the full immune profile aswell as looking at how you respond to IVIG vs. intralipid based on what others have said (my clinic did not look at this response test).

Niccad, hop all is well with you

Cozy, lalaby, Pinpin, Sprinkles, Ells, Kazzie, Peanuts, Nix, Mag and everyone else-thinking of you!

On another note, CARE have told me that they just give intralipids if I get pregnant not IVIG but when I saw Dr G his reco was to combine intralipid and IVIG. By 'combining' do any of you know does he do the IVIG on separate days/the same day?

Diane


----------



## lalaby123

Diane re ivig i am at care in manch and immunes with dr g he wants me to hav ivig and intralipid so I am doing ivig with him and care r organising intralipid and yes he will tell u which days to do them mine r day 8 and 10 of cycle I am hoping to get a presc from him for future ivig to hav at home with HCAH

I hav had two jabs of 225 mg menopur and already not feeling well at all I feel short of breath dizzy hot nausious spaced out and ovaries bleeping if it continues tomoro I mite call the clinic just to put my mind at ease I am prob panicking as first go and my symptoms r prob normal 

Ells how u feeling? 

Hi to every one else can't type much on phone xxx


----------



## Red6

Hi Diane

Sending you lots of   for your 2 ww and a   - I feel the same about pics especially at xmas when ev one sends out pics of their babies dressed up in funny little costumes in their xmas cards. I cant blame them as I am sure i would do the same if I had the chance but still, people are really insensitive - and they think they are cheering us up  

How is everyone this evening - its ******* down here - dog leaving horrible puddles all over the floor!!!!!!!!!

xxxxxxxxxxxxxx


----------



## Red6

oops I didnt realise i had used a swear word. Its raining hard! 

Lalaby - just read your post - I think you should definitely phone your clinic tomorrow as you should not be dizzy or short of breath.

xxxxxxx


----------



## lalaby123

Thanks reds I didn't Wana b a wuss but I think I will do that as i wud hate to hav a canceled cycle and Lose my only nhs cycle


----------



## Diane72

Lalaby,

You need to be careful its not OHSS so do call your clinic. Do you suffer from PCOS? If you are sick / have severe pain you should phone their emergency line. Do drink plenty of water.

Thanks for the info. re: your approach w. Gorgy

Red thanks for the    

Diane


----------



## Han72

Hi all

Lalaby - how are you this morning? Did you give the clinic a call?  It could well be simply worry/excitement over the whole IVF experience, but it's definitely best to get it checked out lovey   Also please do make sure that you're drinking enough, a minimum of 2 litres of water a day to keep your system flushed through and keep scoffing lots of protein!      

Love to all!

xxx


----------



## lalaby123

thanks ladies i am okish, this morning i woke up with a tight chest at 5am and couldn't sleep anymore then i googled tight chest and menopur and saw that it could be an allergic reaction, i had a shower to calm my nerves in case it was just a case of panicking and then saw how swollen my face, lips and tongue were so i panicked more and called the hospital who said I might be having an allergic reaction and have to go and see the doctor at 1pm. I am however feeling better since but now am so upset as they said they may have to cancel my cycle which i really don't want. Hopefully they will just change the dosage or the drug. I am glad i get to see the doctor at least as so far i have only seen nurses being an NHS funded cycle.....  that they won't cancel my cycle and send me back to St Mary's


----------



## Cozy

Hi Lalaby,

I'm sorry to read you are having a few problems, I hope they can be easily sorted with a change of meds.

Are you at Care at 1pm? They'll sort you out, they wont cancel you unless they have to. The last thing you want is to have to go to St Marys.

Good luck     

Cozy


----------



## Han72

Hey lalaby - good luck with your appt chick and I  they'll just be able to give you some anti-histamines and then some different stim meds so you can continue with this cycle


----------



## ells

Morning ladies,

Lalaby   , I hope it will all be okay and they will give you an alternative drug.  There are a few others about that I am sure they could give you. As a rule of thumb the clinics only do cancel as a last resort so I am sure they will sort you out.      .

How is everyone else this morning?  

Well I am feeling a little better   .  Still not right but it seems that I am worse in the mornings.  The doctor gave me some more antibiotics so hopefully they will kick in soon.  I have to go an get out my PJ's and get dressed - that always makes me feel better!

I will pop back on later.  Lalaby sending you big   .

Ells


----------



## Han72

Big    for you too Ells hon   I'm glad you're starting to feel a bit better now tho    

xxx


----------



## lalaby123

thank you lovely ladies its good to know cancellation is their last resort, i am feeling better so hopefully just needs a bit of tweaking and some antihistamines will update later after going to Care at 1pm

Ells, hope the antibiotics will do the trick, don't forget to take good bacteria afterwards


----------



## niccad

lalaby - good luck with the appointment. What dosage have you been on? I hope that they just do a bit of tweaking... 
x


----------



## Diane72

Lalaby, sending you good wishes for the appointment, as the others have said there are lots of alternative drugs they can give you.  

