# Fertility & Gynaecology Acadamy (Amin Gorgy) : Part 4



## dakota (Feb 6, 2007)

New home ladies, love and luck to you all


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## karen (Mar 23, 2002)

Morning all!

Choice / Tokii thinking of you. Hope you can get rid of the fluid Choice and that the ec goes well Tokii.

Question for you all (Cath can you remember) - what dose of clexane between ec and et? Dr G didnt give me any drug instructions so I called yesterday to ask about gesetone and cyclogest but didnt think of clexane and dont want to ring him again. I have 20mg for pre ec and 40mg for post ec but what do I use in between?!

Hi to everyone else

(Very excited about the mirror - something a guy would never think of but I'm suprised Carissa didnt ask for one before!)


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## Cath34 (Oct 14, 2008)

Hi Karen, you up it to 40mg after EC and continue with 40mg until test day but best to split it into 20mg twice a day to keep it constant in your system. Good Luck x


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## twinkle123 (Mar 1, 2008)

Cath - I'm on the same dose of clexane as Karen.  Is it normal to split the 40mg dose into 2 x 20mg? I don't remember Dr G telling me that but then again, so much of my discussion with him is a blank! I just nodded a lot but luckily DH took more in than I did!
Susan
x


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## Choice4 (Aug 14, 2008)

Hi 
Welcome to part4, we are growing!!!


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## karen (Mar 23, 2002)

Mine are in 40mg shringes because thats the way he prescribed them so only one injection possible.

Thanks Cath - how are you feeling? I was thinking the fact that you reacted to the steriods must be good as it shows they are having an effect on you! No?!


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## Cath34 (Oct 14, 2008)

He told me its ok to do it all in one but it makes sense to spread it as its always topped up in your system then. I'm on 60mg and he said also that if you did it altogther at night and had a reaction, the test they need to do needs to be done 3 hrs after inj (which would be in the middle of the night, if bad reaction) But maybe on a dose of 40mg its ok to do it altogther. I'm just trying to do things perfect this time  
5th cycle - its no joke  If doing one shot, do it in the morning? x


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## Cath34 (Oct 14, 2008)

Mine are also in pre filled syringes of 60mg but I inject 1/2 and keep 1/2 for later. Sorry Karen how do you mean I react to steroids and they are having an effect on me? I'm not sure they are really. My bloods show that they should lower but no proof as yet. Is tht what you meant?


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## twinkle123 (Mar 1, 2008)

Just 2 quick questions for you lovely ladies:

1. When I got my list of drugs to get from Dr G on Tuesday, he scribbled them down on his headed notepaper.  Is this enough to take to a chemist or does it need to be written on an official prescription?  I've got an appointment with my GP this afternoon to let him know what's going on!

2. Dr G told me to take aspirin but because of my asthma and heart murmur I've always been told not to take it.  I'm going to be on clexane, predisnolone, gestone and IVIg so does anyone know if aspirin is needed while on those drugs?

Thanks
Susan
x


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## Choice4 (Aug 14, 2008)

Susan
Dr G headed paper is ok, thats a private prescription, so take it to your gp and see what you can get on nhs prescription, the rest you have to pay privately in any chemist

If you are worried about the asprin then don't take it, follow your mind, some clinics don't use asprin, alos speak to your gp about it


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## twinkle123 (Mar 1, 2008)

Thanks yet again Choice.   I'm just getting so confused and worried about everything the more I think about things. Should really stop trying to work it all out go with the flow!


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## siheilwli (Jan 18, 2006)

Choice,

thanks for your help on the previous thread.
Cat
x


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## Maarias (May 4, 2005)

Hi ladies,
I appreciate most of you are ttc, but wondered whether anyone had any experience of an immunes flare up at 16wks pregnant.
I know this is a dangerous time for immunes from doing a search on the site, but my cd19 cd5 went up from 21 to 25 despite an ivig drip (which took five hours!).
Have posted on SIRM thread as well but wondered whether anyone pregnant with Dr. G had any advice.
mxx


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## twinkle123 (Mar 1, 2008)

Sorry, no advice Maarias.  Hopefully someone will come along with some.  

Why is everything always so complicated?  Just back from my GP where I presented him with a list of drugs I've been asked to get by Dr Gorgy.  He didn't seem to have a clue what it was all about and after lots of checking of computers and thinking, he's decided he'll need to speak to one of his colleagues first before prescribing any of it.  

So just waiting for a phone call with his decision.  Also waiting for a phone call from the nurse at the surgery to let me know when she has the right kind of vials in stock so she can do our karyotyping.   Of course, this would all be happening when I'm going back to work next week and can't keep popping into the surgery any old time.

Also some of my pay is missing this month.  Because I was doing the Acting Principal Teacher job last term, I'm entitled to acting-up pay.  I put in a claim for June which should have been in my last pay but it wasn't. When I phoned them, she said my form for July is there but not June.  This has happened before so will have to chase it up when I go back to work on Monday.  

Sorry for the moan.  Just in a 'everything is going wrong' kind of mood today! Combination of IVF hassles, money hassles and going back to work!!!  

Susan
x


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## Sprinkles (Nov 6, 2008)

Evening ladies

Choice ~   that fluid, hope everything sorts itself out

Cozy ~ oh right first thing in the morning off to Boots, Alli here I come….  Have eaten nothing much but soup all week and no signs of weight disappearing.  Unfortunately I have a desk job so spend most of my day sat down which doesn’t help.

Woo hoo on the mirror!!

Susanp ~  I have a heart murmur but have taken aspirin and was fine, is it because of the asthma you’ve been told not to take it?  Maybe best to check out with gp as mentioned by Choice.

Mariaas ~   everythings ok sorry cant help

Hope everyone else is ok.

Nothing to report but just wanted to bob on and wish everyone a good weekend.


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## twinkle123 (Mar 1, 2008)

Sprinkles - yes, it's because of my asthma I've been told not to take aspirin.  My heart murmur doesn't bother me - just get lots of extra antibiotics for EC,etc.
x


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## sarahh (May 20, 2006)

Hi ladies, Susan P, why don't you ask your cardiologist?  That way you will know for sure.  Sorry you having a bit of a down day  

Tokii - hope you got on well today hon.  

Maarias - are you still on Pred? Or have you weaned off it over last few weeks?  I was speaking to a lady at FGA yesterday whilst having ivig who had a flare of NK's after weaning off pred.  She had been having intralipids but just had the test to see that it doesn't work for her so she had gone back to ivig.  Other than that I can't help you, sorry.  

Back to clinic tomorrow at 9am for scan, bloods and intralipids - got the first damn appointment - the only one left tomorrow am - not quite sure what he would have done if no appts because I obviously need to see him!! Guess he would squeeze us all in.  Anyone else in tomorrow?  

Cath - how you doing this eve?  Hope you have a few things lined up this weekend to keep you busy then before you know it will be Monday   

Choice - hope that the fluid is not returning and your lining is thickening up.  Hope you liking NY.   

Hi to everyone else. 

Sarah x


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## Cath34 (Oct 14, 2008)

Hi all, well here comes the period pains tonight!!! Oh no I think it may be all over,   its not. Not feeling great tonight.

Hope evryone else has more pma than me.

Choice - really hope that fluid is going away.

Sarah - good luck for your scan and Intralipids tomorrow.

Karen- hope you are well and resting.

Toki - hope all has gone well for you. 

Sorry if I missed anyone else cycling at the mo. xxx


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## Choice4 (Aug 14, 2008)

Hi girls
I am happy you are doing well
Thanks for asking about that coconut head fluid!!, i am fighting the battle
The Dr thinks that when i start progesterone im, it would go away so, would bestarting tonite!!

Susan p, 
Sorry you had a bad day, i hope they sort out your money which is more important
For the karoytype test you can 
1.either pay, and get it done by Dr G
2. ask your gp to give you a blood form for chromosomal karyotype and take it to your local hospital blood test they would know what bottle to use
3.You can phone the Drs lab, next to Dr g, and tey would give you the bottles to use, they may post it to you or Dr G would arrange for it to be posted to you

Sarah
I am sure Dr G would see you, with or without appointments, i always work in without appointment anyway!!
Hope your scan and intralipids goes well when is EC!!

Marrias
Immune flares up on and off in pregnancy, thats why Dr G, keeps an eye on you and do regular tests, between intralipids, ivig and steriods your level should come down

Cath doing ok!!!

Omni where are you, haven't seen you in a while, try and pop in, here often to share some of your knowledge withthe girls.
How is the pregnancy coming along!!

I saw this thread, about BUPA and AXA PPP, paying for the imune blood tests at Dr gorgy via his partner
If you have the above insurance then check it out

http://www.fertilityfriends.co.uk/forum/index.php?topic=205276.0


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## Choice4 (Aug 14, 2008)

Cath
How many days post transfer are you?
Are sure it is period pain or implantation pain?


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## Cath34 (Oct 14, 2008)

Well no I'm no not sure but I had an awful pain in the middle of night that lasted about half and hour. I think my uterus contracted big time and the pain was severe. Eventually it went but I was bent over in agony. I did have it lsat cycle also on my 2ww. Has anyone else ever had this bizarre experience. It not a dragging pain but intense!! Its gone today but I feel quite pre menstrual and seeing as Ive been here before many many times I've lost all of my pma!!! Sorry to be down in the dumps girls. I really hate this part.


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## Choice4 (Aug 14, 2008)

Cath
I think that pain is a good sign
See link sign and BFP during 2WW

http://www.fertilityfriends.co.uk/forum/index.php?topic=49694.0

I just spoke to Dr Gorgy on his mobile, to explain things so far, he was quite reassuring.
I started progesterone IM injections, hopefully that should take the fluid away!!
Hope you are all doing well!!


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## lalaby123 (Sep 21, 2008)

Cath keeping fingers and toes crossed for you, hopefully the pain is your embryo settling in deeper into the depths of your uterus  

Choice, hope the coconut is drying ;-) and all goes well for you in NY, thanks for link for BUPA cover....

Susan-P at least your GP is very accommodating, mine agreed to do some of the level 1 immune tests but they said no to MHRTH and Karyotyping, i hope they will give you a prescription for your drugs 

hi to everyone else and hope you have good weekend
xxx
L
hi to everyone else


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## beattie2 (Dec 30, 2005)

Hello to you all

Cath- I had a similiar experience on my first immune cycle- a sharp stabbing pain that woke me up in the middle of the night around 7-8 days post EC- I am convinced it was implantation.

Choice- hope your cycle is going well


Sarah- good luck

and best wishes to the rest of you too

Bx


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## Cath34 (Oct 14, 2008)

Choice - I hope the coconut fluid is going with the progesterone? When are you going back for a follow up? Keep us posted. 

I'm feeling a bit better tonight. I cant say its real pain I'm feeling but rather a dull af type ache if you know what I mean!! No other symptoms really. By the way I'm day 8 past blast transfer so embies are day 13 today (sunday) I'm not going to test with pee stick though, I think its best I wait for bloods next week. 

Hi to all fellow cyclers. x


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## Choice4 (Aug 14, 2008)

I would take progesterone IM for 5days then go back and check my coconut!!, on Tuesday
If everything is ok, i would have intralipids

cath
8days post transfer!!, so you may be blood testing sometime next week!!
Goodluck


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## twinkle123 (Mar 1, 2008)

Keeping my fingers crossed for you Cath     Sounds quite positive though that you're 8 days past blast transfer and still no sign of AF.  

Quick question before I tear myself away from this website and go to bed! Is anyone taking a calcium supplement while taking immune drugs?  I read in Dr Beer's book that you should take calcium for bones while taking either clexane or prednisolone (can't remember which one it was and can't be bothered going to get the book!)  The calcium I bought says to take 3 x 800mg tablets a day.  Just wondering if that's the dose anyone else is taking? 

Thanks
Goodnight, Susan
x


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## Choice4 (Aug 14, 2008)

Susan
Yes, you need to take calcium, when on clexaine, to avoid osteoporosis of the bone
3 tabs of calcium a day, thats the dose


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## Tokii (Feb 20, 2007)

Hi Girls,

I'm so up early, don't know why I couldn't sleep, anyway I had EC and had 4 eggs. Dr G and I were both stunned, seems 8 of the eggs evaporated before the day so wasn't expecting any good news yesterday but 3 fertilised and it's been frozen so we don't know the quality and might be in for FET next month while LIT, ivig, intralipid and humira is running riot in my body  . It's been a journey and a crazy one that is. I'll read everyone's posts later.


Cath     next week is round the corner, hoping it's a BFP for you.


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## Cath34 (Oct 14, 2008)

Tokii- glad to hear you got 4 eggs. Its better than none!! Hopefully they will be fine to use. 

Yes 8 days past ET and no af yet, although the gestone does tend to stop my af coming so you never know if its a good sign or just the drugs doing their job. I'm   that the pulling sensation I can feel is implantation and not the dreaded af waiting in the wings. Well we'll soon see!!!!

So Choice you will have more Intralipids over there or did you just have IVIG with Dr G? I hope everything will be looking good for Tues for you.

Sarah , hope you are doing ok?

Susan - how are things with you?


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## Choice4 (Aug 14, 2008)

Tokii
Yeh yeh, 3 out of 4,fertlized that is good news, If i were you,while wating for next month, i would use that time and retest all my level, i know you had LAD with Dr Armstrong, if your level is not high enough, then you have time to go to greece.
This gives to raise all your immune levels to optimum.

Cath
Yes i had 6 bottles of ivig, with Dr G, and now 6 syringes of humaria in total.
But i would  also like to add intralipids, just to cover all basis
I bought the intralipids here it cost onl $20 (yes $20) but I would be paying $500 to have the infusion!!!

Well I am thinking of setting up an intralipds infusion center in my back garden!! for £50 only any one want to come!!Ha ha!!

Karen, sarah, Susan how far!!!


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## Choice4 (Aug 14, 2008)

Hi girls
I saw this post from IPEC on the LIT site, it is encouraging!!

" "Re: LIT TREATMENT NEEDED 
« Reply #680 on: Today at 15:31 »

--------------------------------------------------------------------------------
Hi ladies

Just a update for all the ladies that were on this site from last year and who were so very helpful to me whilst going through my 6th treatment.

Like all the ladies on this site I was in need of LIT as well as lots Of IVIG, INTRIIPIDS, HUMIRA,STERIODS, CLEXANE, ASPRIN.

As you can see I needed a bit of everything. Well with the help of you ladies and the best Dr in the world DR GORGY of Wimpole St I finally managed to get pg with twins. I had a very up and down pregnancy and my babies were born at 29wks and were in hospital for 10 weeks. I am very happy to say that we are all now home and they are doing very well.

The main reason I wanted to write this note was to let everyone know that treatment really can work as it has for me it took us 7 very long years to have our family but luckily it has finally happened.

I would not have achieved my dream without the help and expertise of Dr Gorgy I found him to be a very caring, honest, open minded and supportive doctor. He was the first and only Dr who I got a BFP with and I will always be grateful to him for giving me my babies.

Last of all i wish everyone on this site the best of luck with treatment and I pray it works out for you all.

Best WISHES iPEC (SONIA) ""

http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.new;topicseen#new


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## sarahh (May 20, 2006)

Hi just a quick one from me before I go get an early night.  Been having murderous mood swings today (poor DH!) can't wait to get this stimming phase out of the way .... although then its on to more difficult phases so ......  

Anyway, Tokii - wonder what went on with those eggs hon, but hey, you've got three so you should have a couple to put back on your frozen cycle as they are going to be very young. 

Cath              
            
          
.... c'mon girl you can do it xx

In tomorrow at 12.30 for another few hours of infusion fun - maybe see some of you there? Tomorrow looked quite busy in the diary! 

Choice - good to hear from you in NY   that the prog IM are doing the trick   that you can have frozen transfer v. soon.  

Sarah x


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## ells (Mar 19, 2008)

Hi Ladies,

I was wondering if I could join you?

I have just booked my first appointment with Dr Gorgy for the 8th September at 10am!  It has taken me a bit of time to build up the courage to post here and also book the appointment with Doctor   .  Both DH and I are convinced that the problems lie with me and my stomach issues - they believe I have crones disease (I will find out for sure on Thursday as going into hospital for investigations - again) .    SarahH, you may remember emailing me earlier this year - we are at the Wessex.  

Wishing you all lots and lots of luck and sending you all a shed load of    .

Ells


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## Choice4 (Aug 14, 2008)

Ells
Welcome on board
Crohns dis, is an autoimmune disorder, and with that there may be other immune problems that may be going on with you
In the meantime try and get the book "Is your body baby friendly" by Dr Alan Beer from Amazon, so you can start understanding the immune problems.

Dr Gorgy is very nice, and you have nothing to worry about, you would be able to do all your blood tests thesame day budget about £1500-£1800, for the day, thats including all the level 2 tests, you would need to attend with DH, if you would need to do the LAD test, if i were you i would do all the tests .

I would suggest going to your gp, and doing all level 1 tests, so you would have a copy to take with you to Dr Gorgy, in case he wants to suggest any other test, see list below


My level 1 tests were:

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)

My level 2 immune tests aka the 'Chicago Tests' completed at RFU were:
Natural Killer Assay 
Th1:Th2 intracellular cytokine ratios 
HLA DQ alpha (male) 
HLA DQ alpha (female) 
MRTHR 
Leukocyte antibody detection


Hi all other girls, hope is going well!!


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## ells (Mar 19, 2008)

Thank you Choice   .  I read Dr Beer's book after our last BFN, I couldn't put it down!  It was such a good book and I didnt find it too hard to understand.  So much of it made sense and it felt like I was reading about myself at times!  I had my level 1's done in June - do you think its worth getting them re-done for our appointment?

I have been very lucky and managed to get BUPA to cover my consults and the blood tests.  There was a post about it on the immune board on Friday so I thought I would try my luck and it paid off.

I have told DH that he needs to come to the appointment with me as he needs to have some tests done too - thank you for letting me know!

I do feel as if a weight has been lifted from my shoulders and that we will get that elusive BFP and have a baby or babies of our own .

Good luck wiht your treatment, I saw from earlier posts that you are in NY city.  I hope everything goes according to plan and you will return with 2 beautiful bouncing bubs onboard.

Thank you again.
Ells


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## Choice4 (Aug 14, 2008)

Ells
You don't need to repeat your level 1 tests, just take a copy with you to Dr G.
Also remind him that you have bupa insurance so he can arrange for his partner to complete the forms

I know Dr G, would help you with getting your dreams come true, but you have to listen and follow what he suggests!!

Thanks i am hoping and praying for my bouncings bubs, if my coconut behaves it self!!


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## ells (Mar 19, 2008)

Thanks Choice - I will be sticking to exactly what he says!  I found the last negative cycle very hard to deal with and I dont want to go through that again! We want to give this go our best shot!  I feel a lot more positive now as I know there is help out there.

I do hope that your coconut (  ) is sorting itself out and you will be all set for ET soon.  

Ells


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## lalaby123 (Sep 21, 2008)

Hi Ells

as choice says Dr Gorgy is very nice and you are doing the right thing going down the immune path...you are lucky at least you have age on your side and hopefully with his help you will get your BFP....I have recently joined this board and went to see Dr Gorgy a week ago hopefully getting my results tomorrow....

good luck
Leila


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## ells (Mar 19, 2008)

Thanks Leila   .  I hope that your results are not too bad and that you get the answers you need to enable you to get your BFP.  Are you going up to see him or will him ring you with the results?

Ells


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## Sprinkles (Nov 6, 2008)

Hi all

Well just back from a whirlwind trip to DrG.  Motorways were horrendous since why did the inside line become defunct!!  Really gets my back up, folk, mainly men I might add, just get on the motorway and sit in the middle lane, just sit and sit and sit and sit there.... Anyway sorry rant over obviously you can tell after 8 hours in total sat in the M6/M1 not feeling very chilled.

Appointment with DrG another story though, from an NHS treated person its lovely to sit with someone who actually cares what I'm going through and doesnt look/talk/treat me like another number in the fertility conveyor belt.  We talked about lots of things including LIT and him setting this up himself which as others have said he is definately looking into but dont think it will happen whilst I'm having tx but never mind.  Also discussed humira which now, after saying I wouldnt take it, am going to give it a shot, dont know if I've picked the best time with swine flu and all but hey if you're going to get it you're going to get it.  Finally had bloods done for LAD/DQ Alpha and reactions to intralipids, to call back next week for results.

There was another secretary there today with Clarissa as well, oh and the mirror!  Wow that is a mirror and a half scared myself at that early hour of the morning....

Hope everyone is well UKside and stateside .... off to read the humira thread back later.

Oh yes nearly forgot just rang healthcare at home for a price for humira and they quoted me £750 does that seem reasonable??


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## lalaby123 (Sep 21, 2008)

hi ladies just called Carissa to see if test results are back and she said they were apart from one but she wouldn't let me have the ones that are back and wants me to call back on Wednesday...i tried to bend her arm but she wasn't having it......how frustrating is that i have been such a good girl all past week and stayed calm but now I am dying to know what has come back how can she expect me to wait more knowing most of the results are in her hand grrrrrrrrrrrrrrrrrrrrrr.....sorry had to have a rant 

Sprinkles glad you will give Humira a shot and i hope it will do the trick for you


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## Cath34 (Oct 14, 2008)

Another BFN for me I'm afraid ladies. I / we are absolutely gutted like you wouldn't believe. Where the hell do we go from here?!!! My body must be seriously wrecked!


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## Cozy (Jul 17, 2008)

Lalaby,

I've just phoned and spoke to Carissa and she wasnt very helpful to me either.  

I sent an email to Dr G to see if he would send me an invoice for my tests, so I phoned to see if he had done it or whether she could send me one. She just said phone back tomorrow, I asked if she could leave a note for Dr G or if she could ask him tomorrow and she said "why, cant you phone back tomorrow?"   

I was impatient getting my results back too... I just wanted to know ASAP

Cozy


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## lalaby123 (Sep 21, 2008)

oh Cath Hon....I am soooooooooooooooo sorry :-( 
you must be devastated. Is this the blood test? is it definite? 
I am sending you lots of hugs though I know they will do jack s**t given how you must be feeling


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## Cozy (Jul 17, 2008)

Cath,

I'm so sorry to read your news, I couldnt offer any advice as to where you go from here, but I can send you a big virtual hug  

Life's sh**e and so cruel sometimes isnt it 

Take care



Cozy


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## Choice4 (Aug 14, 2008)

Cath
Hugs Hugs((((()))))))
I am so sorry, i am sure you are devastated and so is Dr G.
You made lovely blasts, I wonder if it is time to do CGH testing, to see if the embs are chromosomal normal.
I don't know what to say!!!


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## Cozy (Jul 17, 2008)

Sprinkles,

glad your appt went well.

I dont envy you travelling down there by car, especially when the traffics bad, I go on the train its much less stressful for me.

From what I have read the price of the Humira you got is very good.

Cozy


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## Sprinkles (Nov 6, 2008)

Cath so very very sorry, sending you            , there are no words apart from we're here if you need us hun xxx


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## omni (Dec 4, 2006)

Oh no Cath,

Are you sure? My BFP did not show up until 14 days past egg collection and it was a very faint line and a very sensitive test I was using. 

You know, this immune treatment only puts us on a level pegging with non-immunies - which means up to 3 goes to get a positive (although most get it first go). It is still possible that the blasts were both chromosomally abnormal and the next go they won't be. This happens all the time with non-immunies. 

The only other thing I can think of you might want to check - have you had a hyteroscopy? 

Really feel for you  

Omni


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## Tokii (Feb 20, 2007)

Cath, I'm so sorry. I'm sure you and DH must be so disappointed. Sending this to you


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## twinkle123 (Mar 1, 2008)

So sorry Cath     Take care of yourself and DH. 

AF started yesterday so phoned my local clinic to let them know we're ready to start our next cycle. She dug out my notes and then reminded me that I've to get a cervical dilation (think that's right!) before this cycle.  I told her I know nothing about this and she was extremely surprised because it's been discussed between the nurses, doctor and embryologist after my last failed cycle.  That useless doctor at my clinic obviously forgot to mention it at my follow up appointment!!!!

Anyway, the doctor reported that my last ET was very difficult because I have a stenosed cervix (I only know this because I read it in my notes when we got them copied - nobody bothered to tell me!) and almost had to give up during my last ET.  

Still waiting to hear back from my GP about whether he'll prescribe my clexane, prednisolone and gestone on the NHS. Hate all this waiting about! 

Love to everyone
Susan
x


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## sarahh (May 20, 2006)

Hi ladies, well egg collection on Weds for me.  Bit confused as always started the cyclogest before ec but Dr G def says after?  Got the old Pregnyl shot tonight and also started clexane.  

Cath -     you know there are no words that can make you feel better.  You sounded remarkably composed earlier bless you.  I am so so sorry for you.  

I do think that maybe a little holiday and then start afresh and think about the chromosone testing as others have said.  It doesn't mean that you won't get there hon.  Did you get an answer about not getting the hcg reading?  You gonna try in a few days just to be sure?  If it was me I'd stay on the meds for a few days and then try another test just in case.  I know you may not want to face doing that but if there was something starting but just too early then you don't want to stop the meds.  