Ells, hope you get better soon!

Last day of working from home today for me, back to work 'in person' on Monday....

Diane x


----------



## Sprinkles

Lalaby hope you got on ok at your appointment and they can sort out your meds.

Just a quick visit maybe back later need to go and make tea am starving...... Chicken garlic pizza and salad...mmmmmm


----------



## lalaby123

hello girls, i tell you I can see why they call this a roller coaster, i'm only on day 4 and the ride has begun, I am suspected of having allergic reaction to menopur so have been to told to skip dose tonight and inject 1/3 dose tomorrow morning and see if i react and depending on that then either continue or stop the cycle it is all too stressful, now I don't know if i should have IVIG on Monday as if i am the reacting type i probably will react to that as well. I have emailed and txted Dr G and waiting to hear back......My face is very swollen well it had puffed up with the steroids but since injecting menopur it has swollen more.....i look like a puffa fish. As if that wasn't enough during dinner tonight suddenly i felt my front bottom tooth hollow out. Yes a big chunk came off the back of my tooth!!! I am sure its related to Clexane because Care told me to start taking calcium this month with Clexane which I hadn't been before. Apparently if taken long term Clexane thins the bones and ofcourse it only takes me one month to thin my bones.....i feel like i am falling apart and I haven't even begun!!! 

 that tomorrow i won't react to menopur and can continue at least......
happy weekend everyone
xxx


----------



## Diane72

Lalaby,

Sending you lots of     Poor you!

The one thing I would say is do put your health first. My friend had OHSS and had to cancel a round & was so disappointed and now she has a baby girl after cycling a couple of months later once everything had calmed down, so it can be worth the wait. I actually can't understand why they would have you take any more menopur, there are lots of other alternatives.

Re:the clexane, none of my other clinics or the NHS reco'd calcium supplements while I was taking it, so I never took it in my last 4 rounds and had no issues. 

Sending you lots of hugs!

Diane x


----------



## ells

Lalaby,   I hope everything settles down  hunni.  Like Diane said I dont understand why they havent changed your meds   .  Did you ask them about it when you went it?  Re Dr G, he was really quick replying to my email but I dont think thats normal so I would ring the clinic and get him to call you back if you havent heard from him by 10.30am!

Hi to everyone else   .  Thank you for all your well wishes   , still not feeling right I am   that the antibiotics are starting to work as the pain in my back has eased off.  I am taking my acidopholus (? dont think I have spelled that right   )  over 2 billion one !!!  I suffer terribly when on antibiotics   but so far so good   .  Hope you all have a great weekend, Lalaby I hope you get good news hun .

Ells


----------



## lalaby123

Thanks ells and Diane they considered all options but as my symptoms had settled wen I was there and because menopur is the most natural of the drugs they thought they test it out today and if I get a reaction then swap maybe 
just had my injection so hopefully no reaction I am reading up to see maybe my swollen face/ lips is reaction to aspirin 

Ells hope the AB do u good and u feel better soon 

Morning to all xxx


----------



## lalaby123

Ladies just reading dr beers book again.... Both prednisolone and clexane hav bone thinning effect and can cause osteoporosis he recommends taking calcium supplements wen taking these ... First I heard of it was wen Care told me to take calcium alongside clexane Wen I start this cycle and now that my front tooth has hollowed out I see why!! So stock up on calcichew girls xxx


----------



## Donkey

Morning 

Sorry that people are feeling poorly    lalaby the back of my tooth fell out a few months ago, it's horrible isn't it!!!  

Hi Mag and Anna...PR girls  

Diane I work in Ware, not too far from Hoddesen (sp?), I can understand you avoiding the M25 on a friday  

Cath great news you're feeling sick (IYKWIM)  although I hope it's manageable and not taking over  

On the SP/LP debate...I've always been on SP because of severe endo and large ovarian cysts...saying that on this cycle and my first I have had zoladex (monthly implant to put you into the menopause) which is really a very long down regging.  I have my last implant on 9th Nov and then have to wait for a bleed to start stimming.  Last time it took 7 weeks.  My egg count has decreased each cycle and quality has varied.

Take care

donkey
xx


----------



## lalaby123

Dr g called me bless him he said if I continue with cycle today depending on my reaction to menopur we will still do ivig on Monday but if not then no point obviously as for calcium he said yes take it but it takes 6 months for the bone thinning effect so maybe I was just unlucky or a coincidence
now I am waiting for reactions after this mornings inject and ofcourse I feel tightness on chest but that cud be just from being anxious ohhhhh it's never easy


----------



## Sprinkles

Hi ladies

Lalaby am really hoping you're ok and dont have any more reaction, everything crossed for you, as Diane says though you have to think of your health first sending you lots of  .  

I've not been told to take calcium either when taking clexane, will ask DrG next week.  Have to say my bones are cracking and creaking a lot more than normal and I'm not even on it at the moment, maybe thats just my age I have to remember I'm not 18 anymore  

Ells hope you start feeling better soon honey x

Nothing much to report from me really rang MFS on Friday to see if notes had been sent over but they havent (surprise surprise) but they said not to worry.  I'll be back on the phone on Monday chasing.