Ells - hi, I have been keeping an eye on your progress on the Wessex board and was sorry about your last BFN.  Think you've been on hols since?  Anyway, I think that you are def doing the right thing before you part with yet more money.  I don't really think the Wessex believe in immune issues??  You can always have tx there whilst receiving immune support from Dr G but I haven't found the travelling too bad.  Crohns is def an auto immune disease so could well explain those BFN's.  

Right, off to sort lots of things out so love n hugs to you all! 

Sarah x


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## ells (Mar 19, 2008)

Cath, I have only just joined this thread but have read your posts, I am so sorry to hear about your BFN.  It really is the hardest journey and only strong people can go through this.  Sending you lots of   .

Sarah, the Wessex were really good about the immune stuff, they do do some tests but have only just started them in the last  12 months.  Sue wasnt anti them at all but did say that some of the issues needed a little more investigation but was quite happy for me to do immunes along side treatment.  We did go on hols, we went off to Jamaica - it was fab just what the doctor ordered.  We are hoping to hear about our appeal for funding and would prefer to stay local as its much easier for both me and DH - I hate being late for appointments etc and getting to London can be a task and a half at the best of times.  Good luck for EC on Wednesday.

Evening to everyone else, I hope to get to know you all better over the coming months.

Ells


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## shaz2 (Mar 24, 2006)

Hi girls,

hope use dont mind me joining in here, just wondering if use think this doctor gorgys would be good for me to see. Ive had 14 mc and im on asprin and clexine as i have anti phislophiod syndrome, im going to st thomas hospital in london no on friday to be checked for lupus. but from what i can see on other forums there is other tests i could get done an perhaps other meds as well...any advice anyone??

shaz2 xx


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## lalaby123 (Sep 21, 2008)

hi Shaz welcome on board...with 13 miscarriages you should definitely get immunes checked. Dr Gorgy can do your immune stuff while you do your treatment at St Thomas's. The other girls here can advise you better but i am having my immunes checked after just one miscarriage as I don't want to go through the IVF roller coaster if there are other issues preventing me getting pregnant.....i get my results today/tomorrow and am a back of nerves.....


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## Cozy (Jul 17, 2008)

Lalababy,

Can't believe you haven't phoned to get your results yet, I'd have been on the phone as soon as I got up  

Are you having them faxed to you? If Carissa wont send them again, just tell her you want to read them before you speak to Dr Gorgy and can you make an appt to see/speak to him re your results. Thats what I said when she wouldnt send mine and she faxed them straight away.




Cozy


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## lalaby123 (Sep 21, 2008)

Hi Cozy, I haven't rung cos she insisted I call back Wed afternoon...I did write to Dr Gorgy himself and explained why I want to know the results they have in hand (have an NHS appointment tomorrow and husband needs to know which day to take off to go down to london again for our review consultation) I haven't heard from him so far not sure how good he is checking his emails.......

as you can imagine i am very tense and nervous. My level 1's have already got a note against them to see the GP and last night I dreamt all night of my results. so my forecast is as follows:
NK's very high
TNF alpha slightly high
LAD ok not need LIT
let's see if they are true!

DH has no idea how I feel and when I told him last night in bed I was nervous (i had already told him earlier my results were back but i didn't have them) he said 'about what?' which made me explode. Is it just him or do men just not get what we are going through? It makes me mad because he is the real baby lover out of us. 
He is otherwise lovely but I just feel like I am talking to a brick wall when it comes to this fertility stuff. Sorry for having a nag........

Cath hope you are holding out OK, you need some time out to decide your next line of action. 

hope everyone else is well. 

xxxxx
L


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## Newday (Apr 27, 2005)

I had my results when I spoke to Dr G it does help to have them in front of you.
Also Omni had briefed me so I knew what to expect this was very helpful.

I sent him an email 2 weeks ago no reply
Dawn


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## Newday (Apr 27, 2005)

Does anyone know what the latest appointment you can have for intralipids with Dr G?
Thanks
dawn


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## superted (Sep 21, 2004)

Oh Cath

I am so sorry things did not work out for you I was really hoping it was your time with those blasts.  

As Omni  think said it might be a good idea to get some chromosals testing done this would then rule this out.

Thinking of you.

superted x


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## Choice4 (Aug 14, 2008)

Higirls
If you are waiting for your results call and ask carissa to fax it or speak to Dr G himself, he always wants everyone to have acopy of their results so it should not be a problem at all.

If you have any problems getting the results let me know!!

Newday ring the practice to check on the latest time you can have intralipids remember it may take 2-3hrs


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## lalaby123 (Sep 21, 2008)

right girls, Carissa called me herself this afternoon and said all my results were in and so she faxed them over to me. I have to go and find Dr Beer's book to see what they mean but here they are if anyone can shed some light I would be most grateful.....

NK Assay
50:1      24.4%
25:1      17.2%
12.5:1  10.5%

IgG conc 12.5 50:1      9.8
IgG conc 12.5 25:1      11.8
IgG conc 6.25 50:1      9.9
IgG conc 6.25 25:1      12.3

%CD3    84.9
%CD19  1.1
%CD56  12.9
%CD19+cells, CD5+    1.0

LAD positive (**** does this mean LIT)
Tcells IgM    1.0
Tcells IgG    69.3
Bcells IgM    30.2
Bcells IgG    93.7

NK Assay w/intralipid
50:1 w/intralipid 1.5mg/ml    15.0
25:1 " "                                12.1

TH1:TH2
TNF-a:IL-10      27.4 (does this mean no humira)
IFN-g:IL-10      17.9


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## sarahh (May 20, 2006)

Just a quickie from me: 

lalaby - no positive LAD means no LIT! Your levels are good.  Think your TNF alpha is within the limit too but can't remember the limit - but I don't think Humira.  So, looks like elevated NK's and you seem to react better with IVIG than intralipids so it may be a dose or two of intralipids.  All in all I don't think they look too bad.  Choice is your expert tho! 

I'm off to get myself ready for tomorrow am - early start.   for some lovely eggs for me girls! 

Sarah x


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## lalaby123 (Sep 21, 2008)

thanks Sarah and good luck for tomorrow xxx


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## twinkle123 (Mar 1, 2008)

Loads and loads of luck for tomorrow Sarah          
Susan
x


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## sarahh (May 20, 2006)

Thanks girls,  Lalaby - oops meant a dose or two of IVIG not intralipids having just said it looks like ivig works better for you!  Duuurrrr......  my mind not up to much this eve  

Sarahx


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## Cath34 (Oct 14, 2008)

Hi Ladies,

I have booked to go and see Dr G tomorrow for a follow up plan.

Can anybody give me any advice on what additional tests I can go for now?
I will do a repeat NK Assay with IL, I also thought about antibody tests especially AntiThyroid Antibody test as I believe this could well be my issue with 0 implantation everytime  
I will be asking for CGH next cycle also but I believe he uses CRM clinic for this and I dont know how experienced they are at this, any thoughts girls?

Lalaby - your results look pretty good to me hun. A shot or 2 of IVIG should do the trick maybe?

Sarah - wishing you loads and loads of luck for EC tom. Enjoy the sedation, I did, the whole day was a blur  

I cant say I am feeling better today after the news yday but I am armed with questions for Dr G so he better have a plan or I will be p'd off!!! My period from hell has started and I know its gonna be a bad one.

Thank you everyone for all of your lovely comments and support, and good luck to everyone.


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## Pinpin (Nov 4, 2008)

Cath - so sorry about your news hun   you did everything you could, this is so not fair   Please don't despair, it will work and quite rightly Choice suggested the chromosomal test which sounds like a logical next step. You will get there  

Sarah - good luck for tomorrow, i hope it goes well   

Lalaby - your results don't look too bad   you certainly won't be needing the full shebang of drugs. You have raised NKs, high CD3 and borderline TNFa (limit is 25 i think).  By the look of this you'll need IVIG as it seems to work better for you, I'm not sure what DR G would recommend about borderline TNFa though  and you certainly don't need LIT. I think Choice will be able to tell you better though as she knows how to read these really well.
Did you have the MTHFR test done?

I went to my GP today to see if she would do the blood tests for LIT with Dr Armstrong and she agreed and gave an appointment to get them done on 15/09 and they should take up to 10 days to come back and DR G said I 'd need to have LIT week before EC which should be w/c 05/10 so timings should be right. She also gave me a sick note to cover the 3 weeks period of tx (i.e. the week before EC to get all the immune treatment with DR G and Armstrong and then the 2 ww). That's 2 more things ticked off my list now I need to speak to work about the time off!

Pinpin x


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## Toffee Girl (Mar 20, 2009)

Cath (and Ladies)

So sorry to hear your news - very disappointing after such an intensive few months.  I am just gearing up for EC on Friday or Sat this week and I have to say that I decided last week we would be doing Preimplantation Genetic Screening for this round - just to get some extra information, especially as I am turning 41 next month.  

Trouble is, our embryos have only ever been good enough to  go back in on Day 3, and for PGS, they take the sample on Day 3 and then like to put them back on Day 5 - good for you with your Blasties.  I decided that they could take the sample anyway, and then put the best ones back on Day 3 regardless, and just use the information for next time, just to check things are Ok.  It's a lot of money though.  I have a dear friend who, after 10 rounds of IVF, did another two with PGS and discovered that things were just not right chromosomally each time and it helped her and her husband move on to the decision to do egg and sperm donation (successfully) in Kiev.  She has encouraged me to include the PGS this time, but also when I was having a low moment, she said exactly what Omni said further up, you need to give it 3 goes if you can.  After going up to London virtually every day for the last week and all the IVs I have to say, 3 goes would be exhausting!

Dr Gorgy, bless him, had to do some ducking and diving to find me a lab that will do PGS - lots of people are on holiday - there were two choices and I think one of them was CRM. Dr Gorgy is less keen on CRM than he used to be as they have put their prices up hugely apparently.  So we opted for the London Fertility Clinic (LFC) who offer PGS via their lab - and LFC is the clinic that Dr Gorgy set up himself and ran for 5 yeras before going to ARGC.  So, we will see!

Chin up.  It's a horrible set-back, but I am sure you will get there in the end!  Sending you lots of these...  

all the best

Toffee Girl x


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## shaz2 (Mar 24, 2006)

Hi girls,

would anyone have an email address for Dr Gorgy?

xxshaz2


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## Sprinkles (Nov 6, 2008)

Hi girlies

Cath ~   hope you get some answers hun, thoughts are with you x

sarahh ~ good luck and fingers crossed for tomorrow   for lots of eggies for you x

lalaby ~ as other girls have said your results dont look too bad and result you dont seem to need LIT

pinpin ~ brilliant getting your dr to do bloods and getting signed off as well at least you can focus on matter in hand.  I'm hopefully going to see my gp for same question on bloods hoping he gives the same answer.

Cozy ~ yeah normally if I go to see DrG on my own I'd go down on the train but DH had to come this time and he has company car so cheaper to drive rather than catch train which would be a couple of hundred quid.  Got upgraded last time as they'd double booked my seat and got first class and breakfast thrown in, was great especially at 5 in the morning.


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## ells (Mar 19, 2008)

Sarahh good luck for ec tomrrow.  I am sure you will get lots of good eggs.  Let us know how you get on.

Cath good luck for your appointment, I hope that you will get some answers and get a plan of attack.

Pinpin, thats very organised! I hope work will be supportive.

Choice how are you getting along?

Hello to everyone else.

Nothing new to report from me .... yet.  I hope to get some answers on Thursday following my scopes - at least I will know whats going on.  Dug out my level 1 results so put them in my file to take to Dr G.  Do you think that it would be useful for me to take my notes from our previous clinic?  

Have a good evening,

Ells


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## lalaby123 (Sep 21, 2008)

thanks girls for your feedback...I have a questions if anyone knows the answer as it will help me decide to go down this Friday or on Monday....
going by my results, will I need to have an endo biopsy or any further blood tests? 
I did do the MHTR? but it doesn't seem to be amongst the results. Because if i don't need anymore blood tests or endo biopsy then we could go down on Friday instead of Monday....

Pinpin I WANT your GP they sound great 3 weeks off work is just what you will need  and how great they did the blood tests for LIT

hi to everyone else


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## Toffee Girl (Mar 20, 2009)

Hello All - me again!

Ells - Sorry - we haven't met properly, and I have to say I am not always on the thread as much as others, but welcome!  Yes, definitely take copies of any other notes you have for Dr G.  When I first went to see him in March, I took copies of all notes plus I did him a summary of all the issues mentioned in Dr Beer's book which I thought were relevant - and bless him, he quietly read the entire summary in front of me and highlighted all the key bits before we really conversed at all!  He is very thorough in that respect.

Sarahh - Lovely to catch up with you in the IV room yesterday. Hope it goes well for you tomorrow  

Omni - so nice to see you again too - and you look so well! 

Choice - good luck with everything across the pond  

Cath - when you next see Dr. G tell him you want to test for everthing !!!  Have you tested Serotonin levels? Dr T suggested this to me at one point over something I mentioned (could have been the night sweats over the chest area I have) and so I said to Dr Gorgy about it.  Dr G wasn't overly keen as there is data that what they treat you with (anitdepressants) are not good for fetus/embryos, but I said I wanted to at least test for everything I could.  I think if your levels are less than 200 its not ideal.  Mine was 197, so I didn't really worry about it, but I have just re-read the list on  pages 111 and 112 of the Book and actually, maybe that does make a difference as I have lots of the things associated with low-serotonin levels - argghh!  


Best wishes to everyone else - is anyone else doing EC this week or is it just Sarah and I?  

Toffee Girl


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## Cath34 (Oct 14, 2008)

Hi Toffee Girl and thank you.

Can I ask if you considered CGH as I believe it is more advanced and PGD? Do you know if CRM or anyone else does this?
Serotonin eh, sounds interesting, Ive never heard of that before. Dr T mentioned Anti Thyroid Antibodies to me as I had bad endo and I know this destroys the early root system of the embryos and judging by my 0 hcg levels I am interested in this also. Its all a minefield!!

Well good luck for EC, I really hope it goes well for you. Fingers crossed. Did the LIt help your levels by the way?


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## Choice4 (Aug 14, 2008)

Hi Girls
It has been busy here, and because of time difference i am just signing on!!

As for me, my coconut has behaved quite well, after 5days of progesterone im, the fluid has gone away and my lining is now 20mm( i wonder if this is too thick) but no Tri layer!!
Would be having my transfer 2morrow under GA, as my coconut is hard to crack!!, and assisted hatching for the embs.

Cath,
I hope you can read this before your appointment 2morrow.
May i suggest also to either call or email Dr T in greece to get his opinion on your case.
As for CGH ( this tests for 23chromosomes ) and there is PGD ( which tests for 12 chromosomes).
PGD is done in uk, LFC is very good, with this, they have an embryologist called yacob, who is good with PGD,.
For CGH, this is new ,it is only done at CARE nottingham in uk,
In USA it is only done at Sirm and CCRM.
More info on CGH
http://www.haveababy.com/?CGH

In your review
You need to look at the following was there:
a) problem with the egg/embryo quality- need PGD/CGH
b)Problem within the uterus e.g Endo, polyp, septum,scar tissue -need hysteroscopy or laproscopy
c)Hormonal or immunological problems - need blood tests
d)Problem with sperm- need sperm DNA fragmentation test
e) Karyotype testing
f) consider 2nd opinion from another Dr
g) Some people may decide to go for donor egg, instead of wasting all the money on CGH/PGD, just to be told of chromosomal abnormality, while some people would like to know if there is any chromosomal abnormality, It is hard both ways!!

Sarah and Toffe girl , susan ,good luck with egg collection

Shazz2
[email protected] 
Dr G's email is below, he doesn't answer that often!!

Lalaby
I am happy you got your results
Your NK assay 50:1 is 24.4%, this should be under 15%
CD3 should be under 85 (yours is 84.9)
CD56 should be under 12 (yours is 12.9)
So borderline here

IVIg works better for you, but that does not mean that intralipds would not help as they work differently

Your LAD is quite good have you been pregnant before?

Your TNF alpha is 27, should be under 30, so no humaria for you

In summary you would need ivig/intralipids, steriods, clexaine, asprin

I don't know your MTHFR results if positive you would need high dose folic acid

Have you done TSH and thyriod antibodies, anti sperm and antiovarian antibodies, antinuclear antibodies,Seretonin, PA1 mutation, antiphospholipid antibodies, endo biopsy for CD57, AMH, and prolactin.

Ellis, pinpin,cozy, omni

Good luck all

/links


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## lalaby123 (Sep 21, 2008)

Choice - you really ought to set up your own clinic once you get your BFP!
thank you for your feedback...it really helps as otherwise I would have to wait till I see Dr G ....I have had some of the other tests you have mentioned but not all...waiting for their results...I am also wondering if I need to have endo biopsy....certainly not looking forward to that one! so glad your coconut has dried up   good luck with the transfer tomorrow I hope it will go smooth sailing and it will get stuck deep into your 20mm!!! lining xxx


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## Choice4 (Aug 14, 2008)

Lalaby
Do the Endo biopsy, it helps to scratch up your lining and makes it respond better to the drugs.

Please someone should contact cath by phone to read this email before her appt.

Yes i would set up my clinic soon!!


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## kara76 (Dec 14, 2004)

i have been following my lovely friend cath and just want to butt in

CGH is now being done in oxford and LWC are currently starting a trial where you can get free CGH if you havent had failed cycles!!!!!! or you can pay for it, i believe the same lab does the actual CGH for both clinics


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## Cozy (Jul 17, 2008)

Hi Everyone,

Sarah good luck for today, I hope you get lots of nice juicey eggs 

Choice, wow 20mm lining, I would have thought that would have been too thick and they would give you something for it. Anyway, I hope your little embies snuggle in tight 

Cath, good luck with your appt. I hope you find a way forward

Lalaby, your result dont appear too bad, nothing that hopefully cant be easily treated

Toffegirl, good luck with your EC Fri/Sat

Pinpin, sounds like you are getting everything organised and your GP sounds very helpful

Hi to everyone else

Cozy


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## omni (Dec 4, 2006)

Lalaby,

I think Dr G will probably recommend a combination of IVIg and Intralipids - as with you, reduction with IVIg reaches its maximum effect with just one dose - and its a very good reduction!. But if you are going to have a 2nd infusion before ET Intralipids could add something. 

Hey your dream was correct!!

Cath, if I were you I'd use your blasts next cycle ASAP while all the immune stuff is still in your body and you just need top-ups. As I mentioned, many non-immunies have BFNs and get pregnant with their frosties. They can't always pick the normal ones from 4 good looking blasts. These 2 may have been abnormal, but the chances are - if that was the case - that at least one of the other two is not. If the cycle does not work then you can consider CGH. Also, have you had a hysteroscopy before?

Choice - Yesterday I was busy all morning then had IVIg in the afternoon. By the time I got home I was shattered (for no real reason). Never felt so exhausted in my entire life. Did not log on. I suspect I may have Iron deficiency. I am waiting blood test results. 

In answer to your question, I did a 3 day transfer so I upped my meds after sore throat on day 6 after egg collection. You mention you intend to do so 3 days after transfer but as you are having blasts that would be equivalent of Day 8 or 9 which would be too late. Implantation could start the day after blast transfer (and even earlier if hatching). I only upped my meds because I got the sore throat BUT if you are going to do it prophylactically (and with all the IVIg in your system I am not sure you need to) I would do it day 5-8 after egg collection (i.e., starting day of transfer).

Lovely to see you Toffee and your gorgeous little boy. I understand why you want another one! Good luck to you - and goodluck Sarah.

Omni


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## lalaby123 (Sep 21, 2008)

Omni - thanks for the feedback it is very reassuring  I wonder if I can start treatment before IVF cycle as I don't think my turn will be until Oct/Nov

Just had first NHS appointment which after having been to Lister, ARGC and Dr G seemed like a joke....very un-thorough if there is such a word! will only do NHS cycle if they outsource it to Care in Manchester otherwise will go private.....

Choice - hope ET has gone well


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## Cozy (Jul 17, 2008)

Lalaby,

if your NHS cycle was at St Marys, I would def advise to either go private or write to your PCT to see if they will let you go to Care. St Marys have a dreadful reputation and I know of a few who have been there and had problems then went private and wished they had done it sooner.

Cozy


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## lalaby123 (Sep 21, 2008)

Cozy yes i wasn't impressed with them at all but hopefully will get to do it at Care but through NHS which will be  real result

Ladies who have had an endo biopsy 
I just spoke to Dr G and he does want me to have an endo biopsy on Monday which I was so dreading. Can you please tell me the truth as to how painful/uncomfortable it is and how quick is it? and how much??

already breaking out in a sweat over the thought of it.......


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## twinkle123 (Mar 1, 2008)

Sorry, can't help you with your question Lalaby. I'm sure someone else will though  

Just back from getting my karyotype blood test done at my GPs.  Still waiting to hear from my GP about whether he'll prescribe all my prescription from Dr Gorgy.  That's almost a week now since we asked so the receptionist said she would chase him up tomorrow.  How long does it take for him to ask another doctor what he thinks!  

My local clinic phoned today too. I've to go in on the 10th September for my cervical dilation. Can't say I'm looking forward to it.    She's letting me start down-regging on day 21 though so count down to the 5th September.

Need to work up the courage to tell my clinic that I'll be on extra medication this time. Do they have any right not to treat me, even if I'm paying privately for this cycle?  I can't really not tell them but I know they don't agree! 

Love to everyone
Susan
x


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## karen (Mar 23, 2002)

lalaby if it what I had, its £150 and like a smear test - hardly felt much.

Dont worry.

Cath / Sarah thinking of you today - let us know how you got on when you can!


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## sarahh (May 20, 2006)

Hi girls,  just a quickie from me, feeling rather tired - those drugs have knocked me out!  12 eggs from me but obviously don't know quality etc. till tomorrow am.  Had nightmares all last night that no eggs in there so tonight expect I'll be having nightmares about no fertilisation - but god willing, I hope there is!  

Well I am feeling really stupid.  I asked Dr G this am about my meds and I forgot what he said so stopped off at his clinic when came out of LWC and asked again and I still can't remember what he said.  He really should write it down for us.  

So if anyone can help me - I think its no clexane today but start again tomorrow; Cyclogest tonight (1 pessary then 1 every eve) and start Gestone tomorrow am?? 

Choice - good luck for ET tomorrow  .  20 mm eh?  That is a nice snug lining!! 

Sarah x


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## Tokii (Feb 20, 2007)

Sarah, wow 12 eggs    they all fertilise tonight. Why don't you give him a phone call and make sure you write it down this time  

Choice, Good Luck for ET 

Cath, how did your follow up appt go?

Hi to everybody else.

I'm seeing Dr G tomorrow to talk about the FET next month. I'm so indecisive, don't know if I should risk it and go for it or wait till I have a new cycle when I don't know. Anyway I'll see how it goes tomorrow.


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## Sprinkles (Nov 6, 2008)

choice ~Wow 20mm thats brilliant, good luck for ET.

sarahh ~ 12 thats brilliant, fingers crossed for fertilisation.


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## karen (Mar 23, 2002)

Sarah, well done on your eggs. LWC is nice isn't it? Pm'ed you re meds


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## lalaby123 (Sep 21, 2008)

Sarah- hope you get some good embryos out of those 12 eggs. You must be pleased xx


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## twinkle123 (Mar 1, 2008)

Well done Sarah. That's a great amount.   Lots of luck to you  
Susan
x


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## Pinpin (Nov 4, 2008)

Sarah - well done 12 eggs is great and i hope they're all top quality and give you some lovely blasts  

Choice - glad your coconut has sorted itself out and is now making a nice thick pillow for your embies  

Lalaby - Dr G didn't suggest the endo biopsy for me and now i wonder if i should have had one too. I did ask him whether there was anything more we could do when we went to see him but he never mentioned that!

Tokii - good luck with the decision making i'm sorry but woudln't know what to recommend 

Susan - I too am cycling somewhere else whilst having the immune treatmemt with dr g and wasn't planning on telling them as it is my NHS cycle and i'm too scared that if i say anything they will refuse us the treatment. Do you think we have to tell them??

Hi to everyone else lovelies

Pinpin x


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## lalaby123 (Sep 21, 2008)

Pinpin, the reason Dr G didn't suggest an endo biopsy for you is that if you have high TNF-alpha then you have to take Humira anyway which is the treatment for NK cells in the uterus so there is no need to do a biopsy as they will be dealt with by Humira, in my case he said if my TNF-alpha is not high then he would do the biopsy .....and since they came back borderline he wants to do the biopsy to decide if i need Humira or not. So you are lucky in a way.


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## Pinpin (Nov 4, 2008)

Thank you Lalaby for the explanation it makes sense, I hope the biopsy will be ok and it's not too painful


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## Cath34 (Oct 14, 2008)

Hi Girls,

Sarah,    well done on 12 eggs hun.   Pray they get jiggy with it tonight and pray for good fertilisation tomorrow.
Did you do your clexane tonight? 

Toffee Girl, - It was lovely to see you today. All the very best for EC, I really hope it goes well for you.

Choice - THanks very much for your post last night. Ive been thinking about you today. I hope ET went ahead and smoothly. 20mm lining - go girl, thats fab!!!!! Let us know how it went.  

Omni - Thanks again, your words echo exactly what Dr G said today, to do blast ET asap next month while I still have the drugs in my system. His words to me were how on earth arent you pregnant? My response was you tell me!!!!   He was very positive and he was truly gutted , I spoilt his run of BFP's1  Anyway I re did my nk Assay and cytokines and he did a Hysterography on me which was fine. (but painful!)
He wants me to start suprecur tomorrow as I will be day 1 and then ET on Sept 11th!!! And me and DH are going to go away to Florida for 10days in between!!! We must be mad, its what we need so to hell with the money!!

Love to all, off to bed now,
Cath xxx


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## Choice4 (Aug 14, 2008)

Hi girls
I am just back from emb. transfer, had 4 blasts !!transfered, 3 hatching,1 none,( all inside my thick coconut now!!) was given photo of the embs, ans u/s of them inside, everything went well was under sedation,($625)
Intralipid yesterday was $550
Went for acupunture before and after $90 each ($180), then did some shopping (mad!!)and then travelled to my hotel by train.
Just chilling now!!
Would be back in London Sat, am.

Sarah, 12 eggs, thats wonderful, hope you had icsi

Tokii what did Dr G suggest for you, have you retested your LAD?

Cath
I am sure the holiday is what you need now!!, i pray september would be your lucky month!!

Susan p, are you sure you want to tell your clinic about the extra med, i think you should ask them what they think, but don't tell them you are using it, unless their response is positive

Lalaby, omni, karen ,pin pin, cozy, hope all is well


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## ells (Mar 19, 2008)

Hi everyone   ,

Congratulations on being PUPO Choice.  Wow 4 embies on board thats great.  It sounds like they are all ready to attach and have some fun in your coconut   .  The shopping sounds great!  I bet the acupuncture was really relaxing.  Hope you are able to chill out for the next few days before your flight back.

Sarah 12 eggs, brilliant.  Hope you are not too sore.  I   that you will get lots and lots of good embies.  Are you taking them to blast?

Toffee Girl, thank you.  Good luck for your EC.

Cath, Florida sounds great.  Its good news that you go straight into another cycle too.  September is a good month - lots of birthdays ... I wonder what was going on 9 months before   !!!  

Susan, I have always been told to say as little as possible to the clinic unless they agree with immune stuff.  A friend is a nurse and she said that it can affect your treatment - which is terrible.  So I would not say anymore then you can get away with, like Choice said test the water and see what they think about immune treatment.

Tokii hope your appointment goes well and that you will be able to make a decision.  

Lalaby, I hope that you can change your clinic.  We have a choice here between 3 but you have to be accepted for funding first - which is a nightmare   .  We are still waiting to hear back on our appeal that we put in nearly 3 months ago!  Good luck.

Hello to everyone else.  Thank you all for your warm welcome to the thread.  
I am going in to have my scope and biopsy's today to see if they can find crones - I am   that they find it this time and I can get the right medication.  I am having it under sedation but last time it was horrible as I was really awake during the hour long    procedure.  I have asked the doctor to use the same drugs as I had for EC in April as I didnt feel a thing  which was great!  Fingers crossed this wont be in vain again.

Hope everyone has a lovely day. 

Ells


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## lalaby123 (Sep 21, 2008)

Ells good luck with the investigations today, i hope you don't feel a thing

Choice - wow 4 blasts!!! I really hope at least one loves coconut and attaches 

Cath - glad you have a plan of action with Dr G

I didn't get a blink of sleep  last night thinking about the biopsy....am i a wuss or what?

Hi to everyone else....


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## omni (Dec 4, 2006)

Wow,

Can you imagine four little Choices running about the place    

Well done!

Septembers going to be a great month!!!  

Omni


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## Toffee Girl (Mar 20, 2009)

Hi All

Wow - so many exciting things going on for everyone!

Lalaby - I had the endo biopsy with Dr G - the one that was sent off to Dr Winger at the Beer centre.  It was uncomfortable but not unbearable.  Generally with that sort of thing its quite good to take nurofen or paracetamol an hour before it if you can.

Cath - it sounds like you had a good meeting with Dr G and at least you can move on really quickly to having another go straight away which is fab.  Am afraid I had not done my homework on CGH/PGS enough to guide Dr Gorgy beyond the PGS thing - but then again, it may be that the CGH bit was not an option this week due to the lab vacation schedules we came up against, so perhaps that's why he did not mention it to me.

Sarah - well done on your 12 eggs.  Hope you get some good news on fertilisation.  I am booked in for Friday at 8.30 for EC now and then more intrallipids at Wimpole Street after (could not cope with yet another trip up to Wimpole Street today to do it - I have been in every day bar Sunday for virtually 2 weeks due to those slightly slow growing follicles.  I am completely knackered)

Choice - so lovely to hear you have got through ET successfully with Blasties and good lining.


Love and luck to everyone else! 

Toffee Girl x


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## Choice4 (Aug 14, 2008)

Thank you all for your well wishes
As for me today is sleep, breakfast, internet, sleep, lunch
Sleep, sleep sleep. Internet!!

Hope you are all doing well, would depart Friday pm, and arrive London Sat, am.
Would see you all soon at Dr G's office

Omni, yes 4 little choices, messing with Dr G's big mirror soon!!


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## lalaby123 (Sep 21, 2008)

thanks Toffeegirl i can tolerate uncomfortable i guess just wish he would knock us out during a biopsy.......good luck with your EC tomorrow hope it will go as planned and you get your lucky egg xx


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## sarahh (May 20, 2006)

Hi ladies,  well my news is that they did ICSI on 9 eggs and all 9 fertilised.  Obviously got to wait till tomorrow for news of how they are dividing etc.  Am feeling ok today, tad bloated and bit of bleeding / brown discharge (sorry tmi!) but ok.  

Toffee Girl - good luck for EC tomorrow.  Make sure you get Dr G to write anything down re: med instructions or anything as you are unlikely to remember!     that your follies have some lovely eggs in. 

Choice - 4 - OMG - you are brave - 4 blasts!  That is (hopefully) one ready made family!  Hope you had a nice day of resting and have a relaxing flight home, sending you lots of   and   this is your time. 

Cath - you go enjoy that hol girl and make sure DH looks after you.  Try to forget about everything going on and focus on you for now  

I hope Dr G's luck changes   and i re-start his nice line of BFP's!  Then Cath, you can join me next month.  

Lalaby - hope the biopsy is ok, can't remember when you said you are having it. 

Ells - hope you get some answers after today and it was not too painful   

Sorry to anyone else I've missed but I'm off for an early night again.

Sarah x


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## Sprinkles (Nov 6, 2008)

Sarahh ~ thats great 100% fertilisation congrats

Choice ~ congrats on the blasts, take it easy and fingers crossed for you

lalaby ~ hope the biopsy goes well

toffeegirl ~ good luck for EC tomorrow

Hello to everyone else hope you are all well.

Well my humira arrives tomorrow so first ever experience of that, my mum has a chest infection so I've told her just to be on the safe side that I might not be able to see her until its gone, hope I'm not over reacting.

Also had another lovely experience with my clinic (unfortunately internet cant exude how much sarcasm I have in that statement).  They'd told me when I rang with my BFN that my notes would have to go to the unit meeting and I would receive a letter in 2 weeks and if not then to ring.  Two and half weeks later and no letter I rang today and spoke to a nurse who said oh no after every negative the notes go to the unit and you'll get a letter telling you the next step but it takes 6 weeks.  Thats interesting I said as I've had 3 negatives and never had my notes go to the unit, and never had a letter to which she couldnt reply.  After sheer frustration thought I'll just leave it another three and half weeks then as not in particular rush at the minute as want to get immunes sorted, and then come home to the letter which arrived this morning!!! Wish they'd get their act together and their stories straight.  Anyway good news is we can have another cycle now I just need to decide when to call.  Sorry to winge but they frustrate the heck out of me.

Hope everyone is well and looking forward to the weekend.


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## Choice4 (Aug 14, 2008)

Sarah, 9 fertlized thats good news all the way to blast we go.

Sprinkle, it is hard to make the head and tail of some clinics especially when you keep speaking to different people, thats why i like Dr G's clininc no middle man.!!
Well the good news is you have another go, soon, but deal with all your immune first so you would be smilling BFP all the way

The humaria should be no problem, with meeting people as we don't know what people we meet on the streets, work, train etc have!!

Good luck all


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## Cath34 (Oct 14, 2008)

Sarah - you know I am over the moon for you, well done eggies!! 

Choice - woweeeee how many blasts?!!!!! Go girl, you will be   very soon  

Toffee- All the very best for tomorrow hun.   it all goes well.

Hi to everyone else, I'm off to bed. xx


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## Cozy (Jul 17, 2008)

Hello ladies,

well theres some hope for a couple of BFPs.   

Sarah, 9 fertilised... excellent. I hope they continue to do well. Whens ET?   

Choice. Wow 4 blasts on board. I hope they are snuggled in nicely. I just hope they dont divide and you end up with 8  . I guess you are flying back later today.   

Ells, I hope your test was useful and not too painful  

Cath, hope you are ok and that your next cycle will be sucessful when you have it. Your holiday will be here before you know it too   

Toffeegirl, good luck for EC. I hope you get some good quality eggies   

Lalaby, good luck with your biopsy on Monday   I'm there on Monday, what time will you be there?

Hi to everyone else I've missed, hope you are all ok

Cozy


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## lalaby123 (Sep 21, 2008)

thanks for your well wishes for biopsy on Monday i have decided to go ahead with it and cover all grounds......

Sarah- well done eggs and your husband's sperm for getting all fertilised 

Cozy- i am there at 9am i will be the small one with long dark hair looking terrified and sweating in the corner. I am there to discuss results and then do biopsy so not sure what time I will be out.....

Ells how was your test

Toffeegirl - hope EC goes well

Choice - welcome back home today

Sprinkles - glad you got another go even though they are rubbish at their paperwork

hi to everyone else 

xx
L


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## karen (Mar 23, 2002)

Hi all,

Sarah hoping for good news from the fab 9 today!

Choice are you back in the UK?

Quick question for the rest of you - are you using blue needles or green needles to inject gestone? If blue how long are they 25MM or 30MM? I have green at 40MM which hurt like mad and blue at 25MM which I don't know are long enough!

X


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## Choice4 (Aug 14, 2008)

Karen
I am still in my hotel room in newyork, it is 11am here
Flight is 5pm, so back in uk tomorrow morning sat.

For gestone i use blue needles and 3ml syringe!!


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## karen (Mar 23, 2002)

How long are your blue ones? Mine are 25MM but I called fazely pharmacy and they said they are usually 30MM?

How you feeling with your precious cargo? Is DH with you? Have a good flight back

Oh and by the way you cracked my bberry problem - I now have a link and am doing it through the bb!! Thx!


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## Maarias (May 4, 2005)

Karen
The green ones are for drawing up (not injecting as far as I know) and the blue ones for injecting -2.5cm should be fine.

Choice - hope you are getting plenty of rest.

No news here. just sleeping loads!
Mx


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## Sprinkles (Nov 6, 2008)

Hi girlies

Well humira delivered, was quite funny what a large box for 2 little syringes, bless.  Anyways done the first one, funny how injecting now is like second nature.

Have a little question on blood tests for DH if need LIT.  DrG gave me a list of the blood tests required to go to see DrA, and so I went to my gp to ask if he could do them and how long they would take.  He was a bit dubious about one, but one he did say was that if we did HIV then DH would need counselling before hand, which I was a bit surprised about as I'm sure we must have been both tested for that before starting tx at St Marys and neither of us have had counselling.  He also said that they would take 3 weeks to come back which means the 30 day validity window that DrA requires doesnt leave much time.  Alternative is a I guess, if the counselling thing isnt correct, is to have  them done privately either up here or back in Wimpole St.  Any experiences of this anyone?

Have a good and safe trip back Choice

Hope everyone is well, thank goodness its Friday x


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## sarahh (May 20, 2006)

Karen - the blue needles should be fine.  The Green ones are huge - no wonder they hurt! 

No news on my 9 today - hoping that no news is good news.  Dr G said phone at 12 so I did and he said he hadn't spoken to them. Then he said he would phone them and asked me to phone back at 4 which I did and he said still not heard and they were looking at them later but in actual fact that wouldn't really determine much and we'd still need to phone tomorrow!!! 

They have told me to phone at 8am tomorrow so we can find out what stage they are at & then make our way in if required.  But as I want to have acu we might have to leave anyway before we phone and turn round if not needed!  

Sprinkles - the screening tests cost £460 or thereabouts for Greece LIT; prob be around that for PA LIT but a few tests are different. Perhaps you should just say to GP that DH has been tested before so doesn't need counselling? 

Anyway, let you know more about the embies tomorrow - hope they are still doing ok    

Sarah x


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## twinkle123 (Mar 1, 2008)

Hi everyone

Haven't had a chance to read back today but will try to catch up soon.  

Well, yet more complications in the world of Susan's TTC! We went to my GP last week to try getting a prescription from him for my clexane, gestone and prednisolone. Phoned him today as we were still waiting for a reply from him and it was now a week ago.  Anyway, he originally told us that he wanted to discuss it with another colleague first but no, no, no - he's gone ahead and spoken to my local clinic.  He now says he can't prescribe and of it and we'll have to speak to one of the doctors at our clinic.  So annoyed about it all - it now means we have to go begging to that useless doctor who forgot(!) to tell me that I would need a cervical dilation operation to get the drugs.  We asked him about immune treatment during our last follow-up consultation and he says he doesn't believe in it.  Can't really see him being willing to prescribe it all!  

We weren't sure if we wanted to tell the clinic at all about the extra drugs but that decision has now been taken out of our hands.  

On the plus side, my clinic phoned again today to confirm that I can start down-regging on the 5th September and that my cervical dilation is on the 10th September.  Not looking forward to that!!!  

Everything's just getting to complicated!!!
Lots of love to everyone
Susan
x


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## ells (Mar 19, 2008)

Evening ladies,

Choice hope your little ones are hanging on tightly to that coconut of yours.  Have a safe trip back.

Sarahh, sending your embies growing vibes   .  Come on embies grow grow grow   .  Enjoy your acu.

Susan P - thats is soo irritating   .  Why are some doctors like that!  I hope that your clinic will let you get them on prescription.  What a nightmare.  The last clinic we were at weren't interested in immune tests at all!  You would think that with all the research about now that more of them would be using immune treatment.  Good luck hun.

Sprinkles, we had a similar issue with blood tests when we were getting ready to do FET last year (at the same clinic we had had all our treatment at -   ) we had to remind them that we had had all the necessary blood screens done!  I would say what Sarah said - tell them that your DH has had it done before.  Hope all goes well.

Karen, blue needles.  Much less painful.  Good luck hun.

Toffee Girl, how did you get on?  How are you feeling?

Lalaby - sending you lots of   .  I hate going into the unknown too but you will be fine. Good luck for Monday.

Cozy, how are you hun?

Cath, are you counting down the days to your holiday?

Well I had my scope yesterday -   ouch.  The doctor didnt remember anything about my sedation so luckily i took a copy of what was needed (copy from EC!) .  He wants to see me in 2 weeks time for a follow up- I couldn't tell you what he said when he came into see me as I was still out for the count   .  Never understand why they come in and tell you things when the effects of the sedation haven't worn off   .  I had to get an emergency appointment with my GP this evening as have got a lot of pain and its gradually gotten worse as the day has gone on   .  He took my temp and felt my tummy and said he thinks the doc was bit rough   , he told me to take some painkillers and see how i was in the morning.  If no better to take the antibiotics he prescribed as it might be an infection   .  Hopefully will feel better tomorrow.  We had some good news yesterday... we won our appeal for NHS funding    - cant quite believe it but we are really pleased.  We will probably start again in December/January.  So we should have a good chance to get everything sorted out on the immune front etc.

Hope everyone has a fab weekend.  

Ells


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## twinkle123 (Mar 1, 2008)

Ells - good news on winning your NHS funding appeal.   Sorry to hear you're in a lot of pain though. I hope you're feeling much better by tomorrow  
x


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## Toffee Girl (Mar 20, 2009)

Hello Ladies

That sounds a bit rough, Ells - take the antibiotics just in case (you don't need an infection on top of everything else!).

Well I survived my interesting EC visit to London Fertility Centre!  I have to say that in terms of patient care and customer service it was not nearly as good as the private clinic in the sticks where I had my other procedures!!  However, it just goes to show that material trappings and nice people are not the be all and end all in this game - at all my previous ECs I have managed to have 11-12 eggs collected since age 35.  Now at nearly 41, with a crummy AMH of 7.7 at last test, Dr Gorgy has managed to magic up 18 eggs!!!    

Am trying not to get too excited in case we have traded quality for quantity, but it has once again opened my eyes into the complex world that is fertilty treatment!  Probably some or all of you have already discovered this but -  my previous clinic was all organised and standardised but only did scans every 3rd or 4th day (and no daily blood tests) and then perhaps tweaked the dose of the one drug they had prescribed for me (ie Gonal F).  Dr Gorgy did daily E2 and LH blood tests and a scan every day over the next 2 weeks apart from the Sunday and yesterday.  We used a combination of Gonal-F (as I already had some of this held in my fridge) and Merional.  Each afternoon, Dr Gorgy played with the combination of drug doses according to LH and Estradiol levels.  His view is that these two types of drugs work on different elements and tailoring according to fluctuating hormone levels gets the best results.  His results are certainly better at this stage!

As we are incorporating PGS into Day 3 activities, at least it may give us more embies to play with for taking the risk of going to Blastocyst.  At the other centre I was at, because of the rapid drop off rate of our embryos fragmenting between day 2 and day 3 am, the embryologist always advised having put them back in on Day 3.  Now I am wondering how much of that is about how good the embryologists and lab facilities were vs how good my embryos were.  

Sarah - so sorry to hear that you didn't hear.  Hopefully all will be well tomorrow  

Choice - Hope you and embies arrive back safely 

Ladies - thanks for all your kind wishes!  I have done a bit more digging into CGH vs PGS/PGD - if anyone wants to pool knowledge and opinions at some point over the next few days it might be an interesting debate.

PeeBum - in case you log on to this thread, it was lovely to meet you and hear your good news!  

Lots of love

Toffee Girl x


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## Cath34 (Oct 14, 2008)

Ells - great news about your funding, well done. In Wales we only get one free go on NHS!!!!! It sucks!!

Choice - You will be flying home now. I hope you have a comfortable journey and your lovelt batch of blasts are nestling in tight.

Toffee Girl, I hope all went well for you today and that you have lots of lovely eggs to fertilise tonight. 

Sarah - I'm   that your call tomorrow is good news and that they are fighting it out amongst themselves   Hopefully it will all look good for Monday. Let me know in the morning if you get a chance hun.

Sprinkles - good luck with your humira and getting everything sorted for LIT.

Susan - I really hope you manage to get your drugs. 

Lalaby - Good luck for your procedure on Monday, it will be fine, mine was. 

Well ladies I'm off to a villa in Florida on Tues after long thought. I think it will do us both good to have a little break before starting again!!!!!
Love to all, night night
Cath xxx

Karen - I have always used the green needles, never been given blue ones!!! I find the green ones fine but I do bleed like hell when I pull it out!!! I wouldn't worry either way.


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## deegirl (Jan 17, 2009)

Choice, thinking about you and wishing all the very best.  Take care and try and relax. x


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## Krispichick (Nov 27, 2008)

Evening ladies

I hope you don't mind me crashing your thread. I had my first consult with Dr Gorgy on Friday afternoon which has given me lots to think about and as usual a 1000 questions! and who better to ask than the ladies on FF!

A little bit about myself. I am 40 (how!) and my DH is 36. We've been ttc for coming up to 6 years now with not a sausage! DH has 2 children from a previous relationship. The NHS were pretty usesless when we went them 3 years ago - can't find anything wrong, we don't qualify for funding because of DH's 2 girls, maybe we should try a bit harder!!!! So we did as we were told for another 2 years with zip! In the end we went to see Jane Knight at Zita West and she recommended that bearing in mind my age, we stop faffing about and get down to ARGC and do IVF. Which we duly did! Had an icsi cycle with them in Dec 08 (5 eggs, 4 embies, 2 day 3 and 1 frostie) which was sucessful - sadly, bHCG levels started to fall at 5 weeks and I miscarried at 6 wks.

At the beginning of March 09 I discovered that we were pregnant naturally - what a flipping surprise, sadly this one ended at 5+3 weeks. - Subsequent immune tests have shown raised CD56 and CD19+/5+ and consequently raised cytokines at 31. The ARGC suspect that this is as a result of the two losses themselves rather than an existing condition but we didn't do a profile before tx so we'll never know for sure. We have been ttc naturally ever since with no joy. Personally I think that the remnants of the steroids, clexane etc in my system is what allowed me to fall pg and that now that its all gone we won't succeed. We went to see Dr G to discuss having immune tx whilst TTC naturally but he has told us that bearing in mind my age, we really  should save our money and get cracking with a TX asap. 

So thats where we are! Now I have to make a decision about whether to go back to the ARGC (which is like fertility boot camp!) or do a cycle with Dr G. (which by the sounds of it is less intense and cheaper without all the blood testing that ARGC do).

How would you girls rate the FGA (i know he uses a couple of clinics to do ec/et etc - is there a preference on which one? 
What is a typical cycle like at FGA? - I am on short protocol but he suggested that I might have suprefact injections or the pill for a week or so before starting stimms. 
How often during stimms do you see him and how often do you have blood tests?
Approx how much does an icsi cycle cost overall?
How do they do the pg test - is it an HPT or do you have a blood test?
What are his results like - I couldn't find anything on the HFEA site but presumably thats because he uses another clinic to do his procedures.

Sorry for so many questions but really want to get a handle on it before deciding to leave ARGC (i would stay but DH hates it there so I am really torn).

Good luck to you all in your journey - I hope to catch up a bit with where everyone is in their tx.

Best wishes.

Krispichick


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## sarahh (May 20, 2006)

Hi girls, don't meant to drag this board down this eve but I am totally disheartened & feeling pretty low.  

Had a pretty rubbish experience all in all today which I'm not going to bore you all with.  Anyway, had to go in for ET as embryos slow developing so def not risk going to blast.  

Had day 3 embies transfered, 8 cell grade 2 & 4 cell grade 1+ transfered.    Apparently DH's sperm sample was terrible and hardly any normal forms could be found.  Trying to keep it all together as only just started the 2ww (should be renamed 2wt - 2 week torture!  ) but my PMA has just gone out the window today. 

Toffee Girl - well done you, I'm delighted for you.   for great fertilisation for you.  And yes, I know where you are coming from in terms of the comments re: clinic...... 

Promise I'll try to find some PMA from somewhere tomorrow!  

Sarah x


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## Maarias (May 4, 2005)

Hi Sarah,
Firstly, just wanted to say that it was lovely to meet you the other day!

So sorry to hear about your rubbish day    

I can understand that you're feeling low, and don't worry about the PMA, personally I don't believe it makes a hoot of difference. I've never had it on any of my cycles except the one that didn't work!

Quite brutal of them to tell you about dh's swimmers in such blunt terms...anyway, my ds was a three day transfer so don't lose hope.
As you know my so-called 'perfect' embies at ARGC gave us nothing but a big overdraft and a bfn so you never know...

Big hugs,
mxx


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## Choice4 (Aug 14, 2008)

Sarah
Sorry you are feeling that way, sometimes, it is when you think things don't look all that good, is when it works out.
I know someone who had 19eggs, but becaue of her DH's sperm, 5 fertlized, then by day 3, she had 3 left and had to transfer 2 quickly, none to freeze and she got pregnant
So you never know!!

Krispichick
Welcome on board, i would leave other girls who have had stimulation with Dr G, to answer your questions, but here is someting i posted earlier about ARGC Vs Dr Gorgy

http://www.fertilityfriends.co.uk/forum/index.php?topic=204614.msg3211440#msg3211440


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## Toffee Girl (Mar 20, 2009)

Hi Ladies and Krispichick

Ladies - Feeling a bit crappy today, as only 2 of our 18 eggs have fertilised.  I am totally gutted and also cross that I allowed myself to get too excited about the 18.  Dr Gorgy is also gutted, very frustrated etc and bless him, he wants me in for ET tomorrow morning (ie Sunday for a Day 2 transfer) as we don't see any point in waiting.  Have totally lost all positivity and wish I hadn't known about the 18 in the first place!  15 of them just did not fertilise and 1 was immature.  Bummer.  So now no hope of making it to Blasties or PGS.  Got my nails and hair cut today in a bit to stem the disappointment!!!!