Hope everyone has a great weekend x

Oh also Choice if you are reading hun, really hope you're doing well and we all still miss you greatly on here


----------



## Han72

Jaysus Lalaby poor you!    But I don't understand why they don't try giving you a different stim drug instead  Sending you LOADS of          and           and          that they can get this allergic reaction under control. 

Sorry no more persos DH nagging me to get off here! 

Love to all!
xxx


----------



## Red6

Dear Lalaby,
I am so sorry you are having a dreadful time of it - allergic reactions are very scary. I hope they can change your meds as tightness in the chest area is not good. As Diane says your health is the most important thing. Take care, hun                    


Peanuts - are you ok? did you get your results faxed through xxxxxx


----------



## mag108

Diane: Really sorry to hear that your sis cant be a surrgoate cos of her being pg. It is such an upsetting thing dealing with all of this. An d you are right, on the whole I would say 99% of people, family, friends etc really dont 'get' it what so ever. But I dont think it's possible to really get it without having being through it. Still, you kind expect some imagination/empathy/awareness from some people. And I really know what you mean about and the loss of 'a family life'.... I really really feel that. We have Dh's son every second weekend which is lovely but then its a bitter sweet exp. as we are then exposed to very family orientated stuff like having to go along to kiddies parties and do kiddies stuff and I feel like a fake and a failure as a woman. Sending you mucho      for your 2WW

lalaby123: sorry to hear you have been having problems and I really hope they have been sorted. Glad Dr G got back to you


HI Donkey! 

Hi sprinkles 

Nix: HI! 

Ells: Hope you are feeling better

So ells said it was ok for me to post my results on here. I would really appreciate your thoughs.  Have had that horrible sinking feeling of ....this may not ever happen for us now (at 40 I have other odds against me). 

Got them Weds and am planning on having a phone consult with Dr G but am waiting to get my NHS bloods back so he can see those too (M/c test results FINALLY arrived today)....so may not get to speak to him for a week or two.
I understand my NK's are raised but not sure if it will mean Ivig or intrapilids

NK
50:1 = 17.4
25:1 = 12.2
12.5:1=5.51
IgG conc 12.5  50:1 = 9.9
IgG conc 12.5  25:1 = 8.9
IgG conc 6.25  50:1 = 10.2
IgG conc 6.25  25:1 = 7.2
%CD3                                 *94.8
%CD19                                1.0
%CD56                                2.8
%CD19+ cells, CD5+             22.2


LAD: (I know this is bad)
Flowcytometry    NEGATIVE
(T Cells) IgM+    8.9
(T Cells) IgG+    11.1
(B Cells) IgM+   12.8
(BCells) IgG+    13.2

50:1 w/intralipid 1.5 mg/ml       25.9
25:1 w/intralipid 1.5 mg/ml       15.3

TH1:TH2 intracellular cytokine ratios

TNF-a:IL-10 (CD3+CD4+)        15.5
IFN-g:IL-10 (CD£+CD4+)          2.3


DQ alpha
0102, 0201  and 0102, 0505

dont seem to have results for MTHFR 


Many thanks
X


----------



## Red6

Dear Mag - I am no expert but I think IVIg works better for your NK cells as the intralipid test result shows it does not reduce them to under 15 which I think is where they need to be.

I am sure someone will come on and advise more fully xxxxxxx


----------



## lalaby123

thanks everyone for the well wishes....not much progress here sadly I was supposed to take another 75mg of menopur if symptoms disappeared but as much as I tried to convince myself that the symptoms were from anxiety and tried everything from meditation to walk in the park to get rid of them unfortunately it is still there although nothing serious it is only mild just feel tightness in the chest and keep having to sigh anyway decided not to take the second dose and play it safe, the nurse at Care has been very good and I can call them any time I want she said to take another 75mg tomorrow morning and then i will go and see a consultant on Monday when I was due for my first scan.....I have lost hope for this cycle already as with the stop and starting of the drugs and the low dose I probably won't get many eggs but I rather carry on than abandon the cycle as otherwise I will be shipped back to NHS clinic for next month which I don't want....

Mag, I'm no expert but your results are not too bad, you have slightly elevated NK cells and activity but only slightly unfortunately it doens't respond well to intralipid so IVIG is better for you. Your LAD is low which means LIT am afraid I am not sure about the DQ alpha stuff so I let someone else comment on that....your tnf alpha is ok as well so no Humira yippeee 
all in all your results aren't too bad and hopefully should respond well to treatment

hi to everyone else hope everyone's having a nice week, gotta go serve dinner now xxx


----------



## mag108

Really, big Thanks for your replies. Its great to that you guys know so much. Have Dr Beers book and going to try and read some of it again (did read some in realy sept but my oh my is there a lot to take in)

.....reassuring to know that you think NK cells arent that bad but seems like I am lined up for all the expensive stuff...(suspected as much) I was hoping to avoid Ivig (finances) ....(and LIT).