Krispichick
I too have one of those 4-legged babies (only my girl is a black one!) and I too went to see Zita and Jane Knight, after 4 unsuccessful IVFs elsewhere.  They suggested ARGC or Yau Thum at the Lister for immune issues, but having found FF and Dr Gorgy, I decided to opt for him instead as he is the only person in the UK who appears to offer/support the full range of Alan Beer's immune protocols (if you haven't read 'Is Your Body Baby Friendly?' yet, it's the bible).

Dr Gorgy set up and ran the London Fertility Clinic for 5 years, before moving to ARGC as Taranissi's No 2 for a few years.  Eventually he got tired of the treadmill and not having the clinical freedom to do what he liked and struck out on his own.  He is probably slightly less intense than ARGC.  

I am in the middle of our first cycle with him (like you I have always done short protocols prior to coming to him and he did put me on the pill for 2 weeks prior to my cycle), and it has turned out to be more intensive than I anticipated.  AFter doing LIT twice in Athens he did agree to let DH and I ttc naturally for 2 months with IVIg, clexane and prednisolone - but I should probably have just taken his advice earlier to crack on with a cycle and stop mucking about!

This cycle has been very intensive, However, he treats every case individually and I think it depends on your circumstances.  Out of the 13 days of stimulation I have just done, I have been up to London every day bar 2 days to do blood tests and scans and then also IVIg or intrallipids x2, and LIT with Paul Armstrong.  However, I don't think this is everyone's experience (Cath34 and Sarahh will tell you their's was different), but we were racing against the clock to try and get me ready for EC before DH flew off to Belfast on Wednesday, and my follicles were just not maturing as quickly as Dr G wanted to he tinkered daily with my dosing etc.

Dr G was using the Centre for Reproductive Medicine quite a lot till recently but remarked to me that their prices have gone up horrendously, so now he seems to be favouring contracting in to London Women's Clinic, which the ladies on the thread seem to like.  I had my EC at London Fertility Clinic on Friday as we were struggling to find a lab that would do PGS due to August hols.  Dr Gorgy has not worked there since he left there, but I believe that they would love to see him back there.  I have to say that there staff were over-officious, threatened to cancel my EC as I had no-one to collect me afterwards (I had agreed to go to Dr Gorgy's for intrallipid's straight after, so was my 'driver' was due to pick me up from there 3 hours later), forgot to get my DH to sign a Consent to Thaw form and then allowed me to leave about 30 mins after I came round from sedation without even checking if I had passed water.  As I looked so compus mentus to the girl at the front desk, she just let me walk out.  Thought it was not ideal.

I don't think he particularly keeps track of his results except to say that he has recently had a long line of positives.  As he subcontracts in to other centres you won't see his stats anywhere.  You may find the price fo ICSI on his website.  My IVF itself was £2,500 and I have a feeling ICSI could be £1,000 more but I am not sure what I am basing that on.  you also need to add in costs for blood tests (LH and E2 cost £70), the usual IVF stims drugs, plus perhaps intrallipids (£350) and IVIg (£1,340) if you need them. Not to mention any other immune testing you want to do (although some ladies are having success claiming some of these back on BUPA).  The costs do mount up but then I believe they do at ARGC too.  Our cycle minus the PGS has cost probably £10,000 with all the IVIg and LIT with Paul Armstrong.  Not dissimilar to ARGC.  

However, that said, Dr Gorgy offers an extremely personal service and you can pretty much talk to him directly at some stage each day if you need to.  He totally tailors the treatment to the individual and cares greatly about getting the right results for his patients.  He is hampered somewhat by not having a medical nurse on staff, and he is getting busier by the week so he cannot always quite remember the intricacies of your case without you being best to refresh his memory.   You also need to be confident with knowing how to do jabs and generally keeping on top of what you should be doing during a cycle as there are no handouts from his place - it's a very low-tech and unassuming office but he does have plans for something more grand in the long term.  The folks on FF help each other out with questions if you come away unsure of seomthing etc. Dr Gorgy offers more immune support than ARGC, as they do not believe in certain treatments (LAD and LIT for one I think - or is that CARE?).  So if you want access to everything you can possibly have, he is your man.  Also, if you ask him about the current thinking on a particular issue, he will give you his view on the latest research, but then often he will go away and review the literature and chat to either Dr Winger or Dr Tsagaris and come back to you with further info, if he is not sure about what the position should be.

Hope that massive essay helps!  Good luck with your decision!

Love to all the ladies  

Toffee Girl x


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## Toffee Girl (Mar 20, 2009)

Me Again ... promise I am going to eat my tea in a minute but ...

Sarah, I am so sorry to hear your day was about as rubbish as mine.  Still you have 3 on board and who knows what may happen - you only need 1 to make your miracle happen.  I know what you mean about losing the positivity - it has taken me all day to recover from the 2 out of 18 scenario and I still don't feel good about the upcoming ET.    Dr Gorgy has many stories about women he has treated who have got pregant against all odds with only one dodgy embryo so hopefully it will be your time this time.

Lots of love

Toffee Girl xx


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## Maarias (May 4, 2005)

well, if it's any encouragement I got pregnant with frozen blast (and yes even Dr. G wasn't too optimistic). It was the only one we had left as well...so you never know!!


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## Choice4 (Aug 14, 2008)

Toffee girl
Sorry to hear of your story, i wonder if they should have stimulated you abit longer for the eggs to mature a bit more.
Are you having the transfer at LFC,?
You never know, it only takes one to make a baby
Like i said to sarah, sometmes it is when things don't really look perfect that it happens
So good lock for ET, tomorrow
NB: that was a good summary for krispichick, and any newbie!!


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## Toffee Girl (Mar 20, 2009)

Hi Choice

Yes you might be right.  My follicles were not growing as fast as we wanted and we were trying to aim for EC on Friday which would allow for PGS.  At the start of the week Dr G was not sure if Saturday EC would be better.  Perhaps in hindsight it would have been.  The other thing that was not ideal is that the Pregnyl (HCG) he gave me to take 10pm on Wed night needed to be refrigerated and I had to travel home with it on that really hot day which took well over an hour and a half.  I have spent a lot of this evening on a great medical website researching what makes your eggs halt maturation in vitro and not fertilise, and one of the things mentioned in the research (apart being 40+ ) was the imperfect timing of the HCG injection or a question mark over the batch of HCG.  Travelling home with it in 30 degree heat can't be helpful!!  We also took a punt on using a frozen sperm sample this time, and although after it thawed they said it looked 'good', Dr Gorgy now wishes we had done ICSI just to maximise our chances.  Oh well.

And yes the transfer is 9.30am tomorrow at LFC.  How are you feeling after your flight etc?

Maarias - you are living proof then that these miracles can happen against the odds!! Fantastic.  

Take care

Toffee Girl x


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## Choice4 (Aug 14, 2008)

Toffe girl
Good luck for 2morrow
I am suprised they did not do Icsi
In Sirm newyork, they use icsi for everyone, to maximize fertlization

I think everyone should ask for icsi, if you can afford it, the worst is that you freeze the extra embs.

Any way that said and done, we hope for the best for you!!


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## Cath34 (Oct 14, 2008)

Hi Ladies, well some of us are having a s**t time at the mo!!! 

Sarah - chin up lovely, it quite often works out that not so ideal situations bring a bfp!!! Millie is  also living proof that it can work for you.   Look at me I had 4 very good blasts apparently and still no bl***y bfp!!!  You can never tell or assume in this game. Try and stay positive, rest up for a few days and I hope time goes v quickly as I hate that part too.

Toffee - Bless you, I'm sure you were disappointed seeing as you has 18, but again my friend had a similar sitiuation where she had 2 fertilise and day2 ET and she is now happily pregnant. It does happen. I agree with the timing issue, I should have waited an extra day for EC but ET would have been a Sunday and LWC would have forced a day 3 ET he told me afterwards which I think is awful with all the money we are spending!!! I had 16 eggs and only 7 mature so I triggered too early we both agreed!!  By the way ICSI I had I think it gets better fertilisation as I have had 2 sperm fertilise an egg previously which is a waste. It only cost £400 more. ICSI is £2900 with Dr G. Good luck tomorrow Toffee. Fingers crossed it goes well.  

Choice - How are you hun? I hope those babies are snuggling in. What have you done ref steroids day 6,7,8?
Are you gonna have any IVIG / IL during 2ww?  

Krispichick - I echo what the girls say about Dr G. He is very dedicated and sympathetic indeed. I had E2 test done every other day locally and scan 3/4 times with him during stimms but needed to stay up towards the end as he needed to make sure I was ready for EC on the Monday!! It wasn't everyday for me but it is tiring as he likes to monitor well during stimms.

Night night all, xx


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## Choice4 (Aug 14, 2008)

Cath
I am on dexamehasone 0.75mg( usa dose) so I double dose(1.5mg) day before ET, till now, as i felt feverish day before.
I take one in the morning and one at nite, but depending on how i feel i take 2at once
No ivig or intralipids at the moment, as I had 6 bottles of ivig before traveling. and 1 intralipids day before transfer.
( I told the Dr i had 1intralipids in london,(Lie!!) but my Dr in Uk wanted me to have another one, he said to be honest, nobody knows if intralipids really works and how it works), but i insited on the intralipid just to throughevrythin in.

I am not feeling any symptoms yet, when should i start feeling something


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## Little Mrs Sunshine (Aug 6, 2009)

hey girls, hope you don't mind if i join in here!?
i am about to startmy first cycle and really am a bit nervous - -well very nervous if i am honest
and also scared
not to sure about injecting myself as i don't like needles at all!!!
what can i expect? all i keep getting told by my friend is that o will be awful and narky??
is this about right?
is it hard to inject?
xx


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## Maarias (May 4, 2005)

Hi kIRST
The needles are quite thin so you don't really feel anything. I always tried to inject at an angle so that it didn't hurt so much.
I would get some help with the gestone needles, as they're the only tricky ones.

Choice - you might not feel anything until you're about 12wks pregnant, so don't panic if you don't!

Mx


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## Little Mrs Sunshine (Aug 6, 2009)

Thanks for that M hope everyone has as nice weather as we do today! Can't believe how warm it is already and it is still really early

xx


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## karen (Mar 23, 2002)

Sarah - I understand totally how you are feeling having gone from 13 to 1 in 2 days myself. I can't believe this has happened (is there a trend emerging here with all these unexpected disasters at EC / ET stage?) But you had 2 good ones put back and you do only need one. There are some threads on the peer support / during treatment board they may be on p2 now but you can read about lots of sucesses with only 1 which does raise spirits a little. You've had all the immune treatment as well so you still have a really good chance.

Toffee girl - I'd give you big hugs too but can only manage basic post when not on my pc!

Krisichick - I've cycled at both argc and dr g so will pm you with my thoguhts tomorrow when I'm home.

Hi to everyone else we're now getting a big group!

X


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## lalaby123 (Sep 21, 2008)

Toffee Girl and Sarah sorry you are disappointed. I have no words of wisdom as new to IVF but as the others say you never know and all it takes is one good one so try to stay positive and take it easy 

Karen, can you post your comparison of your experience of ARGC and Dr G to me as well or post it on here please??

Choice, hope those embies are holding on tight, take it easy and do some visualisation i have been told it helps!

hi to everyone else, going to London today for visit to Dr G tomorrow

Cath i hope i bump into you at his office

xxx


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## Cozy (Jul 17, 2008)

Lalaby,

I guess we will miss each other at Dr G's tomorrow. I'm not there until 4pm,though I will be going in earlier to get the paperwork for my TB test and DH's karyotype test. I tried to get an earlier appt as its dead easy to drive down early have the appt and drive home, traffic is usually good, but I couldnt get one as he wants me to see Dr Eskander tomorrow.

I hope your biopsy goes well and its not too painful for you

good luck

Cozy


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## lalaby123 (Sep 21, 2008)

sorry Cozy and Cozy I wrote Cath when I meant Cozy.....getting my knickers in a twist here  

Cozy, shame we won't meet, all the best with Dr Eskandar let us know how he was.....

xx


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## Cath34 (Oct 14, 2008)

I will be there for a scan tomorrow at 3.30pm though so I may bump into some of you ladies? Then I'm off on my hols to Florida. Sun, spend and a huge chill out for us I think. 

Choice -my friend had an increased sense of smell about 8 days after EC. How many day are you now?


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## lalaby123 (Sep 21, 2008)

Cath - sorry won't bump into but have a great holiday you truely deserve to let your hair down come back nice and refreshed ready for your next transfer xxx


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## karen (Mar 23, 2002)

Cath enjoy your hols - where is florida are you going? Are you "doing disney"?


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## sarahh (May 20, 2006)

Hi all, thanks for your kind words.  I am trying to get my act together honest I am!!!  Mustering up some   from somewhere......  Does anyone have any success stories with grade 2 embies.  Because ours have always been grade 1 i've always just assumed that grade 2 has no hope 

Toffee Girl - so sorry about your fertilisation rate,   wonder why Dr G didn't suggest ICSI for you??  Hope ET went ok this morning and   it wasn't quite as bad as my experience yesterday.  I misread your post and didn't realise you said LFC not LWC!!  They all sound the same....  

It is so hard to pick yourself up after a knock like that, well done you for going out and doing something.  I was delighted with my 12 eggs and 9 fertilisation but the come down with the poor quality embryos was something else.  Its that roller coaster ride we are all so familiar with eh?  Hoping that Dr G can still work miracles for us hon,    

Whoever was asking about Dr G vs ARGC - I went for my initial appt at ARGC and felt like a "number".  It just felt like a total treadmill of ladies to me.  I had little doubt that they don't really tailor the treatment to the individual as much as they should and they told me something very very wrong which could have caused me great potential problems had I not questioned it.    

Dr G is getting much busier and at times you will feel "does he remember who I am" - but the one thing you would learn is that he keeps his cards close to his chest and i am sure he is very much aware of what is going on.  It may take him a minute to remember but when he does he is there.    I would say, as I think Toffee said, he is not so good with the "hand holding" in terms of if you don't know how to inject etc. as he has no nurse but I would think that if someone was really unsure about this you could probably ask to see one of the nurses at LWC for a teaching session.  I'm sure that would not be beyond him arranging.  

I was monitored every other day during stimms. I didn't find that too bad.  And you don't have to be there at the crack of dawn to have the blood tests like ARGC so if it is easier for you to get there for say 11am then that is fine for the bloods / scan.

Dr G is a very gentle and thorough dr.  He does genuinely care for his patients I am certain.  

Choice - hope those embies are snuggling in.  I didn't really feel anything apart from bloating & cramping and I did get the increased sense of smell that Cath said her friend did.  But of course everyone is different.  

DH gone off to make my lunch now and I'm sitting in the garden reading taking it easy.  Couldn't stomach laying in bed anymore.  The leaflet from LWC says bed rest for 3 days!!!  I'm just gonna take it easy.  

Cath - good luck for that scan tomorrow.  Thank you for everything hon, you are a rock  .  Have an absolutely fantastic holiday & chill as much as you can.  Take it you are staying over in London tomorrow eve ready for your flight?  What time / where you flying from ?  

Lalaby - good luck for the procedure tomorrow (think its you having it?!) Dr G is very gentle.  

Sarah x


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## Toffee Girl (Mar 20, 2009)

Hi Sarah (and all)

Yes ET went ok this morning - thank you!.  Luckily I still had the two embies and they were graded as 'good' rather than 'excellent' - but doing what they were supposed to be doing division-wise, so that's a relief.

What is it about these centres and all the different instructions you get? Dr G said 'take it easy', LFC said nothing but you can resume sex anytime (!!) , your place said complete rest for 3 days and my old centre used to say carry on as normal apart from heavy lifting.  Who is right

Oh well - at least you (and I) can relax for a few days before the waiting becomes too intense.  Hope you are feeling a little more cheerful today?

Hi to everyone - hope you are enjoying the sunshine if you have it?

Take care

Toffee Girl


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## Sprinkles (Nov 6, 2008)

Susan ~ oh how frustrating that your gp contacted the clinic  , its difficult isn’t it co-ordinating everything together, you’d think gps and clinics would embrace the fact that we’re trying to help ourselves then we wont be on their lists for a long time.  Good news that you got your dates though, hoping the dilation goes well.

Ells ~ congrats on winning your appeal that’s wonderful, and hoping that your pain has eased  

Toffee girl ~ glad ET went ok today, hope that you’re feeling a little better today  

Cath34 ~ have a wonderful time in Florida, whereabouts are you going?  Good luck for scan tomorrow.

Hi Krispichick welcome and sorry for your losses, unfortunately I cant give opinion on having full tx with DrG as I only have immunes with him and tx at my NHS clinic but he is lovely and if I could afford it would definitely go to him for everything.

Hi kirst73 needles and injecting are a bit daunting at first but before you know it you’ll be an expert they’re not too bad once you get into it.

Sarahh ~ so sorry your PMA disappeared but hope you’re having a better day today  

Hi to everyone else hope you’re all well.  Nothing much to report apart from its raining up north so cant get into the garden today which is what I wanted to do, so maybe going to do some cooking instead.


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## twinkle123 (Mar 1, 2008)

Hi everyone

Can't keep up with all your chatting so sorry for mentioning everyone. Must do better!  

Just been googling cervical dilations and feeling quite upbeat about having to get one now.  My last 2 ETs were really difficult and involved cutting my cervix with long, scary scissors as I have a stenosed cervix.  Apparently, a difficult ET affects the outcome of IVF.  Also if there's lots of movement of the catheter tip during the transfer it can lead to 'endometrial trauma'. Not only that but if there's blood or mucus on the catheter it affects the embryos and implantation.

Don't really want to get this dilation but it seems there are lots of reasons why I should get it.

Need to phone my local clinic tomorrow and make an appointment to beg them to give me the drugs Dr G told me to get.  Not holding my breath seeing as the doctor we've been seeing the past few times there has already forgotten to tell us I need a cervical dilation and has never mentioned that I have a stenosed cervix.  

What a day here today.  Think summer is well and truly over with! Don't mind it being raining  and windy when I'm at work but not at the weekend!

Love to everyone
Susan
x


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## Cath34 (Oct 14, 2008)

Hi all,

Well its P****d down with rain in Wales today and I got soaked taking my dog for a walk on the beach.   I had to   to myself as I was th only mad person on the beach in severe rain and wind absolutely drenched and my mad puppy enjoying every minute of it!!! 
Its my only sanctuary during this s**t time, to walk my dog along the beach and clear my thoughts, well the negative ones!!!

Toffee - well done on ET. Enjoy your 2ww and try not to go  

Sarah - hunni grade 2 is fine honest, I was told and asked aswell that every success cant always be from a grade 1 embie surely and I have always been told good god no!!!! Nature is a strange thing and out of our flaming control. Please dont beat yourself up, what you have on board is fine, but like me you are a perfectionist! Try and chill, I will be thinking about you. Keep in touch.

Choice - How are you feeling hun?

Good luck to everyone having treatment while I'm away. I'm off to Kissimee as we have a 5 bed villa there which is very close to Disney and we can see the fireworks from our pool deck. We love going there and just chilling out- no parks for us, done them all over the years and the amount of people wreck me in crowded places. My patience has gone since starting tx!!!!
Just relax, eating in lovely restaurants and £££££ a little on myself maybe but not too much as the wallet is struggling since paying for tx with Dr G!!!!!!!!!


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## sarahh (May 20, 2006)

Oh Cath, can I come too    That sounds like bliss!!!!  I promise I'll try to chill for the rest of the 2ww - what happened has happened.  Have a FABBBBBB time and go on treat yourself (you can't take it with you eh? - good job cos all of us on here def won't have any £££ left to take with us!) 

Choice - how you feeling hon?  Driving yourself   symptom checking?  Take it you are doing blood pg test?  Nxt weekend or early nxt week? PM me!  

Hope everyone else having an ok day.  Weather rubbish here today (was I the only one who had glorious weather yesterday - sat in garden all day (in shade) but it was beautiful?) 

Having another relaxing day doing ..... nothing ..... except spending too much time on this machine, prob a bit of internet shopping (its got to be done hasn't it?  ), catching up on some itellectual reading (OK & Heat mag) & maybe having a nap at some point!.  Its our wedding anniversary tomorrow so maybe we'll make the most of DD being at her Nana's house for the week and actually go out in the eve for a meal (that is a real treat for us!). 

Sarah x


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## siheilwli (Jan 18, 2006)

Quick question girls:

I need LIT (husband will be ok rather than donor), advantages of Paul Armstrong v Athens? Trying to work out which one is best option for us.

anyone been to either? I'm in London, so what's the best way to travel (i.e. is Easyjet cheaper, but further away from Athens, so no different to going from Heathrow) and what's the best prices you've got for flight to Athens?

Cath34 - enjoy your hols! 
SarahH - enjoy your anniversary, and hopefully a lovely meal.
Toffee - hope you're able to relax a bit on your 2ww. As far as advice is concerned, it's up to you. But DON'T lift anything heavy. After my first IUI, I helped my FIL out of a car, and felt a rush of fluid come out (sorry if TMI), and always wondered if that messed up that go. I've always been given the advice "don't hoover"!
SusanP - I've had a cervical dilation done - any questions just ask! Was quite painful when I came around from the anaesthetic, but no problem a few hours after. I think it didn't last THAT long, as I did have a difficult transfer a few months after.

Me - have just ordered my humira - arrives on Friday, so can't wait to get injecting (MAD I know!)

A massive HI to everyone else,
Cat


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## Choice4 (Aug 14, 2008)

Cath
Have a safe trip and enjoy your time off!! across the younder!!

Siheilwi
Here is all you need to know about LIT

http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.0

Sarah
Welcome to the 2WW
Not much happing here for me, I am working on my tax return papers, to submit to my accountant ASAP, as i have been delaying it for a while.

Hi to all


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## lalaby123 (Sep 21, 2008)

well the endometrial biopsy was as bad and maybe worse than I imagined. It seemed to go on forever and I felt every scrape and once he was done he said do you mind if i go back in because i haven't collected enough       so it went on again yuck yuck yuck THANK GOODNESS it is over....

I have to say I had a very disappointing review consult with D G, Carissa had called in sick so out of my 1 hour consultation, he was on the phone the first 45 minutes of it then he was in a rush to do the biopsy and spent only 5 minutes briefly telling me that my cytoxity is high at 24, TH1:TH2 is borderline at 27 hence need for biopsy, I have thyroid antibodies and anti cardiolipin antibodies (all of which I already knew) and that's it. I was hoping to be armed with tons of explanation and treatment for the imminent cycle but he said just to take Aspirin for now and we have to wait for biopsy results and then he will tell me next month....very frustrating as I wanted to get cracking and try and support my natural cycles in the next two months.....
I felt sorry for him as he was very distracted and trying to do everything in Carissa's absence but at the same I felt dissatisfied with my consultation. 

anyway enuf winging couple of questions ladies:
-what do high anti cardiolipid antibodies mean?
-which aspirin do i take? is it baby aspirin and is there a particular dosage? 
-should i take fish oils in the meantime to help with cytoxity??
-should i take anything else to help with natural cycle, eg I have read PABA help with immune issues....

Good thing is we are going away this thursday for two weeks so it has come at a good time, with all the immune testing out of the way i am going to let my hair down a bit and then come back to the biopsy result....

hope everyone is well and hanging in there
xxx
ps as i was walking out I bumped into a lady with a nice bump so I said oooooooh you are a success story  are you one of the girls on fertility friend she said no i work here .... you can imagine how stupid i felt


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## ells (Mar 19, 2008)

Hi ladies,

Cath, have a fantastic break -your villa sounds wonderful.  You should be able to still make the most of the good exchange rate!

Sarah, hope you have your PMA back today.  You have two fine embies on board -have you started talking to them yet?

Toffeegirl, how are you feeling?  Enjoy being PUPO. 

Choice, how are you feeling?  Are still feeling tired from your trip?

Lalaby, how did you get on today?  Hoping that it wasnt as bad as you thought it was going to be.

Hello to everyone else.

Well I had a 'nice' weekend.  Still feeling sore from my scope and quite uncomfortable.  Spoke to my GP and he has given me a prescription for some strong antibiotics but told me not to take them if I could avoid it.  So trying to put up with it, I have put a call in to the consultant but the phone went straight to answerphone - we will see if he calls me back!
Had to go and have some bloods done again today - when I had my level 1's done they came back with high whiteblood cell count, high red blood cell count, high protein c and S levels - so our clinic has asked me to have them done again to see if they were just an unsual test or whether there is a problem.   Have to wait a week and see what the results say.

Hope everyone has a good day.

Ells


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## twinkle123 (Mar 1, 2008)

Sorry you had such a disappointing consultation lalaby.   Must be a nightmare for him when Carissa is off but still, it's your time and you should get his full attention. 

Update from me - phoned my local clinic today to make appointment for going in to discuss getting the drugs Dr G wants me to get.  Didn't originally want to tell them I was going to be on extra medication during my next cycle but as my GP went straing to them, I had no choice.  Explained yet again what medication I've been told to get and he basically said he didn't have a clue what I was talking about.  He's refered us on to the head doctor at the clinic and we've been given an appointment with him for Thursday at 9am.

Didn't think this was all going to be so complicated!  