One positive thing is DH got involved unprompted and was supportive, saying that we will do whatever it takes.

Lalaby: you poor thing. Really hope things settle down. Will they not give you a differnet protocol. I know others have asked?

I am in Manchester too by the way. Gather its St M's you are currently not at?!
I didnt get any NHS cycles (something to do with my cons not putting me on a list and then it being too late).


x


----------



## Sprinkles

Hey Mag

Looks like your LAD levels are low for your B cells which are the most important so guessing that Dr will recommend LIT for you and definately looks like you have at least one match with 0102, so possibly you could get away with DH LIT or maybe he will recommend donor LIT.  

Your NK cells dont see too high to be honest, but your CD3 cells are high but these can be treated with a mixture of steriods and IVIG/intrapilids.  Looks like you have a better reaction to IVIG rather than intralipids.  

Also looks like your TNF isnt too bad either, so a mixed bag hun but Dr G is the expert and will recommend the right path.  Good luck xxx

Lalaby, so have everything crossed for you hun, dont let yourself get poorly, I know you want to keep this cycle but please please dont let yourself get ill, you know having an allergic reaction to drugs no-one can predict so doesnt necessarily mean you will lose your NHS shot, there should be some consideration from them here.  Look after yourself mrs xxx

Me just watched Saw III am I stupid?  Is it me and my age but are horror films just way gory than they used to be, I remember not being able to sleep after Nightmare on Elm Street let alone this!  So need to watch something nice, an episode of Greys Anatomy on the cards I think I need a bit of Dr McDreamy to stop me having nightmares


----------



## mag108

thanks sprinkles
hope you sleep ok after saw111.
I cant do horror, never could, total scardy cat!
x


----------



## Diane72

Good morning everyone  

Sprinkles- your post made me   I am still haunted by Children of the Corn and Halloween as I watched them far too young and I've never watched a horror film in my adult life as I think I never quite got over them! My little sister was a huge Freddy fan though. Hope you got some sleep!

Mag, sending you     too. I think everyone else has already given you an interpretation. What I would say in addition though from experience, is my NKs started at 16.5 and I only treated with prednisolone to start with but with each successive miscarriage they have gone slightly higher, so in retrospect I wish the clinic had treated with IVIG and/or intralipids the first time instead of waiting until my 4th round (financially and emotionally speaking it was much more costly to have so many miscarriages). Also so you know like you my one parameter which has been consistently high is the CD3s, Gorgy said not to worry about that one too much (but of course I do). So even if slightly elevated or borderline, if I had my time again I'd be insisting on comprehensive treatment early on. Also looks like you need LIT as everyone else has said.

Lalaby, sending you lots of hugs   I hope things get better for you, take care of yourself.

Ells, hoping you are feeling a bit better?

Hugs to everyone else,   

Diane x


----------



## deegirl

Hi Girls
Myself and my hubby have our first appointment with Dr next Monday (2 Nov), anyone else going to be there?  I will be flying into Gatwick airport and getting the Gatwick express to London Victoria but have no idea how close that is to Dr G's clinic or how to get there!!   I'm sure I'll figure it out when I get a map but thought I'd ask you ladies as I know many of you have been before and probably know London better than I do!  Thanks! 
Dee


----------



## Han72

Hi Dee

I usually either walk north from Bond Street or Oxford Circus or you can walk up from Regent's Park, it's sort of inbetween the 3... no more than a 10 min walk from any of those stations (I don't think but then I'm always in a bit of a daze when I'm wandering around there on my way to an appointment!) Oxford C is probably best cos that's already on the Victoria line so you can jump straight on the underground at Victoria

http://www.streetmap.co.uk/map.srf?X=528546&Y=181604&A=Y&Z=110

Oh hang on I just looked at TFL journey planner at apparently it's a 20min walk from Oxford Circus? Weird it never seems that long and I didn't think I walked all that fast!

http://journeyplanner.tfl.gov.uk/user/XSLT_TRIP_REQUEST2

Hope this helps hon!

xxx

/links


----------



## Ourturn

Lalaby - how are you feeling today? What a nightmare!   I have allergic reactions to beans (baked beans, kidney beans...yes really!), insect bites and I even had an allergic reaction to a drug killing off a parasitic infection! So I do believe you can have allergic reactions to natural things. Dr Q was interested in the fact I had allergies, when  I went for my uterine biopsy. I suspected my nks's would be high and I was right. 

Out of curiosity who else has immune issues AND allergies? 

Mag - glad your dh has come around...hope mine does too! Hopefully you can get a treatment plan now  

Hi Donk's and Nix  

Sprinkles - saw 3!   I can't do horrors! 

Evening all - 4 more weeks until I see Dr Gorgy...groan! How soon will I get the results back?