Susan
x


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## sarahh (May 20, 2006)

Susan - just a thought but why don't you just get the prescription from Dr G and get the medication sorted yourself.  You do not need to get it from clinic - if your GP won't fund it (which i think you said) then you are going to have to pay for it whether you get your clinic's approval or not.  At the end of the day it is your choice as long as you tell them what medication you are on.  I wouldn't bother with this hassle of trying to get their permission first??  

Lalaby - sorry about your biopsy experience.  It must have been very frustrating if he was on the phone for that long.  When I phoned yesterday pm his daughter was in - was she not there when you were in??  I'm afraid he does have to juggle his time somewhat and sometimes it leaves us feeling a little frustrated.  You do have to be quite positive with what you want to achieve when you go to see him and explain that is why you came to see him and you would really like an explanation etc.  I know it is not always easy but I'm sure you will get the hang of it..... 

Well I wouldn't exactly say that my PMA has returned but I'm feeling slightly better (emphasis on slightly!!).  Just trying to get through this next week as best I can really.  Have been experiencing the dreaded period type pains on & off since yesterday, sometimes getting strong and then wearing off a bit so that of course sent me into another downward spiral but as we know girls all we can do is wait and see!!!!! 

Choice - how you feeling??  You sound like you are taking it all in your stride as usual?!   
I've been getting a bit paranoid about my gestone jabs as no one has really shown me exactly where it needs to be done - its been described as dividing your bum into 4 and using the top outer quarter but someone else said you then divide that bit into 4 and use the top outer quarter of that so it kind of ends up not that far from your hip bone - is that right?  If I get the wrong place will it hinder the absorption of the gestone??  Now wondering whether I am getting period cramps because my progesterone levels are not being raised enough?  Christ, will someone just lock me up in the nut house for the nxt week please  !!!!! 

Hi to everyone else.  

Sarah x


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## Choice4 (Aug 14, 2008)

Susan p, 
Sarah is correct you don't need to get permission from your clinic, and if they don't support it, just tell them you would not be taking it anyway, it is up to you to get it private and take it.
You can also take your book "Is your body baby friendly" and show the consultant, infact lend him if he would like to read!!

Sarah
You are lucky!! as you are getting cramps I am not getting anything
For the gestone, give the injection on the upper outer qudrant.
I.e any where on the top outer side is fine so no worries.

As for me, I went to acupunture yesterday, had my car in the car park, and came out someone had hit the car, reversed into it.
Luckly i saw a note on the car, from a witness, so i have to contact my insurance and make a claim!!

I am not getting anymore email notifications from FF on my yahoo account, is this happening to anyone!!!

Hi to all!!


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## sarahh (May 20, 2006)

Choice hon, sorry to hear about your car, what a pain in the rear, just what you need atm - NOT   

Hope your ins co are ok to deal with and don't get you stressed (altho I have to say I can't imagine you getting stressed about anything  ) 

I think it is quite commonly known that the cramps are prob down to the Gestone / Cyclogest?  I guess you are still on these??  Have you had sore (.)(.) or anything?  

Cramps don't mean anything either way really tho - could be AF could be Gestone / Cyclogest - just something else to add into the bargain making me go   - is it / isn't it good news!!!!  

Anyway, off for a chinese tonight so looking forward to that.  Haven't been out the house since got back from ET on Sat  .  Think I might just slip into the conversation with DH that I'm not yet ready to give up on trying if this is not good news..............  it is our anniversary after all, he can't be cross eh?!!!   

Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
I have spoken to the insurance about the car, no stress for now!!

I am on dexamethasone 0.75mg. IM progesterone 100mg at night, E2v/Prog supp( 100mg) ,4mg esteracedaily, Im estrogen every 4days.
Dr G, addeded cylogest,and clexaine 40mg,asprin every morning.

enjoy your chinese!!, what meds are you on
I am sure Cath is in the air now!!


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## ells (Mar 19, 2008)

Hi Ladies,

Chioce, sorry to hear about your car, hopefully your insurance will sort it all out for you.  On the notifications on email, I have only been getting the odd email now for PM's doesnt seem to cover off all of the messages   .

Sarah, yum Chinese sounds good do you know which resturant you are going too?  With the gestone, I was taught to divide your cheek into 4 and use the upper outer quarter, but makesure you can pinch the flesh - needs to be flesshy for the needle.  The nurse told me that all you will do if you get it in the wrong place is poss hit a nerve and bruise more, you still get the benefit of the drug.  Sending you some PMA and  

Lalaby, how are you feeling today?  I hope that you are okay, its a shame you didnt have a good experience yesterday.  I think it always knocks the wind out of your sails when you have built yourself up for the appointment.  

Susan, Our last clinic didnt believe in immune testing and poo-pooed NK cells too.  If you can still get all the meds etc I wouldnt worry about it.  I was a bit worried speaking to our new clinic about immunes but our doc had read Dr Beer's book and really believes in immune things, so that was a relief.  She has been really great.  I hope that you appointment with the head honcho goes well tomorrow.   

Toffeegirl, how are you doing hun?

Hello to everyone else.

Sending you all lots of    and   to you all.

Well I am off to have an x-ray on my tum   as its still not right.  Doc told me to take some dihydrocodeine so hopefully that will help.

Have a lovely rest of the day.

Ells


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## sarahh (May 20, 2006)

Ells, hope x ray went ok and you are not too uncomfortable    Are you talking about Dr Ingamells - does she believe in the immune stuff then because a few years ago they never mentioned it?

Are you going to use Dr G just for immune support if you need it and still use Wessex or going to use Dr G for the lot?  

We used to live in Southsea so going to a lovely chinese restaurant there.  We also like one in Park Gate - can't remember what it is called but think it is quite well known in the area.  PM me, let me know where abouts you live?  

Choice - I'm on Prednisolone 25mg, aspirin, folic acid (only normal dose), gestone (in morning though?) 100mg IM, Cyclogest 400mg 1 x in eve, clexane 40mg (mornings).  Wonder why some say gestone am and some say gestone pm??  

Toffee Girl - hope you doing ok today.  All I've done all day is sit on my backside (getting sorer from the gestone) & looking on internet & eating chocolates (anniversary pressie from DH - diamonds or choccies girls, which would you prefer   BOTH!!! Alas no diamonds after Dr G's - god think of the diamonds we could have bought with all that money  ).  Hope you are managing to relax with DS and DH at home.  Hope someone looking after your horse and you not having to go to do that ??  

Sarah x


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## lalaby123 (Sep 21, 2008)

Sarahh and Choice - glad you are keeping your wits about you and not going too   during the wait. It must be so difficult i think i would drive myself crazy worrying about each sensation. Keep yourself busy and distracted and take it very easy

Choice- bad luck with the bump in the car but luck you had a witness

Ells hope xray went ok?

Susan P- hope you sort out the drugs without getting clinic involved

I am over my biopsy although my body has memorised the feeling and it keeps replaying it in my mind and in my uterus its bizarre!!!

I know i am being impatient but as I won't know my plan of action for another 3 weeks till my results and Dr G are back from hols I would be grateful if any of you could give me your opinion on my case and what my treatment will entail based on:

-normal hormones etc, good AMH
-regular cycle and ovulation
-mild endometriosis recently detected and removed
-1 early miscarriage 2.5 years ago
-high NK Cytoxity 50:1 at 24
-anti thyroid antibodies and anti cardiolipin antibodies
-age 39


Do you think the NK cytoxity is some explanation as to why I have not gotten pregnant? 

Dr G told me to start taking Aspirin, i know i am being pathetic asking about this but is it baby aspirin i should get and how many to take?? and should i start taking Fish oils in the meantime?? I want to do something, anything to help myself in the meantime......


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## Sprinkles (Nov 6, 2008)

Sarahh ~ oh congratulations on wedding anniversary, hope you’ve had a lovely day.  Its mine today as well, four lovely years married to my DH, how many years you celebrating?  Have a lovely meal

Cath ~ have a wonderful time luvvie

Siheilwli ~ have recently had my first humira injection too, and am feeling ok off it really.  Sorry cant help with other questions about to investigate LIT myself.

Choice ~ tax returns – boo!  Hope you’re feeling ok.  Isnt it just rude when people just drive away, so irresponsible and something you really don’t need right now, but hats off to the witness. 

Lalaby123 ~ sorry to biopsy was yuck, cant help much on the questions I’m afraid, still getting to grips with most of this myself.  When is DrG away please?

Ells ~ hope blood results come back ok, how was the xray?  

Susanp ~ hope Thursday appointment goes better than todays and the head dr will be a bit more co-operative

Hi to the rest of you lovely ladies.

Clarissa faxed me my results from last weeks tests today, everything back barr the DQ Alpha so will wait for that until report in on next steps.

Off to cuddle up and watch a film with DH as our wedding anniversary today, same as sarahh, not done much else as was working late and pennies a bit tight due to tx, but we have each other and will possibly do something at weekend anyway.


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## Choice4 (Aug 14, 2008)

Sarah 
enjoy you nite out, I would say diamond 'as it lasts forever'!!

Lalaby
Baby asprin is 1 a day in uk is 75mg in usa it is 81mg, fish oil is good as well
You may want to add other supplements like
Pycgenol and resveritol both antioxidants, selenium, CQ10, folic acid, pregncare

See link, i was on these but reduced with time
http://www.fertilityfriends.co.uk/forum/index.php?topic=192381.msg3143272#msg3143272

Sprinkle and Sarah, happy anniversary, i hope you may also celebrate baby birthday around the same time!!!


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## lalaby123 (Sep 21, 2008)

Choice- thanks for that will have a read and get the baby aspirin and fish oils

Sprinkle and Sarah - Happy anniversary hope you're having a nice evening with lots of         

hi to everyone else 

xxx


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## lalaby123 (Sep 21, 2008)

Choice - one quick question....is it ok to take Aspirin AND fish oil at the same time? apparently fish oils have a blood thinning effect as well. I am going away on Thursday and want to pack my bagful of supplements ;-)


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## Choice4 (Aug 14, 2008)

I take both fish oil and asprin, I have not had any problems
Infact, one lady called SAM, on FF, (if i remeber) got pregnant on Fish oil and asprin alone
So try some gigy gigy while relaxing on your hols!!!


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## twinkle123 (Mar 1, 2008)

Enjoy your holidays Cath.  Hope you have a nice relaxing time.  

Happy anniversary to Sprinkle and Sarah!   Hope you've had a lovely day.

Nothing to report here.  Got our appointment with our local clinic on Thursday to say what they say about prescribing me claxane, prednisolone and gestone. Hoping it goes straight forward but nothing can surprise me any more!  
Love to everyone

Susan
x


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## lalaby123 (Sep 21, 2008)

Thanks Choice4 - I really hope and         I come back from hols to some good news from you......in fact i have a new iphone so maybe i can see the posts while on holiday so I will be looking out for news but no pressure hey!!!

Susan P- good luck getting the drugs but if they don't just get them privately

Cath - hope you are having a lovely holiday, we will be in US as well but on the west coast

Sprinkle and Sarah H- hope you had lots of loving last night     

Ells good luck with the investigations, i hope everything is alright

Sarah H - l really hope you have some good news to share with us soon, i will be     for you and Choice and looking out for your news 

I got my period today one day early after the biopsy and because i was recently diagnosed with endo i spent the entire night sleeping with my top part raised to avoid retrograde bleeding! i know i am mad but i just couldn't sleep flat knowing that the blood is gonna spill out of my tubes....the things we do hey!

Also I am now convinced even more that in the past 2.5 years I have been pregnant on many cycles but then lost it before period due. Most months i had all the symptoms of pregnancy which i experienced when i miscarried but then a few days before my period the symptoms would disappear and then i would get my period. Also my blood was dark and very clotty. THIS cycle however that is the ONLY cycle we didn't try due to soreness from laparoscopy, i didn't get any of those symptoms that i would get before and my period is totally different red blood and thin instead of dark and clotty. Those evil NK cells have been busy down there in the past 2.5 years me reckons......

on that note off to get fish oils and aspirin and then pack

lots of love to everyone else, and i hope i come back to some good news on return
xxx


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## sarahh (May 20, 2006)

Sprinkles - happy anniversary for yesterday!  Ours was 7 yrs. 

No news from me apart from obviously going mad during 2ww  

Just a quick question - got blood form thro from Dr G today and he has put BhcG and Prog - I can't see the point of paying for Progesterone test if I am not pg (which obviosly won't know until BhcG result) does anyone know why he would ask for this at the same time - I don't really want to throw any more money away if i don't need it but does it provide any information as to why didn't get pg for example i.e. if prog level too low or something  Any hints let me know!! 

Hi to everyone, hope you all doing ok. 

Sarah x


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## omni (Dec 4, 2006)

Sarah,

I seem to remember Dr Gorgy put some qualifying remark in brackets on my blood test form after "prog" like "(only if Bhcg is positive)".     
Omni


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## karen (Mar 23, 2002)

Lucky I've still to write my promised review of ARGC v Dr G for Krisichick and I have to say its one of the thigns which anoys me too - one emergency phone call fine but constant interupptions when you're paying so much for the consult grates!


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## lalaby123 (Sep 21, 2008)

Lucky, i agree that the way he conducts his business is not very professional, in my last consult he spent the majority of the time taking calls because his secretary was off sick and I felt rushed and the whole thing was very chaotic, I resented paying £90 on top of the £350 (biopsy) when I didn't really have an hour of his time, having said that I think he knows his stuff and as the ladies here will tell you he does care when it comes down to it so I guess we have to take his early teething problems with a pinch of salt and just hope that he will find and treat our problems which is what we're after at the end of the day....
good luck in your efforts
xx


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## omni (Dec 4, 2006)

Hi Lalaby,

Given your more detailed description of your consultation in your earlier email, you should at very least get a free consult of another 30mins+ (in person or on the phone). I am really surprised that you were charged for that!  I can understand, it was not Dr Gorgy's fault/intention that his secretary was ill and he could not simply ignore calls BUT ultimately that is his problem. He should compensate you for that. It is not good that you came away with unanswered questions.

When I did my initial consult with Dr Gorgy, I was there for over an hour and I don't remember any real interuptions. He seems to be more busy now and I agree, he needs to make any interuptions minimal. He needs someone to screen calls, and to leave time between appointment to return calls. 

Lots of patients keep complaining about this. Choice, I don't know whether you could have a word with him when you are next in?

Omni


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## Cozy (Jul 17, 2008)

When I was there on Monday I told his daughter Marie about a few problems, i.e being interupted and him not answering emails. I suggest he also needs either a nurse or some experienced person to be able answer alot of our questions that dont necessarily need a Dr's response; she said she was aware of this and agreed and said she would bring this up with him again.

Some things def need to improve, but I think he is still able to help us all alot and I for one wished I had known about him earlier

Cozy


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## ells (Mar 19, 2008)

Hi ladies,

hope all our anniversary couples had lovely days/nights   and the ladies got well and truly spoiled!  Sarah, it has to be diamonds   - sparkles and twinkles!

How are all the PUPO ladies?  Any symptoms?  Hope you are not feeling too   on your 2ww.  Sending lots of         and sticky vibes     to you all.

Cath, hope you are enjoying the Floridian sunshine   .

Susan, hope your appointment goes okay tomorrow.

Lalaby, I was reading about the eskimo fish oils and how good they are for you.  I was looking at getting those instead of ZW DHA.  I am taking ZW pregnancy vits as they contain everything you need.  When do you leave for your hols?  We have family about 50miles away from San Diego, we love going over and visiting them.  

Lucky, we have our first appointment with Dr G on 8th Sept and I am expecting it to be a bit chaotic but I spoke to Dr G when I made my appointment and he was very reassuring on the telephone and explained that he was busy at his clinic but  he would be able to do all the tests and help us get and keep a pregnancy going.  

Sarah, we will be cycling with our local clinic because we have won our appeal for NHS funding and seeing Dr G for immune  treatment.

Hi to everyone else, hope you are all okay.

Well I finally spoke with the doctor this evening   , I am sure you would die and they wouldnt notice   .  Still I spoke to him and he said that he thinks I have an infection but to keep an eye on my temp and if it goes up or I start being sick to ring the hospital and get an emergency appointment.  He doesnt want me to take the antibiotics as they will upset my tum even more   but instead he wants me to up my painkillers. He has booked me in to his clinic next Tuesday as I shouldnt have these problems but he said the good news was that the scope didnt 'rip' or damage my bowel   , thank goodness for that   .Still doesnt explain the pain and other probs - thankfully the bleeding has eased up a bit today but I feel totally wiped out.  Going to have an early night tonight and try and get some more sleep.  

Hope everyone has a fab evening.    

Ells


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## Choice4 (Aug 14, 2008)

Hi girls
Ells
I think you should start taking the antibiotics ASAP, after having such invasive procedure, you really need to be on antibiotics.

Luckey
I am sorry about your experince with Dr G, If you have been following our posts then you would know that one thing is that he would run late, but would still give you as much time as you need, secondly his answering his phone is another fault he has, because he does not have a nurse, but like I stated a while ago, if we can stop calling at his clinic time, it may help reduce this problem, it is better to leave a message with reception or email him, only call if it is really necessary.
Saying that he also has a clinic in egypt and also in touch with Dr T in greece, so some calls are not really from us and he cannot help but take them.
I am not sure what exactly you wanted him to do or say about your teatment, he is specialist in immune so his thinking and treatment, would be more towards that angle.
Did you want to see him regarding doing IVF or did you want to see him to see if immune was your problem. I think it is only the tests that can show it and for him to take his next action.
The good thing is that it is only a consultation and it gives you time to think about it and see if you want to see him again.
If there was any other issue you were not sure about, may be you should email him about it.
Sorry about this!!

Lalabay
I think you should either email or call and speak to Dr G , preferable after 5pm, just to explain you were not happy with your last visit, If we don't bring this to his attention, he would never know, 

Omni
I would speak to Dr G, next time i visit, but I know he has said he doesnot want a nurse, as he does not want any mistakes, so the next main issue would be the phone call, if anyone has anything else, you would like me to raise, please let me know

Sarah
You can do a Bhcg and progesterone with your Gp, the only thing is that you would not get the results same day, But you can do the Beta, privately and progesterone on NHS

Karen
Still waiting for your Dr G vs ARGC story


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## Sprinkles (Nov 6, 2008)

Ells ~ hope you get some sleep and feel better hun      

Sorry for the ladies who've not had great experiences however I have to say I dont mind the Dr G interruptions as at least he is interested and does care about my tx which is more than can be said for my NHS clinic who couldnt care less.

DQ alpha tests not arrived yet to complete the set of recent test results, will call again tomorrow and update on results then.

Had the worst day at work ever so am sat with bottle of red and pizza to try and chill.

Have a good evening everyone


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## deegirl (Jan 17, 2009)

lalaby

Interested to read your experience, very similar to mine.  On 5 occasions over the last 2 years I have felt pregnant and then before my period the pregnancy symptoms suddenly end.  When this has happened I have felt tired, flushed, light-headed and ususally get a headache.  At first I used to do pregnancy test and always got a faint positive.  After the 2nd or 3rd time I didn't bother because I just knew from the signs and symptoms.  I recently had a frozen ICSI cycle with 2 blasts along with intralipids, steroids, clexane etc and unfortunately the same thing happened.  So now I know that I need more tests done.  After all the help of the girls on here, particularly Choice I am going to make an appointment with Dr Gorgy after some initial tests done here (N Ireland) and once I can get my notes from S*ms Clinic in Dublin.  I also have mild endometriosis.  

Dee x


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## lalaby123 (Sep 21, 2008)

thanks girls, yes theoretically I shouldn't have been charged for that consultation as well as the biopsy and if he were a shop or a restaurant i would certainly complain   but I only thought it afterwards and I am not sure if I want to haggle with a doctor...having said that I believe in giving people constructive feedback and as you say if we don't say anything he will continue as he is.....also i have sent a couple of emails which neither he or Carissa have answered so it looks like the only way to get to him is by calling him which takes us back to square one! I am packing now (got the fish oils and the aspirin  ) if i get a chance i will send him an email tonight ...which is the best email to reach him


Choice - i do think he may take the criticism better from you who he knows well - given i am a new patient he may think i am just a difficult patient and punish me with Humira    

Dee - if you were getting the faint positives then you should definitely get your immune tests done, good luck 

love to everyone else xxx


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## lalaby123 (Sep 21, 2008)

Ells, i have family too in San Diego and OC! who I am visiting also best friend in Seattle and doing a pit stop in San Francisco and Vegas....packing it in 2 weeks! 

fertile period bang in the middle which means i will feel guilty drinking a cocktail here and a glass of wine there...but i am not going to forego them as I have been on so many holidays thinking i will be pregnant and not drunk anything all to no avail....


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## Choice4 (Aug 14, 2008)

Lalaby
Drink, drink as you like and enjoy your hols, it may just happen when you are not thinking about it!!

Dee girl,
That feeling of early pregnacy sign has happened to a few girls such as omni, the best thing is at that time to increase the dose of your steriods, and if you test early thn have ivig ASAp, so as to fight the NK cells, at their peak time of wanting to attack the embs.
Dr G, follows a lot of his patients very closely and the first sign of BFP, he would give Ivig, and any follow up meds and in that way he has helped a lot of women stay pregnant.

You may not see his Stats on the HFEA, but he gets good results
Also Dr Shers in USA has no Stats on the Usa, equivalent SART site, but he gets good results.

Lucky,
If you went to Dr G only for the immune tests, then I am sure thats what he would do for you and would recommend the necessary treatment when the results are out, I hope you would have a better experince when you go back for your results
Good luck


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## omni (Dec 4, 2006)

Just want to make it clear that I am more than happy with Dr Gorgy's treatment and believe he really does care for his patients. 

Having gone through such protracted IVF treatment in the past without getting the immune treatment I needed, I feel the need to recommend Dr Gorgy to others who have had multiple IVF failures. I really don't want them to be put off by these teething problems. 

Dr Gorgy is a godsend as he offers the full range of treatments and also works with people going abroad.

I'm sure these glitches will be sorted out sooner rather than later.

Omni


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## Choice4 (Aug 14, 2008)

Omni
Thanks, you are a living example that Dr Gorgy's immune treatment does work!!


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## deegirl (Jan 17, 2009)

Thanks Choice for the advice, In my ICSI cycles (fresh and frozen) I was on 25g of steroids, what dosage should I increase to?  Usually I only feel pregnant for a day or two and then it ends   so I doubt there would be time to arrange the IVIG.  Oh I'm so negative!  I know I shouldn't be, it's just so easy to get downhearted.  My plan is to get notes from clinice, then go to a doc in N Ireland first and get some preliminary tests down and get on the NHS waiting list for IVF as a backup (waiting list is 1-2 years anyway!!), then make an appointment to go see Dr Gorgy hopefully sometime in Oct.  Hope you are staying positive and hope those wee embies are snuggling in  

Lalaby, I have already had Chicago bloods done, the first time they showed my NK cells at 28% and when IVIG was added they fell to 7% so I had IVIG with a 3 day embie transferred and got a BPN.  I then had my bloods redone which showed everything normal (wierd!) but doc gave me intralipids as a backup with a frozen transfer of 2 blasts...chemical pregnancy 4 days (felt preg for 2 days!).  Was so gutted.  

Omni, have you had a similar experience to me ie lots of early loses before period due?  Did Dr Gorgy help you get beyond those loses?
Dee x


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## superted (Sep 21, 2004)

Hi Girls

Sorry to hear the new girls stories of being a little upset about interuptions etc when having a consult with Dr G.

Unfortunately this can be offputting especially when you want to get to the bottom of your issues and go away satisfied you are working towards your goal of a baby at the end of the day.  I have to admit when I first had my initial appointment at the beginning of this year he was not as busy but still I had an interuption however he gave me plenty of time in the consult to ask questions etc so I came away with a plan.

Unfortunately he is now getting a lot busier and his success is kind of the reason for this.  I find it fantastic that you are able to speak to DR G directly rather than through someone else and he does take the time to listen and answer your questions.  However he knows his stuff and he is doing his best for us he gets involved with us all rather than us just being a number like at other clinics.

So girls please persevere you are in very good hands.  If it were not for Dr G I would not be where I am now or with all the wonderful advice from the people on this thread.

superted x


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## Sprinkles (Nov 6, 2008)

Evening ladies,

Well the results are in....

NK cells have reduced by 1% (boo) now 27.1% at 50:1
CD3 have gone up (boo) to 85.2
CD19 dropped (yay) to 7.1
CD56 dropped (yay) to 10.5
CD19+CD5+ dropped (yay) to 1, from 11.3 woo hoo!

So something must have been right somewhere on last tx.  New tests I think I understand but could do with some reassurance:

intralipids 50:1 7.4
intralipids 25:1 4.5  I'm hoping this is good and I react well to intralipids?

LAD Negative
IgM T - 1.0
IgG T - 1.0
IgM B - 12.8
IgG B - 12.2    Rubbish so indefinate need of LIT?

DQ Alpha
DH 0102, 0303
Me 0201, 0501  Think this is good as we have no matches at all!