Anna x


----------



## deegirl

Thanks Nixf01, that's a great help.  I didn't even know those websites existed so I'll check them out!  Thanks again  



Dee


----------



## Diane72

Hello All  

Sobroody, I actually don't suffer from allergies at all, no hayfever, nothing. However, I do seem to be very susceptible to gum disease and have weak gums that need persistent tending to/visiting the dentist etc. so maybe we all have different issues/susceptabilities that result in the same thing.

Dee, if I am on the train I also head for Oxford Circus tube station and as Nix says it doesn't seem as far as the TFL website says. If you do go to Oxford Circus, head towards 'Debenhams' store on Oxford Street (ask anyone and they'll point you in the right direction as it will depend which tube station entrance you come out whether you turn left or right) and then if you go into and straight through Debenhams and out of the back entrance you'll see Wimpole Street just across the road slightly to your left.

Hugs to everyone else  

Diane x


----------



## Saffa77

ladies sorry just a quick one before im off to lONDON tomorrow to see Dr gorgy - what would be neccesarry questions to ask him??

Thanks ladies

Soniax


----------



## Ourturn

Sonia - can't help but would be interested in any response 

Re the calcium thing...my understanding is that its best to build up your reserves as much as possible. I new heparin COULD decrease bone density but didn't know prednisone did too?   I had a bone density scan at work and my density was 91% of where it should be for my age which I was told is not great so I should work hard to make sure it doesn't drop any more....was told to drink a pint of milk and eat a yoghurt per day...she said its much easier for the body to absorb calcium from food rather than supplements. Sardines (with bones) are a great source of calcium too. And remember to make sure the diary products are organic. 

Anna x


----------



## lalaby123

Anna - thanks for advice re calcium, i bought some calcichew and will continue eating lots of yoghurt

Saffa - I may be at Dr G's in the afternoon depending on how my scan goes in Manchester first thing in the morning....re questions to ask:

-what does he think are the contributing factors for your failure so far
-what tests he thinks you need
-what will these determine
-what will be the treatment/ cost
-how will the treatment help you succeed
If you have time to kill, Marylebone high St nearby has lots of shops/cafes/restaurants

Thanks everyone for checking up on, yesterday I only managed to take 75mg of Menopur as still had mild tightness in chest and didn't want to push it, it is hard to tell if I am really having a reaction or if its more of an anxiety attack following the intial reaction.....today I have been better had slight tightness after first dose in the morning but I have been able to take one more dose in afternoon and so far so good. I am due in to have a scan tomorrow morning and hopefully the low dosage hasn't stopped the follies growing. If all goes well and they continue my treatment i will then go down to Dr G in London and get my first dose of IVIG. If they want to change my drug, is there one that is better than the others out of Puregon, Gonal-F and Fostimon? I am 39 but good AMH if that impacts the choice.

hope everyone has had a good weekend
love to all
xxx
L


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## deegirl

Great directions Diane, thanks!  It will hopefully make my journey a little less stressful!  If both you and Nix would go towards Oxford Circus then that's good enough for me.  Hope all is well with you, you've been through a difficult time, really hope it works out for you this time.  I've had several early losses too but much much earlier than you.  Hope Dr G can do something for me.  
Dee x


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## deegirl

Just a wee question for Diane and anyone else who has experience of LAD testing.  

I've been pregnant before but literally only for a few days each time before it ends.  If I got Dr G to test me for LAD would it still be negative because I've only been pregnant for a few days or could it be positive?  

I guess what I'm thinking is if everyone has a negative LAD unless they've been pregnant before how does Dr G know if they definitely need it??  

Thanks
Dee x


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## lalaby123

Hi Dee, I had a positive LAD result with high B and T cells so not everyone gets a negative results, as far as we know I have only been pregnant once and miscarried at 6 weeks although I think I have been pregnant a few times and body rejected it just before period.....i hope this answers your question


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## mag108

Dee 
Good luck at Dr Gorgys tomorrow.
X


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## Diane72

Dee, 

Your thinking is right if someone has NEVER been pregnant then you would expect the LAD to be negative, but this is not strictly the case for you if you have been pregnant but had early losses.

Therefore, I think it is worth asking Gorgy the question of how long you need to be pregnant before you expect the LAD to raise sufficiently and is it related to how long you remain pregnant for. 

Also the question I didn't ask but in retrospect think I should have is would it be cumulative i.e. would you expect to have a higher LAD after several vs 1 chemical pregnancies.

(Lalaby if you have been pregnant and m/c at 6 weeks then if you're body is doing 'what it should do', you should have a positive LAD, which is what Gorgy is testing to check i.e. is your body triggering blocking antibodies when it gets pregnant).

Saffa, I think Lalaby's questions are a good start point. The main issue areas can be: hormonal, womb lining, chromosomal, immunological, thrombophilia perhaps get him to explain the whole process of embryo formation and implantation and each of the factors that can go wrong and work out from there what you might want to investigate.