Need to book consultation with DrG over phone to go over but think its LIT definately but think we can go to Dr Armstrong, if I can sort DH blood tests out without having to go all the way to London for them.  Anyone know if Dr G refers you to DrA first?  Then you ring and make your own way with appointments from there?


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## Delia_B (Jan 21, 2008)

Hi Ladies

Can I please join you?

I had my first appointment with Dr G last Friday to get the ball rolling with immune testing. As you can see from my signature we have had several attempts with no real success. I had been thinking about going to see him before, but my appointment with my Gynecologist last week convinced me to do it. She said he was the man to see.

We really liked him - our appointment was last thing in the afternoon and we felt he had all the time in the world for us. Explained everything and answered all our questions. We had already had some of the level 1 tests done with our current clinic - which showed up nothing and he arranged for all the others to be done. Went back on Tuesday this week for all the blood tests. Follow up is on September 10th.

I have the Alan Beer book and trying to get my head around it. I'm sure when I get my results I will have loads of questions for you.

There are a couple of names here I recognise; Cat from the London Girls thread and Choice I'm not sure if you remember but we "met" last November time, we had had similar experiences with LFC and you were so kind and knowledgeable after we had our abandoned cycle. Congrats on being PUPO and I really hope it works out for you this time.
Looking forward to getting to know everyone else

Great to see so many positive stories on here as well.

Take care

Nat x


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## sarahh (May 20, 2006)

Just a quick one from me 

Sorry to the ladies who've not had +ve experiences with Dr G.  I'm afraid the clinic is busy sometimes bordering on chaotic at times BUT please bear with him, he is caring and he is very knowledgeable.  He does know a lot but sometimes it takes a while to know about how he communicates.  Sometimes you feel that he doesn't give much away & wonder whether it is all going in but I'm convinced it is.....  

I know the chaos has got to me on a few occasions but tbh I think you are going to get that anywhere. 

Anyway, not much from me, been out today to try to make my mind off things but feeling stronger af type pains .....    but as we know, could mean anything.  I'm trying (soooooo hard) not to read anything bad into it but ......... 

Choice - thinking of you              

Ells - thanks for your PM.  Hope your tummy feeling a bit easier today?  You've had a rough wk u poor thing   

Sarah x


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## Choice4 (Aug 14, 2008)

Hi Girls
Nat74, 
Welcome on board, yes i remember you, I am happy you had a good consultation withDr G, he is very nice, and I hope your results would be out soon.
The Alan Beer's book would make more sense when you get your results, but feel free to post any results or questions here and we can help you.

Sprinkle
It is good you have got your results, I did not see your TNF alpha, is this normal.
I am happy intralipids works well for you, but you may want to combine it with a bit of ivig, just to boost things.
Yes, I think the main thing you need is LIT, if possible i would suggest you go to greece for Donor LIT as they follow the Beer's protocol, and it lasts in your system for 1yr.
I did not have a match with DH, but i went to greece

Sarah thanks, hope you are doing ok

As for me, had my car taken in for repairs and was given a courtsey car, so i have to be careful with this car!!

Hi all


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## Krispichick (Nov 27, 2008)

Hi Ladies

sorry its taken so long to come back on here. I wanted to thank you all for responding to my request for info on cycling with Dr G. Really nice of you all and really helpful. Making all the blessed decisions is one of the worse things about all this. Constantly 2nd guessing everything you do!

well after a lot of soul searching and discussions with DH have decided to stay at ARGC - mostly because this may well be our final attempt and they have all the experience with me IYSWIM. It was a tough decision as I did really like Dr G and found him very easy to talk to. So hoping to cycle in January 2010 (which seems like forever away, but really its only 4 months).

thanks again for all your thoughts on the matter. Best of luck to you all and let hope that the months to come bring us all the bundles of joy we so wish for

Lots of Love 
Krispichick
xx


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## Choice4 (Aug 14, 2008)

Krispichick
I am happy you and DH, have made a decision, you feel very comfortable with.
Jan 2010, is not far away, I wish you all the best, and do come back and give us the good news, soon!!!
All the best!!


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## Maarias (May 4, 2005)

Hi ladies,
Hope you are all keeping well.
I'm sorry I'm not very good at posting on here.
I am watching out for your news Sarah and Choice   Hope you are both getting plenty of rest.

I had ivig drip again today and as usual it took me about 4hrs as I react so badly to the first bottle -usually feel sick and then really really shivery...really makes me worry about the whole thing...

I spoke to Carissa and Dr. G about getting some beds and blankets in (like ARGC) for the back room for ladies like me (as I know many of you are able to take the drips far better than me!). Apparently the back room is going to be a recovery room soon with beds etc which is good news!

I am a bit concerned that not enough monitoring going on during the drip (other than sec taking blood pressure). Dr. G is so busy now he doesn't always have to time to come in and check. When I was ARGC (I never had drips there) but I noticed that nurses were always on hand to see how ladies were doing. After my reaction to drip today I really thought he needs to do this as well. I will mention this to him at some point. His sec. is lovely (left me the phone to call her if I felt unwell) but think a nurse should have been there, as my reaction today at some points was a bit scary...

Anyway, hope all is well with everyone.
Mx


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## siheilwli (Jan 18, 2006)

Nat - hi! Got to say - didn't bother trying to decipher the Beer book until the results came... then it all made sense to me!   I'm about to go and see my GP this morning to see whether she'll be amenable to giving me an NHS prescription for ANYTHING at all... maybe the clexane, as factor V leiden is something all docs recognise. Not holding out much hope, but we'll see.

Maarias - sorry to hear about your reaction, good for you for pushing for a bit more medical attention.

Choice - drive carefully! 

Sprinkles - where are you based - have you decided to do PA LIT or are you considering Greece? I think that Dr G told me that he arranges the LIT with PA, but not sure about that.... someone here can probably answer that one better than me.

big   to everyone else here
Cat
x


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## siheilwli (Jan 18, 2006)

Quick question girls.... my humira arrives today, but I've got a bit of a cough and chest feels like it's going to develop into something.... do I need to phone Dr. G to ask advice, or should I wait until Monday to do first jab?  Any problems with starting the jabs if you're not well to start with?
C
x


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## Toffee Girl (Mar 20, 2009)

Hello All

Gosh - you guys get through pages whilst I am not looking!!   Hope everybody is OK.

Am waiting patiently in between transfer and test ....  can someone please clarify for me - in what circumstances are ladies upping their dose of steroids?  Is it around implantation time because you start to feel a cold coming on?  And what dose do you go to?

I have started to feel a pulling sensation (am on Day 21 today) and as if I might be starting with a cold - should I up the dose?

Lots of love

Toffee Girl x


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## Choice4 (Aug 14, 2008)

Hi girls
Bfp for my coconut
Hcg was 113
I am at dr g having ivig


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## Maarias (May 4, 2005)

Vow, well done Choice!!! I couldn't be more pleased, you've put such a lot of effort into this cycle!!


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## Cath34 (Oct 14, 2008)

Greeting from the Sunshine state ladies.

Choice - massive congrats to you hunni        I knew this was going to work for you. Any chance of more than one with that result
I bet Dr G is so happy for you. You can now be the one to replace Carissa when she leaves in Nov!!!!   and help the rest of us get a bfp!!

Toffee Girl, I would up them to 40, I did on days 6,7,8. Day after blast ET and I wasnt feeling ill, but implantation is around then so it wont do you any harm anyway and my friend did it as I did it and she is now pg and I think this may have helped, obviously we dont know but its worth a shot. This is the time your body would start to fight it if it wants to. Hope you are hanging on in there on your 2ww.

Sarah - hunni how are you? I bet you are fed up with waiting. Hang on in there hun. Any news? How are you feeling? Great news about Choice. 

I wish I knew what the hell went wrong with my last cycle!!! Its baffling me as when  I did my repeat  NK test last week my Nks had dropped from 34% to 11% with 2 IVIG and I IL which I was amazed with and really pleased, although IL dont really work for me. Oh I dont know, it just wreck me!!! Anyway, plenty of sunshine, shopping and food here for me to distract me from thinking too much. Although no topping up my diamonds this time due to cost of tx!!  Never mind maybe next time!! lol

Cozy, how did you get on with Dr G? It was lovely to meet you.

Karen- How are you hunni?


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## superted (Sep 21, 2004)

Woo hoo  Choice well done fabulous news and even better I saw you today as I was at Dr G's having my dose of intralipids.  Had I have known I would have congratulated you but when I came out to ask if you were 'choice' on FF you had someone else sitting to you and chatting and I was in a rush as I had to be somewhere.

Aren't the mirrors and piccies fab!!!!        

Hi to everyone else have a good weekend.

Oh and one question my CD 3 has come back elevated just about the norm levels although Dr G does not seem to worry too much about this he is more concerned with the other results.  Can anyone tell me is this one related to your thyroid


superted xxxxx


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## omni (Dec 4, 2006)

Yay for Choice!!!

                  

SO happy for you!!!

Toffee - can't do any harm to increase to 40 for a few days but if it does get worse - proper sore throat - or other immune - type reaction - you might want to consider booster IVIg. Dr Gorgy in 9.30 tomorrow. I am considering extra IVIg as CD56 up again to 17.6 (bloods taken wednesday - a week after IVIg) but I might wait until he returns from abroad Monday week.    

Cath - great that you are taking a break in the sunshine. I think you did all the right things immune-wise. I think it will be next time hun!

siheilwli - I would definitely check with Dr G - his last day tomorrow before going away for a week or ring him on his mobile.

Sarah - hope you are holding up    

Omni


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## Maarias (May 4, 2005)

Omni,
Do I take it you think it's a boy! 
Mx


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## siheilwli (Jan 18, 2006)

Choice wonderful news!!! 
Thanks for the advice Omni. Left him a message on his mobile.
Cat


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## Delia_B (Jan 21, 2008)

Choice that is fantastic news congratulations

         

Nat xxx


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## s1165 (Jan 2, 2009)

Hi

can i ask a quick question as I have been googling and trying to look up in Dr beers book but dont feel I know what I am looking for.

I have had some level 1 tests done by Consultant on NHS - took Choices list in and asked for them all.

It took weeks to get them back and nurse said fine - one was a bit high but dont worry about it. Then asked her to post so I could see them and its taken 5 weeks to arrive!! 

Anyway all look ok except IGm which is 2.90g/l  on one sheet with 0.50-2.0 being normal ( there is an H next to it - which I presume means high??

then under Thrombophilia screen
ACA Igm 17.0 GPL-U/ml and should be under 10. (10-40 weakly positive)

Lupus Anticoagulant Ratio 1.1 (0.9-1.2) Please repeat ACA - no what does that mean No one has asked for repeat?

very confused

Can anyone shed any light on this - I know if I ring DR they wont have clue and If i hadnt pushed and pushed nurse to get results would have thought all fine Thanks
xxx


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## deegirl (Jan 17, 2009)

Excellent news Choice!!!  So pleased for you.  Rest up!

Dee x


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## Choice4 (Aug 14, 2008)

THANK YOU ALL SO MUCH FOR YOU WELL WISHES!!
YES DR GORGY WAS VERY HAPPY FOR ME!!

I PRAY THAT THIS POSITIVE NEWS WOULD CONTINUE FOR THE REST OF US HERE.

THANK YOU AND GOD BLESS!!


----------



## Han72 (Feb 15, 2007)

OMG Choice!!!               you've been a tower of strength and a fantastic source of help and info for those of us struggling with all this immune stuff and I'm so pleased to hear of your BFP!

I'd actually popped in here to pick your brains (in fact I was at the clinic today myself - gutted I missed you!) but how fab to find you here posting such excellent news 

Basically I've just got LAD and DQ alpha matching results back, I'm in London and my trusty Beer book is at home in Paris, we weren't in a position to fork out for the follw-up fee so I just took a copy of the results and was wondering if anyone could help me interpret them 

LAD - 
T-Cells IgM - 2.6%
T-Cells IgG - 1.0%
B-Cells IgM - 17.2%
B-Cells IgG - 9.2% 

Dq-Alpha DH: 0102,0201
Dq-Alpha Me: 0104/0105,0505

Now what on earth does that all mean?!  Answers on a postie puhleeze!

Thanks all and apologies for no more persos but we're actually at a friend's house right now and I'm being extremely anti-social as it is!!!

xxx
PS for info my NKs are usually normal but TNFa is generally raised...

xxx


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## deegirl (Jan 17, 2009)

Choice

As you know I will be making an appointment with Dr Gorgy in due course (once notes through from clinic and after some basic tests done in NI first).  Just a wee question - I know you think very highly of Dr Gorgy, did you cycle with him or choose not to?  Just wondered why you chose SIRM rather than cycling with Dr Gorgy?  Guess what I'm trying to say is who is better Dr Gorgy or Dr Sher?!  Also are there benefits of SIRM rather than the likes of LWC or ARGC?  Soooo many decisions!  

Thanks!   
Dee x


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## ells (Mar 19, 2008)

Choice, that is fantastic news hun [fly]             ^dancing spo[/fly]t^ Congratulations, I bet you are on cloud 9. What a way to start the bank holiday weekend.

Cath, sounds like you are having a lovely time in the States. Shame about the diamonds!!!

Sarah, how are you hun?

Hi to everyone else, only a very quick post from me. Still not 100% going to see the specialist on Tuesday afternoon - feel really pants at the moment very weak and tired but I am not really surprised what with the lack of sleep and the amount of trips to the loo I have had to make ( over 20 just today  ) .

Hope you all have a fabulous bank holiday weekend.

Ells


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## Choice4 (Aug 14, 2008)

Nifxo
From your results, it shows you have, very low LAD , especially the B cell at 9.2%., so you need LIT
You don't seem to have DQ match with your DH, so you can use him for your LIT.
But my advice is to do Donor LIT in greece, as it helps to bring a different thype of antibody into your system to fight the enemy.

Deegirl
I have had all my cycles in Usa, never in UK, I think they have less rules and regulations. And can transfer as many as you want ( thats my opinion)!!
I would be writing my story one day,!! but the long and short story is that I cycled in SIRM Oct.last year, even before i heard of Dr G.
But because of thin lining my embryos were frozen, and i was told by Dr Sher to find a surrogate, as my lining could not get any better.
So I met Dr Gorgy in Jan 09, and have worked with him and other Drs to improve things, as i could not bring the embryos back to UK, because of Hfea laws, i decided to go back and put them all in, with a lining of 20mm.
( thats the long and short of the story)

Sirm, don't do the full immune according to Dr Beer, they don't do LAD, Humaria, and Ivig, they are only doing intralipids, so i did all that with Dr Gorgy.
But they have good protocol, and know how to taylor it to individual 
responses.

Sally 
From your level 1 results, i would not worry too much about the little rises in the results, I think you should now get Level 2 done,and the treatment here would cover any anomaly in level 1 tests.


----------



## deegirl (Jan 17, 2009)

Well it worked for you Choice!  Thanks for your help. x


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## omni (Dec 4, 2006)

Maarias, LOL

I didn't even realise there was a choice of bundles for the stork! It's only when you said this that I realised there are 2 storks - one with a blue bundle and one with a pink bundle. They are not even located together in the smiley list.

Maybe it is a sign that Choice's 4 blasts have each split into 2 and she is having eight boys  

Yes, our very own octomum  

Omni xx


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## Choice4 (Aug 14, 2008)

Yes to Octo mum!!
Dr G would be shocked when they start popping out!!!


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## Sprinkles (Nov 6, 2008)

Wow congratulations Choice brilliant news here’s to a happy healthy 8 months x   

Krispichick ~ good luck for the future x

Mariaas ~ sorry you’ve had bad reaction to IVIG hope you’re ok now.

Siheilwli ~ am based in Manchester so had originally made the decision to go to Dr Armstrong as it was easier travel wise but have changed my mind and think am going to go to Greece.  I had sore throat when I did my humira last Friday and am ok now.

Choice ~ my TNF are high too 51.8 so hopefully the IVIG, intralipids and humira will bring it down, oh and the prednislone

Superted ~ my CD3 has gone up since my last tx and DrG wasn’t worried about it either its 82 I think, he said all the mixture above should bring it down.  Think its your general immune system CD3 I don’t have thyroid issues so not sure if its that.

Cath ~ hoping the sunshine is doing its trick


Hi to everyone else, had my follow up consultation today on the phone - 10 minutes £90 - and everything I suspected was right, but even though I dont have a match with DH at all I am really inclined to go to Greece for LIT especially after what everyone has said.  So asked DrG if he contacts Dr Tsargaris or I do and he said he would when he comes back off holiday but if I can sort out getting there might contact DrT myself.  Questions regarding LIT best left to the LIT thread I guess, so will pop over there.  Really hope I'm doing the right thing.

Love to everyone, once again huge congratulations Choice x


----------



## Cath34 (Oct 14, 2008)

OMG Can you imagine 8 little Choice's running around. How Wonderful would that be. I may take you up on your lovely offer to help me get a bfp. I feel like I've hit a brick wall and like Omni said it should really have worked last time with the immune tx and 2 blasts but maybe my body was traumatised after the EC as I really did suffer this time. Who knows!! 
God I could spend on a baby out here!! Its shocking the price of things over here, our country really rip us off!!!


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## Choice4 (Aug 14, 2008)

Cath
Don't worry, you time is coming next, I would work closely with you and help out as I can.
Like you said maybe your body needed a bit of rest after the EC, FET is easier on the system, so, hopefully this would be it for you.!!
No shopping on baby, there is time for that, shop on yourself for now !
Diamond, diamonds are forever!!

Sprinkle i replied you on the LIT thread!!


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## sarahh (May 20, 2006)

Hi all - Choice, I said it all in my PM - well done you!!! Congratulations!  So hoping I'll be joining you on Weds!  

I'm still struggling tbh - having the pains and its not doing much good for the PMA (which vanished about 10 mins after ET      BUT have come to my mums and seen my DD today so feeling a bit better.  Just hoping Weds comes around quickly to put me out of my misery.  Choice - wish I had your laid back attitude, I find this 2ww so hard!  Perhaps next you need to give me a lesson in PMA during 2ww!!!  

Ells - hope you been resting as much as possible, you taken the anti-b's yet?  

Well, am v. tired after running round after DD this pm so off to bed!  

Have a lovely bank hol weekend everyone and keep sending me the   - its all that is keeping me going!! 

Sarah x


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## s1165 (Jan 2, 2009)

HI Choice

thank you for taking time and trouble to reply to me particularly on such a busy day for you.

xx


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## Toffee Girl (Mar 20, 2009)

Choice

So wonderful to hear your news    !!  Well done girl!!  

Let's hope Sarahh gets some of the same on Wed.

Take care of all those little Choices in there - how many do you think there are?

Toffee Girl x


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## lalaby123 (Sep 21, 2008)

Choice fantastic news so happy for you and u must write that story it will becom a bible!! Take it easy and sorry no emoticons as don't kno how to do them from iPhone but here's some kisses xxxxxxxxxxxxxxxx


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## Choice4 (Aug 14, 2008)

Thank you all

Would write my diary/ book soon!!

I also would like to mention I was also on GLUTEN AND WHEAT FREE Diet!!( as they say it helps reduce inflamatory responses in your body) 
( I don't know if that made a difference)

No Bread, no cake, crisp, biscuit , sweets,, no fizzy drinks,no Pizza etc.
Only used the FREE FROM SECTION ,of  Tesco, Asda, morrison etc, had gluten free pasta, only used brown rice, Tesco value cornflakes(maize only), and also gluten free section in health food stores!!


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## Newday (Apr 27, 2005)

congratulations Choice. I am having a bit of a wobble when I went to see Dr G I didn't have the antibody thing tested as we have donor embryos so no point testing against DH but wondering if I should of had it done anyway?
Dawn


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## Cozy (Jul 17, 2008)

Choice,

 on your          

I hope the rest of your pregnancy is happy and healthy    

Cozy


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## Luisa8 (Apr 20, 2007)

Just popping on to say  a massive CONGRATULATIONS to Choice...      

Lots of love
Kath 
xxxx


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## Cath34 (Oct 14, 2008)

Hi all, hope everyone is bearing up on their 2ww?

I'm sitting in the hot sun at 8am in the morning by the pool in the villa   It doesn't get much better than this I have to say!! Its definitely what the doctor ordered   
I hope the weather back there isnt too bad? I think it is in Wales!!!!

Choice - are you still on cloud 9? I'm sure you are, enjoy it hun.

Sarah, how are you doing lovely? How are you feeling, any better, I hope so.

Toffee - how about you? Not long for you both now, fingers crossed its a triple crown of bfp's. Apparently I broke his string of bfps but thank God for Choice to start them back again  
Love to all.  xx


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## Han72 (Feb 15, 2007)

Hi y'all, just popping on again quickly as I'm being anti-social again!

Cheers for the response Choice - I just looked up the "normal" ranges for LAD here: http://www.sharedjourney.com/define/lad.html and am horrified at how low my numbers are! I was surprised that these (the normal ranges) didn't appear on the copy that Carissa gave me but am now wondering whether this had been deliberately blanked out on my copy in an attempt to ensure that we come back and pay for the follow-up? Because they do normally show that info don't they? At least they did on all the other immune tests I've had done... hmmm 

Cath mate - that sounds faaaab! You lucky thing you! I know that "brick wall" feeling and it's difficult not to drive yourself nuts with the whole "but WHY didn't it work?!" thing... I wouldn't be surprised if the horrible experience you had at EC was related but the good thing is, now you've got the immune bit sorted out, and you know that next time round ECwon't be quite so stressful     it's gotta work!!!    to you hon and enjoy your hols 

Dawnie - sorry hon I don't know enough about this LAD business to say whether it's still relevant with DE...? I bet Auntie Choice knows tho! Or maybe you could ask on the immunes board? On a similar note, I was wondering whether DE would have worked for me given the situation with my LAD? I mean would it have failed regardless of whose eggs they were...?

Sarahh - sending you tons of      ! Stay chilled hon! Do you have the Zita West relaxation CD?

Oh gawd sorry girls no more persos, am being summoned to assist in the kitchen 

xxx

/links


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## omni (Dec 4, 2006)

Hi Dawn,

I have replied to your PM

Omni xx


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## Toffee Girl (Mar 20, 2009)

Hiya All

(Cath - so lovely to think of you enjoying sun sea and sand - I am sure it will make you feel more than a little better!  Very good timing.  I wish I had another hol to look forward to at the end of next week!)

Re the issue of LAD tests and normal ranges - no the normal ranges are not printed on the test results sheets, so its not Carissa not reading them.  It is the T-cells IgG+ (usually the second one down on the list) and the B-cells IgG+ (the 4th one down) that are the critical ones.  They want to get these to above 50.  You are not the only one with very low counts, so don't feel you are on your own.  Any of these counts can fluctuate slightly from when you re-tested, but I am afraid to say that before I started LIT my counts were 5.4, 8.6, 20.7 and 7.8 and then after 2 lots of LIT in Athens, they went down to 2.3, 3.3, 15.8 and 8.3, which I was horrified at.  Dr Tsagaris said some external stimulant may have affected any improvement e.g. taking prednisolone too close to treatment, but I have checked my diary and didn't.  The answer is to keep doing it I think!  Omni also had low counts and she is happily pregnant now, so it's only part of the picture.

Dawn - As for does LAD/DQ count with Donor Egg - It would play a part - if you have low levels of the antibodies that are supposed to protect the embryo, then you still have this as an issue whether the embryo is yours or a DE as the embryo is still a foreign entity.  For example - I already have a DS (he is 10), but have not been able to have another.  My DH and I have no DQ alpha match at all (ie we have no problems as a result of genetic over compatibility, which lots of the couples have), but something has switched my immune system into over-drive after the first pregnancy. The cause of the problem is different, but the issues become the same.  And I believe the more chemical pregnancies you have the worse it becomes, but I am only speculating on that bit!

Your body then sees the embryo as a foreign body that needs to be eliminated, it puts out high levels of NK T Cells which in turn spray out TNF-a to try and kill off the embryo.  This is most likely the cause of our 7 years TTC.  I have three lots of LIT (2 in Athens, 1 at Portland), and have also just had IVIg and intrallipid infusions in run up to ET, then clexane, prednis, aspirin, cyclogest afterwards.  If you were with a clinician who did not believe in LIT, then the overactive NK Cells and TNF-a would be dealt with probably by IVIg plus the other drugs I listed.  Whether the doses would be enough, I can't say.  You could have your levels tested anyway now to see where you stand.

Hope everyone else is happy and healthy - keep thinking those positive thoughts  

And yes, Choice, please do a summary for people of what really made the difference treatment-wise for you this time, as I think we would all really like to be up to date on what you think helped.  Omni - if you are up for doing the same, feel free!

Lots of Love

Toffee Girl x


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## sarahh (May 20, 2006)

Nix - thanks for the   - I'm trying to chill really I am !!!!  But this mind of mine won't let me!!!    I would def recommend Athens over London for LIT as you can re-test your levels so after spending all that money you know whether your body (or your levels!) are right to start treatment.  Whereas the London method does not allow you time to re-test so its a gamble whether it has worked or not.  In my mind, I'd much rather know that I had managed to increase the levels (in my case 2 nearly did the trick but needed a third booster - I only didn't re-test after that because of cost / and fact that it was too near to cycle to do anything about it). 

Off to bed for me, feeling very tired.  Sorry no more personals.

Sarah x


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## Suzie (Jan 22, 2004)

I have deleted some posts as this should not have spilt over onto this thread

End of discussion on the matter 

 to all
xx


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## Choice4 (Aug 14, 2008)

Suzie
Thank you, we Dr Gorgy's girls would continue on this thread as happy as before!!


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## Cath34 (Oct 14, 2008)

Hi all, 

I have been reading and trying to keep up to date with everything!!! Lots going on at the moment eh?

Toffee - I hope you are bearing up on your 2ww?

Sarah - you too hun.  

How is everyone else doing? I hear the weather is awful back home? 

Big hugs to all xx


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## Toffee Girl (Mar 20, 2009)

Hiya Cath (and Ladies)

Yes - lots going on on FF today!!  

I am bearing up fine so far - having recovered from my blip over 18 eggs but only 2 embryos.  Think that will be a good thing in the long run if we have to go again - the more TNF-a exposed eggs I can get rid of to allow the healthier ones to come to the surface, the better!!  PMA or what

Hope you are still enjoying the hol.  Yes, I think lots of places have had some rain today.

Hi to everyone else (Sarah, I hope you are hanging in there) - I have been busy posting on the LIT thread if anyone is having trouble getting off to sleep.....

Good night  

Toffee Girl x


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## Donkey (Nov 24, 2007)

Morning

I'm afraid that I've only read the last 2 pages as I've been away since the 14th and have only just got back, but HUGE congratulations to Choice, I am so thrilled for you. Your perseverance has paid off and you offer hope to us all.

Cath I am so sorry that it didn't work for you, we all understand your pain.

Well I have had my results back from Dr G in the post and I have been looking in Dr Beer's book bit I wondered if anyone could please give their opinion. We have an appt at Bourn Hall tomorrow (NHS and 1st one with them) and we want to do shared care so I'd like to have an idea of what to tell them.

MTHFR, Factor V Leiden, Factor II Mutation - Prothrombin - All negative

TH1:TH2 cytokine TNF-a:IL-10 (CD3+CD4+) 19% 
IFN-g:IL-10 (CD3+CD4+) 10.8%

DQ Alpha Me - 0102,0201 (1.2, 2.1)
DH - 0401,0501 (4.2,4.2) Dr G wrote the second figures in pencil

NK assay w/Intralipds 50:1 13.1%

NK Assay (% killed) Panel - I've only included the ones Dr G has highlighted
50:1 26.2%
CD56 23.1%
CD19+, CD5+ 50%

LAD
Flowcytometry weak positive
[T cells] IgM+ 5.9%
[T cells] IgG+ 35.9%
[B cells] IgM+ 11.1%
[B cells] IgG+ 9.2%

Thank you, I will try and catch up later

Donkey xx


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## Sprinkles (Nov 6, 2008)

Hi ladies

Hope everyones had a good bank holiday weekend, oh and some glorious sunshine in the states Cath, very jealous its pants here not stopped raining since left work on Friday evening - boo!!

Having a nightmare with my computer and am borrowing DHs at moment.  Am waiting for a reply from Greece to see if can go a week on Tuesday for LIT, going to ring tomorrow to see if ok.

I need to send my blood down in a couple of weeks to see if humira has had an effect.  Anyone done this before?  If so do you send it by courier for general am delivery or for 9am?  If 9am will there be someone there to get it?


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## sarahh (May 20, 2006)

Sprinkles - if you send the blood to TDL directly then there would be someone there before 9am.  Dr G did say to me if I could get blood taken before special delivery post goes from wherever you would send it to then you can use royal mail special delivery as long as you make sure its packaged up well etc.  That costs a fraction of the price of a courier obviously.  

Donkey - I think you will be recommended to have LIT with those levels (they like the IgG ones above 50).  

I'm not sure but I think Humira may be recommended for the TNF-a.  It also looks as though you are likely to be on steroids (Dr G uses Prednisolone) and will need IVIG or Intralipids (you seem to have a reasonable reaction with Intralipids which is good as much cheaper but can't see what your levels come down to with IVIG).  

Toffee Girl - I'm ok, just waiting to get Weds over & done with!  Glad you have kept up with the PMA.  I'm doing much better.  Just resigned myself to what will be will be!! 

Choice - hope your news is sinking in nicely.  

Off to bed for me.  Nite all,  Sarah x


----------



## Trueblood (Aug 31, 2009)

I had egg collection (Donor) on 20 Aug 13 eggs, 10 Mature, 7 Fertilised.  Had to rush in on Sunday 23 Aug only 2 eggs were viable for ET and where no worth risking for blast.  1 Grade 2 8 Cell and 1 Grade 2 7 Cell.  Must have been a bad week in the embro lab.

No symptons only sore boobs. No implatation bleeding and not feeling very positive.

Had LIT wit Mr Armstrong. 1 Course of IVIG and 1 interlipids.  Currently on Gestone Injections and cylocest.  Test day Thursday.

History includes endon (largest Cyst 12cm x 20cm, frozen pelvis) since then had a tubes cut but not removed due to previous endo probs.


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## Maarias (May 4, 2005)

Suzie, thanks for removing those posts, I couldn't agree more... 

Hope all is well with everyone.
Mx


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## Choice4 (Aug 14, 2008)

Hi girls
Hope everyone had a good bank holiday and back to work now
Wishing you all more bfp
One day we would think of dr gorgy's girls meet up!! As we are now growing in numbers


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## siheilwli (Jan 18, 2006)

Omni - thank you again for telling me to phone Dr. G because I was worried about starting humira with a cough. It got worse over the weekend and developed very quickly, suspect it might have been a very mild dose of swine flu, not sure though. Feeling much better now, although not 100%. Anyway Dr. G left me a message telling me not to start the humira until I feel better.
How is everyone?
Cat
x


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## Choice4 (Aug 14, 2008)

Shelly welcome on board, sorry to hear of your story
I am happy you have decided to look into immune issues, and i hope you would find answers soon!!
Yes Dr G would do both level 1 and 2 tests for you, but you may not need all level 1 tests he would decide. I think the level 2 tests are more important and the treatment for level2 covers most level 1

Cost wise, I am not sure but if you check on other Dr G's site here part 1,2,3 you may find out, or some of the girls may come along soon

The phone number is 0207 2241880, call and make appointment, no waiting list, best thing is to arrange to see him on a mon.tue or wed before 12, so you can send you blood to usa, the first appt, and blood test maybe  about £1500-£1800
Dr G is away this week, but back on the 5th of sept,for 1wk, then off again for 1wk
You can see him anytime and come back for the blood test if you cannot do it same day,

Dr Beer's book would even make more sense when you have got your results back, so don't worry
Goodluck


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## omni (Dec 4, 2006)

Hi Cat,

Sorry to hear of your cough and having to postpone humira. Hopefully, it was a blessing in disguise (it is good if you have been exposed to swine flu now before you start your cycle proper).

Welcome Shelley!  Here are some of the costs I know off the top of my head: £120 for 1st consultation. I was there for over an hour. (£90 for any follow up consultation). 
Chicago "level 2" tests: NK assay £365; Cytokine TH1:TH2: £310. But these two are cheaper if you do them together (I think you now pay an extra £50 on top for the new test to check how well Intralipids work in reducing your NK cells). LAD £200 and DQ Alpha £58 x 2 (i.e., you and your DH both test). MTHFR: £250. Not sure of others. Hope this helps. 

Hi Cath. Try not to worry to much about no symptoms - every person is different and every pregnancy is different - I had no symptoms this time and am now 14 weeks. Goodluck for thursday  

Sprinkles - any luck hearing from Greece yet?

Donkey: Your NK cell activation (50:1) is high but you are lucky as far as Intralipids appear to work well for you - so you probably won't need the expensive IVIg. LIT would also be advisable (the most important is the IGg+ Bcells this should be at least over 30% and ideally over 50%. Yours is 11.1 (mine was 4). Good news is you don't appear to have a blood clotting problem, you don't have a problem with TNFa - so no humira, and you do not share a DQ alpha number with your DH. 

Hi Choice - Sorry, I have been tied up with something big I had to finish for work - will PM you.

Thinking of you Sarah  

Omni


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## Ocelot Cub (Mar 31, 2008)

Good evening girls,

I am a 'immunes issue' newbie also under Mr Gorgy. I really need your help as I have no idea what i am doing. I actually took the test to prove I didn't have immune issues and so was quite suprised to see that I did. I have POF and know that anything I do is probably a long shot but I have to try it all for my peace of mind. I also know 2 girls who I met through this website that took steriods for their high CD19 + CD5+ cells along with high doses of DHEA who subsequently conceived when every specialist told them to give up. The thought keeps me going. 

I wonder what you think that Mr Gorgy will suggest when he sees my results, they are as follows:

NK ASSAY (% Killed) panel

50:1 - 32.7
25:1 - 16
12.5:1 - 8.8
IgG cone 12.5 50:1 - 19.6
IgG cone 12.5 25:1 - 14.2
IgG cone 6.25 50:1 - 17.1
IgG cone 12.5 25:1 - 15.3
% CD3 - 78.6
% CD19 - 2.3
% CD56 - 14.1
% CD19+ cells, CD5+ - 30.4

NK Assay with Intralipid

50:1 w/  Intralipid 1.5 mg/ ml - 17.6
25:1 w/ Intralipid 1.5 mg/ ml - 11.5

TH1: TH2 intracellular cytokine ratios

TNF a (CD3+CD4+) - 25.7
IFN g (CD3+CD4+) - 8.5

Any help would be so appreciated.

Ally


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## sleepy dwarf (Aug 1, 2008)

Hi girls

Don't know if any of you can help but some of you may be able to re-direct me if not.  I am on Prednisolene for NK cells and am currently weaning off (I'm 15 weeks pregnant), my clinic advised me to go from 25mg that I've been on for past 13 weeks to 20mg for 4 days, then 15mg, 10mg and then 5mg for 4 days each.

I was at my GP this morning to get my inhaler prescription and she said I shouldn't just stop Prednisolene at 5mg that my body could go into what she called 'Hyponatraemic Adrenal Crisis', which is basically some kind of shock.  She has recommended a week of 2.5mg and then a week of 2.5mg every second day.

Can any of you advise, have emailed my consultant at the clinic but waiting to hear back from him, will ring again in the morning.

Thanks, Sleepy x


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## LHR72 (Jan 6, 2008)

Hello ladies,

I have been to see Dr Gorgy for the first time in early Aug and got my results last week (outlined below).

NK assay 50:1 = 20.2% (with IgG down to 7.6% and 9.9% at 12.5 and 6.25 concs; no response to intralipids)
LAD flowcytometry negative (what does this actually mean)
T-cells IgM+ 1.1 / T-cells IgG+ 1.2 / B-cells IgM+ 23.7 / B-cells IgG+ 7.6 (Dr G said this last one was the important one)
TH1:TH2 ratio TNF-a:IL-10 = 34.1
DQ-alpha me = 0102, 0201; DQ-alpha husband = 0102, 0302
MTHFR positive heterozygous

he said i need to have LIT treatment, IVIg and Humira, as well as clexane and prednisone. He also said i had to decide if to do LIT here or in Greece, so i have been reading this thread for info! seems to me that Greece is preferred as you get to know if it has worked b4 doing the IVF cycle. i will contact Dr T by email i think.

Just wanted to ask a couple of questions which i am not clear about:
1. what is the cost of the LIT in Greece?
2. if i got a BFP, would i have to have it during pregnancy - how often and for how long?
3. ditto re IVIg?
4. can i get prednisone on the NHS? (i am doing an NHS funded IVF cycle in Manchester St Mary's).
5. it's all so [email protected]@dy expensive - any cost cutting tips? what's the total cost i should be looking at?
6. when are the upcoming clinics with Dr T? how long do you have to wait to get in to a clinic?
7. even tho i can use DH's white blood cells, i read on here that donor is easier - why?

thank you, this is very new to me and am struggling to get my head around it all!

LHR


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## Donkey (Nov 24, 2007)

Hi Girls

Thank you sarah and omni,you have confirmed my suspicions!  We shall go and see Dr G but I noticed that he is holiday for a couple of weeks.  I had my nhs appt today and they were totally against immune stuff and said it was too contraversial,won't even prescribe pred or gestone, but are happy to do shared care and turn a blind eye.  So I have to have Zoladex for 3 months and then cycle at the end of november.

Choice, I hope you're looking after yourself.

Hi Ally and almond if you're lurking  

Thanks again
Donkey xx


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## Choice4 (Aug 14, 2008)

Ally1973
I am happy you have got your results back
From your results
NK cells assay 50:1 yours is 32.7 it should be under 15% so you would need ivig or intalipds, but from below, it looks like intralipids works better for you,,but that does not mean , ivig may not also be used.

Your TNF alpha is 25, which s fine, as it should be under 30

Did you do MTHFR, and LAD and DQ alpha test

So basically , from above you may need intralipids, steriod, ?asprin, ?clexaine

If LAD is negative or low you may need LIT



Sleepy
Yes I remember you, congrats in getting to 15wks, as per the steriods I don't thin your Gp idea is bad, you need to wean steriods off slowly. so follow he protocol, some people take the 5mg on alternate days, until they wean off completely
So follow your gps protocol!!

LHR
From your results
NK cell is 20% should be under 15% so not too bad, if no respons to intralipids then IVIG should do the trick,
LAD is very low, the B cell IgG should be above 30% yours is 7.6, the higher the number the better so you need LIT, 
It looks like you and DH share one DQ number, so you may be better using Donor in greece for a more maximum effect
Tnf is 34 should be under 30, one dose of humaria may brng it down, but in some cases it takes it up, so if you don't want to do humaria steriod and ivig may help
For MTHFR hetero not too bad some people take high dose folic acid 5mg, B6/B12, asprin and clexaine

In sumarry you need Ivig, LIT,steriods,clexaine, asprin, ? humaria (check all with Dr G)
Answering your other quetsions
1. LIT in grece is 600euro if you use donor, but neeed to add flight details
2.You need to go twice to greece, in 4wks interval, if your levels are up , then you on't need anymore, if not may need more LIT
3, IVIG Dr G would give you before transfer and if you get pregnant more ivig, at first heart beat more ivig, then he would retest and decide.
4. prednisole, clexaine, gestone,progynova, and a few other meds can be gotten on NHS, but it all depends on your Gp and if he would prescribe it, get a private prescription from Dr G, and take it to your Gp and see what you can get.
5. i don't know about total cost, as it goes up , when you go along, it is up to you to shop around for the meds and also to decide what immune treatment you want to have or not!!
6, the next LIT in greece is 8th sept.
7, Donor LIT is easier if you are going to greece, as you don't need to arange any blood test
If using DH, you need to pay for all his blood test and flight to greece.
But with donor you just turn up, pay 600euros and thats it

You can use Dh's blood in london with Dr Armstrong, no flights involved,!! but you still have to pay for the blood tests and the LIT
Have you got Dr Beers book "Is your body baby friendly", most things are explained there

Donkey
Is the zoladex for Endo!!, 
Dr Gorgy is back on the 5th sept for a week,so you can see him that week then he is off again for a week.
It is up to you if you want to look into immune causes, a few girls here have also done immune treatment independent of their NHS cylcle

Good luck all!!


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## Sprinkles (Nov 6, 2008)

Hey girlies, quick one whilst I've nabbed DHs laptop....

sarahh ~ thanks for info on sending bloods down, must be half asleep took me ages to figure out what TDL was... duh!  Will send it to them.  

Well got my confirmation am off to greece next tuesday, am still in a bit of shock its all happened so fast.  Spent most of today trying to book the most convenient and cheapest flights.  Am having to go down to London Monday night then out on Tuesday, have chosen to stay in Athens Tuesday night just in case and come back Wednesday morning.  So thats that done.

Hope everyone is well, best give laptop back.


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## Choice4 (Aug 14, 2008)

Sprinkle
Thats wonderful, you got a place booked for greece, enjoy yourself and eat loots of greek salad!!
Maybe you can help other girls get an appointment with Dr T while you are over there, as sometimes it is difficult to get hold of Dr T, when you need him!!


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## Sprinkles (Nov 6, 2008)

Yep no worries just give me a shout and I'll try and help best I can.  I know bankie is going same time as myself, and Cozy is booked in for 22nd but anyone else just let me know and I'll try my best.

And apologies forgot to say hi to newbies, if its any help I'm doing my immunes with Dr G but cycling with nhs hospital.  It can be a bit time consuming liaising between the two but its definately manageable and this website definately helps.


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## LHR72 (Jan 6, 2008)

Thanks very much Choice for taking the time to respond to all my questions!!  if you're reading the LIT Needed thread, you'll see i'm having second thoughts on all this at the moment. Having all the info i can get helps me & DH to reach a decision. 

Sprinkles, are you at St Mary's? I am too. Which consultant are you with? i was with Dr Gelbaya but he has left now, so am inbetween. i need to go and see someone soon to talk all this through. Any tips?? good luck for Tuesday!  

LHR


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## allegra (Apr 3, 2007)

Hello Ladies,

I wonder if anybody can help me with a LIT dilemma that I also posted over the on the LIT thread (thanks again, Omni!).  I've been told I have a negative LAD but from reading the LIT thread it seems that my numbers aren't so bad:

B-cells IgG 88.6
T-cells IgG 13.9

I share an 0201 DQ alpha with DH.  Is this number one of the baddies, does anybody know?  I'm wondering whether I need LIT, or if I can scrape by on these numbers.  (DH and I also had a DD and a DS before all these immune problems crawled out of the woodwork, so our DQ match clearly wasn't a problem then, but that was seven years ago.)  Another problem is that I have already taken two humira injections for TNF-a and LIT may not be that effective anyhow.  I'm wondering would IVIG cover those low T-cells?  I've always blithely ignored this LAD thing in the hopes that it might go away  , plus there seemed to be so many other immune probs to deal with and now I'm worried that I've left it too late ...

Any advice would be much appreciated.  

Thank you!

Allegra


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## julieSA (Oct 22, 2007)

Hi All,
Sorry to crash your thread - but i wonder if any of you could explain to me a few basics on immune issues.  I have just had my 5th fresh ivf bfn and we have decided to change clinics.  I went, last week to a consultation with Mr Ranieri at CRGH (UCH London Acu) and he suggested that before we consider a further treatment, I should have my tubes removed due to hydrosalpinx (which I agree with entirely) plus also some tests to include karyotype (both me and DH), Thrombophilia screening, ANA, Antithyroud AB and TNF tests for me and also sperm DNA fragmentation test for DH.  I am totally confused as to what these tests are and also, I have read a much more extensive list of immune tests on FF and wondered why these have not been suggested to me.  I dont want to have a few tests done, then to find out that I need a whole load more before proceeding to my next IVF.  Wondered if any of you ladies can give me a bit of insight.

Thanks,
x


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## omni (Dec 4, 2006)

Hi Allegra,

0201 is not a baddy. It is 0501 (also known as 4.1) which causes particular problems. I would have thought IVIg would cover the T cells but check with the Dr who arranged the LAD test. 

Welcome Julie. Might I suggest you get a copy of Dr Alan Beer's book "Is your body baby-friendly" (it is available from Amazon). This outlines all the main tests and treatments known as "level 2 tests" or "Chicago tests" or "immune tests" - tests for NK cells, cytokines etc. which you may of heard of before (Dr Beer pioneered all these immune tests and treatments when he was practising in Chicago, US - he was a trained immunologist). I found the book really helpful even though I had already heard of and done most of the tests and treatments.

Omni


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## Krispichick (Nov 27, 2008)

Hi Ladies,

just popped back to see if Choice had done a test yest and YIPPEE!! What a great result you clever girl.
Now take it easy, keep taking the tablets (and drips!)   and look forward to a healthy happy pregnancy!

Lots of love to all and good luck with your journeys.

Bonjour Nix  

Krisp
xx


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## Toffee Girl (Mar 20, 2009)

Sarahh

Thinking of you today and hoping you are OK xxxxx 



Toffee Gx


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## karen (Mar 23, 2002)

Toffegirl aren't you testing soon?

Just to let you know I got a bfn which I expected with the bad fertilisation I got this time. The journey is now over for me but good luck to everyone else!

X


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## sarahh (May 20, 2006)

Hi all, just to let you know that I had a bhcg test done today and the level is 16!  Obviously v low for 14 dpo.  Dr G said has seen a couple of pg's progress from this level but not many.  Back on Friday for another bhcg.  Keep   for me!  

Will keep you all updated.  

Sarah x


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## ells (Mar 19, 2008)

Evening ladies,

Sarah saying lots of   for you.  I hope the levels quadruple a few times over for your next test.  Dont give up hun.

Karen   sorry to read your news.

Hello to everyone else, I hope you are all okay.

Cath, please can you bring back some Floridian sunshine with you.  

Well my 'procedure' has shown things to be inconclusive   , so the doc wants me to have another operation   .  I am hoping that the blood tests I had to have redone will show something up so I dont have to have this op.  On my level 1's my protein c and s levels came back as high, can anyone shed any light on what this may mean?

Hope everyone is able to enjoy their evening.

Ells


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## Choice4 (Aug 14, 2008)

Hi Girls

Karen
I am so sorry to hear of your BFN, please take time to heal dear ((((hugs)))),

Sarah
HCG of 16, is not bad, the only thing is that it needs to double within 2days, I think you should give yourself some extra progesterone support, eg gestone. I pray that the numbers double for you!!.
A few girls have posted on Dr Shers site with low Beta, you can post there and see what he says
http://forums.haveababy.com/index.php?showtopic=40418

Algera,
Your LAD level is quite high, so you don't need LIT

Kirspichick, thanks for checking on me and wishing me well

Ellis
What was the exact surgery that you had, and what did they see, that made it inconclusive, If you can help it avoid too many surgeries so as to avoid the risk of scar tissue in your womb.
I don't think the protein C and S, is anything to worry about , because the other immune treatment you would have like clexaine, steriod,asprin, may help reduce the levels.

Julie SA
welcome on board, sorry to hear of your story
1.Like Omni said start be reading the Beer book, it may be difficult to understand initally, but would make sense with time.
2. It is good to know that UCH is now doing some immune tests, I hope many more clinics would do soon!!
The only thing is that UCH is not testing for NK cells, MTHFR, and LAD. It seems like it is only TNF alpha that they are testing on level2. I would like to know what they use to treat high TNf is it humaria or steriods!!

It is up to you if you would like to do the full immune tests and treatment.
If you which to do other level 2 tests, you can use Dr gorgy for the tests and any other immune treatment you need, but still remain at UCH for the IVF.
If you have the full level 2 test,and if Nk is high you may need IVIG or intralipids, if TNf is high you need humaria
and if LAD is low or negative you would need LIT. and steriods, clexaine and asprin(added to the mix)

But the decision would be for you to make , based on what you have gone through, and the evidence you would read from the Beer's book

Goodluck

/links


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## Donkey (Nov 24, 2007)

Evening 

Sarah   that your levels increase.

Karen I'm very sorry to hear of your bfn  

Choice, yes the zoladex is for endo... I can't really have surgery as I had major abdominal surgery 10 years ago which has left a lot of adhesions.  The fact that I had my ruptured appendix / peritonitis op 6 weeks ago was a major risk, but it was, at the risk of sounding dramatic, life saving surgery.  The surgeon said I would die if I didn't.  Luckily it went well but the risk is very high and now I have added to the number of adhesions!!  Will zoladex affect the immunes drugs do you think?

I hope you are all well

Love donkey xx


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## Choice4 (Aug 14, 2008)

Donkey
I have also had zoladex, just before my mymectomy, to help shrink things.
I think it is quite good for endo,
I don't think it would affect immune treatment, i think it helps make things better inside, so that bit of things would be dealt with,
but it is best to discuss with your Dr!!

I saw this for those who may want to read it
Guide to gluten free diet

http://www.healthnowmedical.com/info/gluten_foods.html

/links


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## Toffee Girl (Mar 20, 2009)

Hiya

Sarah - so pleased to hear you have had a positive !!  .  It's a great step in the right direction - just keep with the PMA and keep taking the pills!!!!

Karen - really sorry to hear your news.  I had a vague taste of the 'end of the road' last year when I tried to give up and I have only a vague inkling of how it must feel to make that decision.  I hope you are ok.    In answer to your question, I am testing tomorrow.

Love to all the rest  

Toffee Girl


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## Han72 (Feb 15, 2007)

Hi all

Sarahh - Congrats on your BFP and   that those levels continue to double nicely for you! Do ask your doc if you can get some more progesterone support but please don't be upset if s/he refuses. Not all doctors subscribe to the theory that it helps tbh, I wish they'd flipping well make up their minds and work together on these theories! 

Toffee - good luck for tomorrow hon!      