Lalaby, the only way to know which drug works best from you would be from regular blood tests. In my ARGC rounds they did daily blood tests and modified the combination of drugs and their doses based on your blood results. Although avoiding one that you are allergic to I think should be one of the most important criteria of choice. The stimulation drugs are classified into generally FSH only (e.g. Gonal F, Fostemon) or FSH with LH (merionel, menopur) if that helps. Different clinics have different preferences as to which drug in each of the classes they use.

Hugs to everyone else,

Diane x


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## lalaby123

Thanks Diane

good luck Dee bear in my dr g isn't the mist talkative person so u hav to dig for answers to your questions and concentrate as he gives short quick answers but he is good and will do what is needed 
also make sure u giv him the whole picture as in tell him about any unrelated diseases allergies Candida infections etc as it can all be cos for raised nk cells xxx


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## Han72

Hiya

Lalaby  really hoping that the reaction calms down honey!  As Diane says the scan will show how well you've been reacting to the low dose of menopur and as she says the nearest equivalent to Menopur is Merional as they both contain LH as well as FSH, however it's so similar that I wonder if it would still give you an allergic reaction...  Your Puregons/Gonals and Fostimons are FSH only but which is best for you will depend upon your own personal levels. I personally do better on Menopur/Merional, others do better with one of the FSH only stim drugs, only time and the scan will tell.    that your scan goes well today and that they find the right combination for you!  

Diane/Dee - I asked Gorgy that question and have also heard from Dr Geoff Sher at the SIRM clinics in the states that you wouldn't expect to see a positive LAD in a woman who's never been pregnant for longer than 6 weeks, so I get the impression that chemicals "don't count" as it were, although I didn't specifically ask about the cumulative effect of several chemicals. TBH I get the impression that there's an awful lot of guesswork involved in the whole LAD/LIT thing so it's something that's done "just in case", particularly if you've had one or more m/c after 6wks AND -ive LAD, rather than, "this will definitely fix the problem". After all if -ive LAD is normal if you've NEVER been pregnant then how does anyone get pregnant in the first place

Saffa and Dee - good luck for your appts today!   

Hiya Mags and Dinna  - PR posse in da house!   

Love and luck to all!

xxx


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## Ourturn

Nix - Of my 7 miscarriages, the latest I got to was 7 weeks, x1 at 6w + 2 and 6w + 1. Does this mean I should have a positive LAD?


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## Han72

Hiya Dinna

yeah that's my understanding, if you've been preg for 6 weeks or longer then your body should have started producing these antibodies so the logic goes that if you don't have enough of them then maybe that was a contributory cause of the m/c  Thing is I wonder how accurate that 6 week thing is. Maybe you actually need to be pregnant a bit longer to start producing them...?  I dunno and I don't want to upset anyone on here who's had the treatment or is considering it and I know Dr G swears by it and he obviously would have done his homework on the subject, but it just doesn't seem quite logical to me...

xxx


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## lalaby123

Hi girls I hav had my scan and so pleased I burst into tears looks like I hav responded well and am nearly ready for egg collection! I cudnt believe it as I thought I had all of this week to stim they said I cud change to gonalf or stay on two amps of menopur given I only hav one or max two more days of it and I was ok with two amps taken seperately yesterday we decided to stick with it now that my bodys got used to it.... So it's all go and I am now on train down to London for ivig I hope I won't react to that and it will do it's trick 

Dee and saffa if u r there after 12.30 I will be in the back room good luck good luck with your appnts 

Nixf thanks for info on the other drugs xxx

love to everyone else xxx


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## Diane72

Dee,

I had a 'weak positive' from 4 miscarriages at just around/after 6 weeks (longest 6 weeks 5 days), so have done the LIT to try and strengthen it. 

It may well be that each person is different and its not one factor but the accumulation of several factors that just tips us into miscarriage. 

I've tried nearly everything else, so LIT was 'worth a go' for me, in retrospect I wish I'd gone for a 'full-up' treatment of every possible risk factor earlier (as it would have actually ended up cheaper then paying for numerous rounds of ICSI) but these things are easy to learn in retrospect and a personal choice, there are no right answers.

Lalaby, I'm over the moon for you!!!!!!!!!  

Diane


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## Han72

lalaby that's fantastic news! And how great to have such a good response on such a low dose! Good luck with the IVIG honey! They should give you an anti-histimine before they start the drip anyway and they know about your allergic reaction to menopur right? Although it might be an idea to mention it again when you get there.  All the best hon and congrats once again!

xxx


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## lalaby123

Thanks Diane and nixf I am so happy I am no longer afraid of ivf and even if this one doesn't work I know now I can repeat and it's not so bad and it's over so quick on the short protocol I highly recommend it to anyone who struggles on the long one xxxx


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## niccad

Wow - so much has happened over the weekend... just trying to catch up. 

Lalaby - I'm soooo happy that the scan went well. The symptoms you've had sound pretty scary so it's great that the lower dose has given you a nice number of follies... Good luck for the next scan.

Dee - I'm going to at DrG's on Monday 2nd... I have a 9am appointment for intralipids. I've no idea where he does this but our paths might cross. I always walk from Bond Street as it's only about a 5 mins walk.

ATM - well AF was due last friday for my FET cycle to start and, of course, it hasn't come yet. I'm usually really regular so now being day 31 it's all a bit odd. Of course I was secretly praying for a natural miracle but the test said 'no'...   If it's much longer I'm worried I might have to change dates to start prednisolene, clexane and intralips... 

Does anyone know the general procedure for weaning off prednisolone. I thought you could just stop if the cycle was unsucessful, but now think this isn't the case...?

Hi to everyone else & sorry for the lack of personals.
Nic xx


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## lalaby123

Niccad hope AF comes soon or not come with a natural pregnancy! 
Re prednisolone I Am not sure all I know is that u can't suddenly stop and hav to taper down the dosage over a few weeks xxx


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## Ourturn

Niccad - with this last pg I was on 25mg and weaned off in just over a week, 2 days at 20mg, 2 days 15mg, 2 days 10mg, 2 days 5 mg 

x


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## deegirl

Hi Girls

Diane, Lalaby, Nixf01 thanks for the advice regarding the LAD.  If my reasoning is correct then my early losses cannot be related to a negative LAD because it wouldn't rise to a positive reading until around 6 weeks, am I right?  Mmmmm I wonder what the issue is then.    

Diane - hope things are good with you.  

Lalaby - all the best for your egg collection, I'm so pleased that things have gone well for you!    

Thanks to everyone for good wishes for appointment, my appointment is next Monday (2nd) (not today).

Nic - would love to meet you but probably unlikely as our appointment is 11AM and you will probably be close to the end of your intralipids transfusion.    As for your question re prednisolone I was taking 25mg and was advised by my clinic to take 4 one day, then 3 the next, then 2, then 1.  I think if you come off immediately it can cause your heart rate to race or something.  

As for me when I sent Dr G an email several weeks ago to summarise my situation he said that I would need to have the test to determine my antibody level against my husband HLA antigen.  I had a look in Dr Beers book to see what this was and thought it was the LAD test, anyone know if this is correct?

Hope everyone else is well and seeing light at the end of what can be a very dark tunnel.  

Dee x


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## bluprimrose

Hello all

Hope you are all well.  Someone on another thread pointed me in the direction of this thread and i'm hoping that some of you knowledgeable ladies may be able to help me please.

As you can see from my signature i have had 5 txs - 4 fresh and one frozen - i've had no success so far and the nearest i've got was last time when i sadly had a biochemical pregnancy - i had a very early miscarriage and my hcg levels only reached 9.  

For my last 2 cycles i have been on aspirin, prednisolone and clexane - because of my past failures, i have not had immune testing done.  I am due to start my next tx very shortly, in less than 3 weeks and i want to make sure i'm doing everything i can to help me get pg.  One consultant told me there was no need to have any bloods done and to stay on the aspirin, clexane and prednisolone but i went to see another who felt i shouldn't be on them if i don't need to be so he sent me for bloods for: TEG, APA, fasting & insulin resistance, factor V & MTHFR (have remembered these off the top of my head so could be wrong about the names of the tests!).  I am waiting for the results.

No-one has suggested i get tested for NK cells and i know there are about a million and one other bloods that can be done.  I just wanted to ask your advice and also wondered whether anyone has had IVIG and what people think about it.  I did think i was doing everything i could be doing to help me get pg and now i'm confused as there seems to be a never ending list of tests available.  It's also confusing when a consultant you trust says have no tests when so manu ladies on ff have had loads.

I also saw a comprehensive list of blood tests that can be done - immunes etc. somewhere on ff but am not sure where - can anyone point me in the right direction please?

Thank you thank you! (in advance for your help).

bpxx


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## Diane72

Hello All,

Dee, I beleive it can still be the reason for early losses (I imagine your body's protective response needs to kick in straight away regardless of whether the blocking antibodies have become 'detectable' or not so don't get fixated on the 6 week thing). Also have you had your immune/thrombophilia profile tested? This can also cause early loss. 

Re your question: It would be DQ Alpha the LAD test (and DQ Alpha for you and DH), however, I would recommend looking at your full immune profile aswell, so do discuss it with Gorgy. Also consider testing MTHFR and karyotyping if you haven't already done these.

Niccad, yes you do need to taper the prednsiolone off, I am at work so don't have exactly what they reco. with me but I'm sure its more similar to what sobroody was reco'd (i.e. a bit slower than what dee's clinic reco'd) 

BP, I'm guessing you're with the NHS based on the tests you are being sent for (?). I'd reco. going to see a private clinic for the immune tests as most NHS consultants will not do them. My one bit of advice for this journey is you have to take your treatment in your own hands and become fully infomed and make your own choices. I have had IVIG the last time but unfortunately I still miscarried but this time round I'm doing intralipids and LIT. If you haven't seen it yet, get yourself a copy of Alan Beer's 'Is your Body baby Friendly'.