Choice - hope alls progressing well with you! However I would ask that you to avoid telling people they NEED humira cos of high TNF alpha. The ARGC is known for treating those with raised TNFa who don't want Humira with steroids and IVIG and those people have gone on to get pregnant.... Not having a dig, this is just a request and I hope it doesn't offend! Cheers for the link on the gluten free diet!

Karen - so sorry to hear of your BFN honey   

Hi Ells - sorry your last op didn't give you the answers you needed hon, you really have been in the wars haven't you     It's great that your doc really wants to get to the bottom of it all but do you really NEED to have another op? Any chance of a second opinion Good luck honey, whatever happens!   

Wotcha Donks, Ally and Krisp  

Omni - what's this about 0501 causing problems? I'm 0104/0105, *05*05 but can't find a flipping thing in the Beer book about whether that's good, bad or indifferent. Still haven't got round to posting on the SIRM site but honestly trying to figure this stuff out is like wading through treacle wearing lead boots!

Love to all, sorry no more persos. Am starting to get a bit peeved with the clinic. I went in to pick up my results the other day but have only just realised the intralipids assay results are missing    I called the poor hapless PA who says Gorgy's absent and can I call back in an hour... She did the same thing when I rang the other day too and it's not like it's a local call for me! Sorry but I'm used to the clinic at least _offering _to call me back (even if they don't always manage to do so in the advised time frame) And how hard is it to give someone their results, it's not like I have a huge file with them, I've only had one appy and those tests done!    she's got those results cos if it's missing I won't be very happy given the hassle and expense of getting over there to have them done!

xxx


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## ells (Mar 19, 2008)

Hi Ladies,

Sarahh how are you doing hun?  What time is your blood test tommorrow?  Sending you quadrupling vibes for your numbers hun    .

Choice, how are you feeling?  When will you be having your scan?  The doctor is suggesting I have another bowel resection   , I really dont want to have it done- I had loads of problems with infections after the last one I had.  I am hoping that I can get away with it and rely on blood tests and possibly a capsule camera test to avoid having to go in for an op   .  I didnt have it in my plan of attack for getting my body sorted out and ready for getting pg   .

Toffeegirl how are you feeling?  Sending you loads of    for tomorrow.  Are you having a blood test or are you using HPT?  Good luck hun.

Karen   .

Omni, how are you feeling?  Are you growing a nice bump?

Hope are ladies who are on holiday are enjoying their breaks  

Hope everyone else is okay.

Well I feel a bit more human today   still running to the loo but at least I feel as if the tablets are starting to work on the pain side of things.  I am not going to start the other tablets that the doctor told me to take until after we have had the appointment on Tuesday as I dont want the results to be skewed by them - I want them to show whatever the problems are if you know what I mean.  I will tell Dr G about them so that he is aware of what I will be on.  I think the plan is that I will be put on immuno suppressants for long term treatment.  Still we are a long way off from that yet.  Looking forward to getting some answers from Dr G .  We are there at 10am on Tuesday.

Have a nice rest of the day everyone, we have okayish weather down here - its sunny but showery.


EllS


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## sarahh (May 20, 2006)

Hi Ells, thanks for your quadrupling vibes - I really hope they work!! However, did an HPT this am to see what was happening and had a very faint line still so no idea if gone up.  Of course the only way to tell is to do the blood test but I'm kind of dreading the result!  I know it could go either way really.  Is it going to be up or down!  Driving me crazy.  Will go to Southampton hospital for 8am so they can get result back to me asap.  They took less than 3 hours on Wednesday.  Was really impressed and pay less than having it done in london.  Got a great contact if you need a private blood test done locally. 

Toffee Girl just wanted to say   that tomorrow brings you some good news.  Hope you have a lovely high hcg level!  And not this horrible low level. 

Dr G phoned at 8pm last night.  He just said that not had many positive stories with levels this low but knows of one or two........     

I was so geered up for a BFN yesterday and now this has caused me turmoil!  I think there will be lots of   tomorrow if level gone down as it was almost there but not quite.  Whereas felt totally calm yesterday when I was convinced it was BFN - my mind is going mad    Just ignore me girls!!

Sarah x


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## Maarias (May 4, 2005)

Sarah, will keep you in my thoughts and prayers!   

I think there is a thread somewhere about low betas turning into babies...mine started relatively low this time as well...

Mx


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## ells (Mar 19, 2008)

Sarah - keep positive hun.  I will be thinking of you.   
Ells


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## jayneej (Mar 15, 2008)

Well we bit the bullet and saw Dr Gorgy last month for immune testing.  We are back there on Wednesday next week to discuss the results but in the meantime I have had them faxed through to me today and was hoping someone could help me interpret them.  

NK Assay (% killed) Panel

50:1                                        27.7
25:1                                        18.0
12.5:1                                      13.6
IgG conc 12.5 50:1                    28.3
IgG conc 12.5 25:1                    24.1
IgG conc 6.25 50:1                    19.9
IgG conc 6.25 25:1                    18.4
%CD3                                      90.4
%CD19                                    6.8
%CD56                                    2.1
%CD19+cells, CD5+            11.8

NK assay w/intralipid

50:1 w/intralipid 1.5mg/ml  12.4
25:1 w/intralipid 1.5mg/ml  9.9

LAD

Flowcytometry      Negative
T-cells IgM+      3.4
T-cells IgG+      7.5
B-cells IgM+      13.5
B-cells IgG+      30.3

DQ Alpha Genotype

Me  0102, 0401
DH  0103, 0505

Many thanks

Jayne


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## omni (Dec 4, 2006)

Hi Nix,

The Intralipid test is on a separate sheet - so hopefully it has just been done/sent at a later time.
Interesting about 0505. If you look at p. 302 of Dr Beer's book it is included under the 4.1 phenotype
- so it may be a "baddy". Do you share it with your DH? The book makes clear that 0501 is treated as a cancer by the mother's immune system (p.45). I have read more about this I think in the files on the yahoo immunology site.

Both you and your DH have two numbers and your embryos will get one from each - so even if you and your DH both have one copy of 0505, your embryo may get the other two numbers. If you put back more than one some may have 2 copies, some 1 copy, some none. I think this is interesting to know. But also (even without any of the baddies) if you have similar numbers, your body may not recognise the embryo as a baby but as altered "self" cells (i.e., some sort of cancer) unless your blocking antibodies LAD have been built up (by previous sucessful pregnancy or e.g., LIT teatment). 

Hi Ells. Thanks for asking. Unfortunately no bump yet - I had no morning sickness (well that was fortunate!) but I can't wait to I can see/feel something because without having had scans, I'd never beleive it. 

Sprinkles  - glad you managed to finalise your appointment and that you have Bankie as a LIT buddy. 

Donkey, hopefully once you get your BFP they will prescribe clexane and progesterone - my GP did and the NHS obstatrician said if they had not she would have done so as it is necessary to maintain the pregnancy and is no longer fertility treatment. 

So sorry Karen  

Sarah, I PM'd you but also wanted to wish you all the best for tomorrow here   I know the waiting is terrible!

Omni


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## Cath34 (Oct 14, 2008)

Karen - I'm so sorry to hear your news   take time to heal hun.   to you.

Sarah - a faint line is better than no line- good on you girl. I   for higher numbers tomorrow, take it easy today and try and stay calm!!!!!!!!!! i know I'm a bright one talking  

Toffee - Best of luck for tomorrow  
xx


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## omni (Dec 4, 2006)

Welcome Jayne,

Your NK cell activation is high (50:1 - should be under 15). IVIg does not appear to work well for you in bringing down NK cells (£1250 per infusion  ). BUT fortunately intralipids appear to work well for you (£350 an infusion).   (I am the opposite and have to fork out for IVIg)

Your LAD is borderline B-cells IgG+   should be over 30% but ideally over 50%. Given that you also  share a DQ Aplha number with your DH, LIT may be advisable to bring your blocking antibodies level (LAD) up. 

Have you been tested for cytokines (TNFa) or MTHFR etc (blood clotting issues)?

Hi Shelley, I think it only takes about 48 hours after you take the last tablet but see what others say. 

Omni xx


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## ells (Mar 19, 2008)

Shelley,

I was told by my GP to leave it 6 weeks for the steriods to be out of your system but I was on the highest dose for a while I think in total I was on them for 2 months.  It may depend on how long you have been on them and what dose you were taking.

Cath are you back?

Ells


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## jayneej (Mar 15, 2008)

Thanks Omni, that was what I was thinking about the NK's but wasnt sure about the others.  I'm glad we did find a problem although DH is not to pleased as it means more money, but on the plus side it is the cheaper of the two treatments that I respond too!  He took a little bit of convincing to go down this route, he wanted to wait until after we had had our NHS funded cycle before getting tested, boy am I glad I wore him down .

We did have the cytokines and MTHFR but when I asked for the results to be faxed to me today these were all that came through.  I dont like to make too much of a pain of myself so I guess we'll get these on Wednesday when we see Dr G.


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## omni (Dec 4, 2006)

Jayne LOL,

I think it is because it is us that do all the research that we need to drag our poor DHs behind us. 

I really hope the test/treatment makes the difference for you. 

Incidentally, I should have clarified that 0102 and 0103 (although slightly different numbers) are regarded as a match. This seems to be the case for all the DQ Alpha numbers beginning 01.

Omni xx


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## Cath34 (Oct 14, 2008)

Ellis, Hi - No I'm still here in the sunshine state!!  90deg at present   Sitting by the pool and hot tub, thinking about where to go for a bite to eat!!!! We leave tomorrow   and so we need to get some last minute shopping in  .
Love to all, sorry I'm very behind with ff and cant keep up with so many newbies.   I'll be better once I'm home. 

xx


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## omni (Dec 4, 2006)

Shelley,

Ells may well be right, I was only basing what I said on someone saying you should stop steroids at least 48 hours before LIT treatment. It may take much longer to get totally out of your system.

Omni


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## Sprinkles (Nov 6, 2008)

Karen ~ so sorry for your bfn, take care of yourself x  

Sarahh ~ everything crossed for you and praying levels increase, good luck for tomorrow x

Ells ~ oh my, sending you lots of hugs to get you through this time x  

Choice ~ hope you are keeping well, thanks for the list makes interesting reading

Donkey ~ sounds like you’ve been right through the mill  

Toffee Girl ~ good luck for tomorrow  

Nixf01 ~ sorry about your frustrations with the clinic

Hi newbies and welcome

Hi omni and cath, safe trip home

Hi to everyone else, nothing much to report just sorting myself out for next week, and due to take my second humira tomorrow evening.  Do you think it will be ok having this on Friday and LIT the following Tuesday?  Nothing I can do about it really though


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## sarahh (May 20, 2006)

Hi girls, thanks for all yr messages of support.  Am really struggling tonight, just want to be put out of my misery.  HPT was still really really faint today so I'm really not thinking that its gonna be good news for tomorrow.  

Oh well, let you know tomorrow.  

Sarah x


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## ells (Mar 19, 2008)

Sarah         

Ells


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## allegra (Apr 3, 2007)

Omni and Choice, just to say thanks for your replies about my LAD.

That is interesting what you say about all numbers that begin with 01, Omni.  DH and I both have numbers that begin with 01, as well as a 0201 match.  I always knew I should have stayed away from him ...

Good to luck to all.  

Allegra.


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## Choice4 (Aug 14, 2008)

Nixfo1

"Choice - hope alls progressing well with you!  However I would ask that you to avoid telling people they NEED humira cos of high TNF alpha. The ARGC is known for treating those with raised TNFa who don't want Humira with steroids and IVIG and those people have gone on to get pregnant....  Not having a dig, this is just a request and I hope it doesn't offend!  "

I was really suprised to read your above post to me, about Humaria and TNF, As you know Dr Beer uses Humaria for high TNF and 
Dr Gorgy as well. So I am only just repeating what Dr Gorgy or Dr Beer suggest to their patients.
It is up to the patient and the Dr to to decide what treatment they would like to do.

As you know this is not the ARGC thread and I was only answering , according to the question asked on Dr Gorgy's thread and what he would  do.
If there is anyone here who have high TNf and Dr Gorgy has only recommeded steriods please let me know,


You may not be aware but I am in the MEDICAL profession, and may be thats why I have a bit more knowledge about this whole stuff.
But to avoid further problems or harrassement i would stop posting here,!!!

Thanks all

AND GOODLUCK!!


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## Cozy (Jul 17, 2008)

hello ladies, 

I know there is alot of controversy and mixed views on the use of Humira for raised TNF alpha, but this is what the Rheumatoid Arthritis society have to say about it....it may help clarify the use a little...

I am due to use it, but for raised uNK cells not TNF alpha. I havent read any info on that yet, other than in Dr Beers book. If any has any experience of using it for this or knows of any websites please let me know. Thanks


Adalimumab (Humira) is a human monoclonal antibody that binds to tumour necrosis factor alpha (TNF). TNF is a protein called a cytokine, produced mainly by white cells (leukocytes). In RA, TNF is produced by cells inside the joint and plays an important role in stimulating joint inflammation. When adalimumab binds to TNF, it neutralises the function of TNF and reduces joint inflammation and damage. Adalimumab is one of the licensed TNF-blocker or anti-TNF drugs (the others are infliximab and etanercept). 

A monoclonal antibody is a protein and, therefore, cannot be taken by mouth as it would be digested. Adalimumab is given by an injection just under the skin, usually once every two weeks, using a special pre-filled syringe. 

Q What is tumour necrosis factor alpha (TNF- )? 

A: TNF- is a protein in your immune system that is believed to be one of the main causes of inflammation in Rheumatoid Arthritis. Normally, it plays an important role in helping your body fight infections. People with Rheumatoid Arthritis have too much TNF- in their bodies. This extra TNF- inflames the normal body tissues, especially the joints. 

Adalimumab had an extensive development programme. By the 31st August 2002, 2,468 people with RA had received the drug in many different countries, with many patients having it for more than one year (total experience 4,870 patient-years). Four randomised double-blind placebo controlled clinical studies which studied at least six months of treatment were used for the application to the authorities. 

In the DE011 study, adalimumab was used alone (monotherapy), in the ARMADA and DE 019 studies, it was used along with Methotrexate. In the STAR study, it was used with several anti-RA drugs including methotrexate, sulphasalazine, hydroxychloroquine, leflunomide, gold and prednisolone, with sometimes more than one of these drugs being used with adalimumab. 


Q What is HUMIRA? 

A: HUMIRA is a medicine that is used in people with moderate to severe Rheumatoid Arthritis. People with Rheumatoid Arthritis are usually given other medicines for their disease before they are given HUMIRA. HUMIRA is for people with Rheumatoid Arthritis who have not responded well enough to these other medicines. 

Q How does HUMIRA work? 

A: HUMIRA is a medicine called a TNF blocker, that is a type of protein that blocks the action of a substance your body makes called TNF- . TNF- is made by your body's immune system. People with Rheumatoid Arthritis have too much of it in their bodies. The extra TNF- in your body can attack normal healthy body tissues and cause inflammation especially in the tissues in your bones, cartilage, and joints. HUMIRA helps reduce the signs and symptoms of Rheumatoid Arthritis (such as pain and swollen joints) and may help prevent further damage to your bones and joints. 

Q Is it currently available? 

A HUMIRA received its European licence in September 2003 

Possibly the most serious side-effects to be considered with TNF-blocking treatment is that of infections. TNF plays an important helpful role in the body to fight infections. Studies of adalimumab have shown, as with other TNF-blocking drugs, a slight increase in serious infections such as pneumonia, pyelonephritis or joint infections. In particular, TNF-blocking drugs are associated with re-activation of previously undetected infections with tuberculosis (TB, previously known as consumption). Therefore, before taking adalimumab, or any TNF blocker, you will be asked about any previous infections, or contact with people with TB, including other family members and a chest x-ray will be performed. Sometimes a skin test will also be performed to assess if any dormant (latent) TB may be present. If there are signs of previous TB which has not been thoroughly treated, you will be asked to take anti-TB treatment before starting adalimumab (or any other TNF-blocking treatment). 

TNF-blockers have all been reported to exacerbate multiple sclerosis and you will be asked if you have ever experienced symptoms such as transient loss of vision that could indicate a previous attack of multiple sclerosis. 

There seems to be no increased risk of most cancers. However, although it is unclear if cancer has been previously treated and cured, how long the interval between cancer treatment and starting anti-TNF treatment should be. A cancer of lymph glands called lymphoma is known to be increased in patients with persistent active RA (as well as psoriasis and Crohn’s disease). The clinical trials of adalimumab have recorded 10 cases of lymphoma. This is higher than would be expected in the normal population, but is in keeping with the rate observed in patients with active RA. However, data from larger groups of patients will be necessary to clarify this question about rare but serious potential side effects. 

Blocking TNF with drugs in RA is associated with a slight increase in the levels of auto-antibodies in the blood. These auto-antibodies are usually found in a condition called lupus. One patient out of 2334 RA patients treated with adalimumab developed new onset lupus. The patient improved following discontinuation of therapy. 

Blocking TNF may worsen moderate to severe congestive heart failure. Therefore, adalimumab (and other anti-TNF therapies) is also not recommended for RA patients with moderate to severe heart failure.

WHAT WILL HAPPEN BEFORE TAKING TNF BLOCKER DRUGS? 

Before you take TNF-blocker drugs your Rheumatologist will recommend that you should receive one of these medications or whether other treatment would be best for you. Your arthritis activity will be measured on two occasions to check that you qualify for this treatment. You will then be screened to exclude an increased risk of side effects, in particular for a past history of TB, multiple sclerosis, recurrent infection, leg ulcers and a past history of cancer. You will be asked to have a chest x-ray if a recent one is not available to exclude signs of previous TB (which may sometimes be unknown to anyone, including the patient), and to exclude signs of heart failure. 

Blood tests to check blood count, liver function tests and in some cases to exclude hepatitis B and C will be taken. 

Adalimumab is given using a special pre-filled syringe. You will have the drug delivered to your home. You, or a helper, will be taught how to give the injection. Most people continue take other anti-RA medication with adalimumab. 

Adalimumab needs to be kept in the refrigerator but can be taken out for 20 minutes before injecting to reduce the stinging that can sometimes occur with the injection. 

If you feel unwell, or have a cold or cough with phlegm it is best to postpone your next dose and discuss what to do with your rheumatologist or nurse specialist. Although there is no hard evidence to support this practice, most rheumatologists use antibiotics for coughs with sputum or tonsillitis if patients are taking TNF blocker drugs.

There is quite alot more info on the web about how Humira is used to treat high TNF alpha, though this is not to say that steroids and IVIg or any other combination of treatment wont work also. I feel it comes down to clinic preference and knowledge, aswell as the patient's history as to whether Hunira is used or not.

Cozy


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## ells (Mar 19, 2008)

Choice please dont leave us, your help support and advice has been invaluable   .

Cozy, that was really interesting to read.  I have been looking on the internet for info on Humira and IVIg, more from whether it would help my current problems, its really interesting.  My GP said that he actually prescribes Humira for a patient that has crohns and has to have weekly jabs.  

Sarah, thinking of you hun    .  

Toffee girl, how did you get on?  I really hope its good news hun      .  

Cath, Oooo some shopping!!!  Could you make sure you packet some of the sunshine to bring back with you!!!  Have a safe trip home hun.   

Sprinkles, thank you.  Are you all sorted for Tuesday?  I keep thinking of yummy greek salad and delicious feta   .  Yum.  Hope it all goes well.

Hello to everyone else   .

Well I feel a bit better.  I am still not sleeping properly as I have to keep getting up in the night to go to the loo   but I am hoping that things will settle down over the weekend.  It would be nice to eat something and not have to worry about being close to the loo   .  It could be worse I know, but its jsut so tiring.  

Hope everyone has a nice Friday.

Ells


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## Maarias (May 4, 2005)

Hello ladies,
Just wanted to say
Choice please don't leave. I know a lot of the ladies here appreciate your advice, and know that you are only giving your own opinion.
I'm sure everyone on here is intelligent enough to make their own informed decisions on the facts. Personally i didn't feel comfortable taking humira, but I may well have felt differently if I'd had a few failed cycles and a higher tnf...ultimately, I think everyone has to make up their own minds as to how much they are prepared to do to get that elusive bfp.

Sarah - any news on your betas.    

Mx


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## jayneej (Mar 15, 2008)

Choice, as a newbie to immune issues I for one certainly would appreciate you being around and providing us with all your knowledge.  I have lurked for a while and have found your posts to be extremely helpful.  

Jayne


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## Cath34 (Oct 14, 2008)

Choice - dont leave us, we all know that your knowledge is really invaluable and that you are only suggesting what Dr G would do anyway and everyone is grown up enough to make up their own minds. Just because you had a difference of opinion, shouldn't mean that you are targeted and singled out. We really appreciate the comments you make hun.  

Toffee - how did you get on today hun? 

I'm leaving the sun tonight   Really gutted but at least we have had a lovely time and I am so much more relaxed now


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## superted (Sep 21, 2004)

I think we are all entitled to our own opinions and that is exactly what is it its not set in stone and neither are we telling people to do something.

I just think we shouldn't have to get all worked up about it, rise above it and get on with what we know and do best.  

Have a good weekend girls.

superted x


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## Cozy (Jul 17, 2008)

hello ladies,


Choice, I agree with Cath, its no reason to stop posting. Your knowledge is very much appreciated by so many people -me included.

Cath, glad you enjoyed your holiday. I hope it's helped ease your disappointment and has helped you feel positive about any future treatment. The weather here is not so good at the moment - its chilly wet and windy! It was nice to meet you.

Ells, yes Crohns is one of the things that Humira is used for. Do you think it would help you? I'm not sure about me. I hope you are feeling better and a little less pain

Sarah, I'm   that everything is positive for you today and your levels are rising nicely  

Sprinkles - not long til Tuesday. I hope all goes well.

Hi to everyone else. I hope you have a good weekend.

I'm off on holiday tomorrow for 2 weeks,  90 degree heat   here I come    

Cozy


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## ells (Mar 19, 2008)

Cozy, have a great holiday.  On the humira, i dont know if it will help me or not but it would be interesting to see if it made a difference.  I am feeling a little better thank you hun.  I am hoping things improve further over the weekend.

Sarah and Toffee Girl, hope its good news from you both      .

Hi to everyone else.

Ells


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## sarahh (May 20, 2006)

Hi girls, bad news from me.  Level dropped today so its all over.  

Toffee Girl - hope you've had a better day and more positive news than me.    

Sarah x


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## ells (Mar 19, 2008)

Sarah I am so sorry hun   .  Take care of yourself and DH I know how much this hurts.  

Ells


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## Cozy (Jul 17, 2008)

Sarah,

so sorry, I was really hoping you would get some good news today    

Take care

Cozy


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## omni (Dec 4, 2006)

Really, really sorry Sarah.  

It is even harder than just getting a BFN. Its just so bloody unfair.

Omni


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## omni (Dec 4, 2006)

Choice,

Please don't leave the boards. You have helped so many people with your knowledge - including myself. I agree that it is very unfair the way in which you have been singled out but please try to ignore it if you can. It would be terrible to lose you. This thread certainly would not be the same.

Omni xx


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## sarahh (May 20, 2006)

Hi thanks for all your messages of support.  

Omni - yes it is worse than getting a BFN because I was prepared for that but once I had a level and now its gone, I just feel sad & like life is so unfair.  But i know everyone on here has experienced that same feeling so at least we can share that.....  

I also just wanted to say Choice - don't leave us.  You have given me some invaluable information.  Rise above it hon.  

Sarah x


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## Pinpin (Nov 4, 2008)

Hi everyone

Just a quick one from me to say:

Choice - PLEASE don't leave us. You were the first to help me understand my results and for this i am ever so greatful. You told me exactly what Dr G did and it really helped me for the follow-up appointment as i knew what to expect and i prepared my questions accordingly.

Sarah - I am so sorry for you hun   I was so hoping it would have worked. Don't give up you will get there in the end.

Toffee - how did you get on today I   for a BFP for you  

Hi to everyone else. DH did my second injection of humira last week and I got a retest on wednesday this week. Dr G didn't want to leave it too long in case my levels have not decreased I could choose to have a further 2 injections before EC. I am anxiously awaiting for results next week but under no illusions that with my high levels of 50 they will probably not have come under 30 with only 2 injections  

To all who have been successful would you mind telling me what your TNFa levels were? I just need some reassurance from someone who has had some success with a similar level to mine. For some reason out of all my results this one bothers me the most as it just seems so high  

Good luck to all lovelies. I do not post very often but I do keep up with everyone's news and wishes everyone the very best of luck in their treatment   it is a tough and unfair journey isn't it.

Love to all

Pinpin x


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## dakota (Feb 6, 2007)

New home this way............http://www.fertilityfriends.co.uk/forum/index.php?topic=207281.0


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## Suzie (Jan 22, 2004)

No one has been singled out. 

When we have a complaint made against a member/members then we have a duty to investigate it
As I have posted previously some posts were posted which were unacceptable. We can not allow posts which are a personal attack on another member regardless if we have a different opinions to them. 

I thought I had made myself clear and that the matter had been put to bed but clearly not

Please can you move on from it 

Suzie


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