Hugs to everyone else,

Diane


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## lalaby123

BP sorry to hear of your ivf failures so far if I wer u I wud make an appnt with dr g straight away to giv u time to hav the full Chicago tests done and results back in time Befor your ivf cycle so that u can hav immune treatment alongside if it shows something and in the mean order the book by dr beer from amazon 
with dr Gorgy u can do your ivf at your clinic and he just does your immunes or u can do both with him

re ivig I  currently connected to my first drip at dr g and so far so good just will be poorer afterwards!


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## blueytoo

Hi everyone

I finally got round to calling Bupa today and getting my authorisation number so am finally off to see Dr Gorgy on the 10th November. Cant wait to get my tests done - I really need the intralipids assay to show that intralipids will work as IViG only brings my NKC down to 18/19 which is nowhere near good enough.

Claire xx


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## Red6

Lalaby - thats great news, short protocol sounds ace - no faffing around just straight to it   Def would like to try this next time.

Diane - How are you feeling? Was that you back at work today? I was interested in your earlier post about your high CD3s and how they dont appear to go down. I have high Cd3s but no raised NK cells so was planning intralipids to see if that would make a diff to them but it might just be a waste of time - feel like I am properly clutching at straws. Have decided on the LIT for neg LAD but no idea if this will make any difference either as I have never been pregnant so its bound to be NEG  

why is it all so complicated  - booked in for a hysteroscopy b4 xmas and was going to ask them to laser away my endo b4 next cycle while they are at it in case thats the reason for all the pelvic pain I get but again no idea really if any of it will make a difference xxxxxxxxxxxxxxxxxxx


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## Sprinkles

Red6 ~       that boss, tactlessness is obviously his top skill!!!

Lalaby ~ great news hun, good luck for EC and lots of eggies x

Just a quickie from me need to get stuff organised.  Had a bit of a flip today where new clinic have only just received notes from my ever efficient NHS clinic, and didnt think there was enough time to get me in for tx this month or whether they had any spaces, which meant I would miss next month and would have to wait for the month after, which I was then told would also be too late as the start of the protocol would mean potential EC at Christmas so they wouldnt start that either so was looking at the whole thing being called off and it being the end of the line for us as Christmas also denotes my birthday after which they wont treat me NHS  .  So spent a nerve wracking few hours waiting for a call to say this month or nothing, but thank you god they rang me this afternoon to say they could fit me in and to go on Wednesday, massive huge phew!!!!  This whole thing tires me out honestly!

Anyway down for a whirlwind visit to DrG tomorrow to have bloods done for LAD to see if LIT worked and get a low down on what to take when for cycle, so hopefully catch some of you there.

Big hugs to everyone


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## mag108

lalaby123: I am so chuffed for you!

Feisty: Good for you!

Red6: it is sooo complicated, fell like I could give up my day job just to concentrate on this (I should be so lucky). We can all do without THAT sort of comment, what insensitive narcisstic numpty.

Sprinkles: glad you got the right outcome, its such a rollercoaster

big hello to everyone else.

MAG  x


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## Red6

Sprinkles - hoping your LIT in Athens has done the trick  - good luck with the LAD retest  

Mag - hee hee, he is!! 

xxxxxxx


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## bluprimrose

Girls, thanks so much for your replies.  No, unfortunately i'm not getting my tx on the nhs - i'm too old and too single!  And yes, i agree we've got to do a lot of the work ourselves to make sure we're doing what's best for us - but it can get very confusing! 

Sorry for being ignorant, but what is LIT and LAD?

Am replying from my phone so can't see all the posts so sorry for not replying with your names - i can't see them!

bpxx


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## lalaby123

Hi ladies first ivig went smoothly it took ages as I asked him to do it slowly but it was fine so newcomers do not be worried
there wer two pregnant ladies there which was also reassuring and another lady who will be having ec same day as me so I will be thinking of her I invited her to join us here So I hope she will pop in! 

Sprinkles I am soooo pleased for u that they can squeeze u in good luck tomoro with lit results 

Reds your boss may be getting his wife pregnant easily but he is an emotional retard  

feistyblue Lit is the treatment if u hav low LAD results which is leucocyte antibody detection or something along those lines it is one of the immune tests to see if u produce the right blocking antibodies to protect pregnancy I think I am no expert and u it is a very controversial subject very few doctors test or treat it.... The other two important immune tests are your NK assay and Th1:TH2 ratio if these are high they will attack any growing embryo apparently resulting in ivy failure/ miscarriage or recurrent early loss/ unexplained infertility 

Cath and choice hope u r doing well 

Hi to everyone else xxx
Hi to everyone else


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## Cath34

Sprinkles, I'm glad they have sorted you out. Good luck for the blood results. xx

All ok with me, feeling very nauseous all of the time!!!! Midwife came to see me yesterday so it feels like its really happening now!!! Hopefully will be having an early dating scan soon.


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## Skybreeze

*New home this way ladies >>>>* http://www.fertilityfriends.co.uk/forum/index.php?topic=213275.new#new


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