# Fertility & Gynaecology Academy (Amin Gorgy) : Part 3



## dakota (Feb 6, 2007)

New home ladies, love and luck to you all


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## Cath34 (Oct 14, 2008)

Hi Superted, good to have you back. I'm glad you have enjoyed your time away. I'm going to see Dr G at 11.30am on Weds I think its for a baseline scan. I'm not sure when I'll start stimms. Can I ask where did you get your stimms drugs from? Does Dr G give them to you? Well not give exactly  but you know what I mean?!!! lol
So what was the outcome then with the £90 charge? Do we have a better idea now, I must have missed that bit? Choice did say she would mention it but i dont know what happened?
Good to hear all is going well with you? 

I'm getting worried now that the IVIG wont be enough to lower my NK's as they are v high. 50:1 is 34 and with 2x ivig it only drops to 16.5. I think Ive read that correctly. It is a big worry for me but I decided to hve Intralipids too just to see and I'm going to ask for the test on weds also. Time is getting very close now and I'm bricking it!!


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## twinkle123 (Mar 1, 2008)

Hi everyone

I have my first appointment with Dr Gorgy on the 27th July.  Was just wondering how he likes paid.  Can I just confirm with someone that I can pay at the time of the appointment and that he will take a cheque?

Really looking forward to my appointment and hoping that he will work miracles so that my 5th IVF finally works!  
Susan
x


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## Choice4 (Aug 14, 2008)

Hi all
Welcome to the new home part 3!!!
It is getting busy here!!


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## Choice4 (Aug 14, 2008)

Susan p
I am not sure Dr g takes cheque, but debit or cerdit card is ok
But call and confirm with his receptionist!!!
Goodluck


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## Cozy (Jul 17, 2008)

HI Everyone,

I have my 1st visit with Dr G tomorrow... more money !! Never mind, it will hopefully be money well spent. How long does it usually take to get results back?

What is his address? I read somewhere its Harley St, then somewhere else its Wimpole St. It will save me phoning.

Thanks

Cozy


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## Cath34 (Oct 14, 2008)

Hi Cozy, its 57A Wimpole Street. Good luck. If you are having the NK Assay and any others that need to go to USA, its about 10-14 days to get the results back. I think Regents Park tube is quite close if you're taking the tube. x


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## siheilwli (Jan 18, 2006)

Hi everyone, 

Waiting patiently for my results now. Can't wait to see what comes up. Definitely glad we took the immune route. 

Anyone else think the Beers book is a bit useless UNTIL you know what's wrong?

Quick question - I would rather do intralipids than ivig, but wondered if there are times when Gorgy prefers the ivig route?

Cat


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## Toffee Girl (Mar 20, 2009)

Hey Cath34

Disaster - looks like I won't be cycling with you this month after all - my lovely AF looks like it is starting way early than usual - and, don't laugh everybody - but I am stuck in the Seychelles on holiday and don't fly back till thursday! It's a horrible life i know! That would put me on Day 5 by the time I get into London to see Mr G on Friday (we were expecting Friday to be Day 2 or 3) - too late to start scanning and stimms.  Bummer. 

Toffee Girl


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## Toffee Girl (Mar 20, 2009)

Hi Cat

The Beer book is great if, like me, you had a range of strange symptoms that you suddenly can find an explanation for i.e. I was told 6 years ago that I had early menopause.  But having read the Beer book, my collection of weird and wonderful symptoms etc are totally explained when you get to the white blood cell immune categories - it was a revelation to me to read it (and I guessed what half of my results would be before I got them back!).  Easier perhaps because I had already been tested for the blood clotting related elements a few years ago.  I know its hard to be patient when all you want is your results back!!

Mr G tends to tailor his use of intrallipids and IVIg according to patient need/cost/results etc.  We decided to ttc naturally for a couple of months whilst doing LIT in Greece, so i have done one intrallipid course, and then a couple of weeks ago we did IVIg instead - mainly on the back of a discussion about swine flu in my local area (IVIg suppresses your NK cells but gives your body other support as it contains antibodies from hundreds of different sources being an actual blood product whereas intrallipids suppresses your NK cells but has nothing else beneficial in it as it is a soya product).  I am sure he will listen to your concerns and tailor things accordingly.

Good luck!

Toffee Girl x


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## BubbleMac (Apr 15, 2009)

Apologies for the switch of topic ... I did my full ICSI cycle with Dr G and he provided the fertility meds with all the paraphenalia.  The sharps box is full and, at the Lister, I just used to give it to them to have destroyed safely.  However, I tried to hand it in at Dr G's clinic and his sec, Clarissa, tells me that he absolutely will not take them and she got into trouble with him for accepting one in the past. The Doctor's Lab next door won't accept it.  I don't have an NHS GP at the moment so am at a loss as to what to do with it.  I'm very surprised that Dr G will give the stuff out but not take it back - so was the Doc's Lab.  Suggestions would be most welcome.

Thanks,

BM x


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## superted (Sep 21, 2004)

Hi Girls

Cath sorry not sure about drugs as I am only seeing Dr G for immunes with him.

Am surprised about the sharps bin cos I took one from him a few weeks back for all my gestone and clexane and am surprised he wont.  Mine is almost full. mmmmmmm maybe my local hospital will.  

Girls do any of you know you have been regularly having ivig/intralipds what the timescale is between having it.  Not sure if it last 2 weeks, 3 or 4? Can anyone help please.  Just trying to budget really for next one.

superted x


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## Cozy (Jul 17, 2008)

Cath,

thanks for the address. 

I had NK assays done previously at ARGC and I had to wait weeks for the results, glad its not that long with Dr G.

Cozy


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## Toffee Girl (Mar 20, 2009)

Hi Superted and Ladies

I understand IVIg lasts for 3 weeks and intrallipids is about the same or I have a feeling 4 weeks at most.  There are other ladies on this thread who have BFPs and are scheduling to do IVIg every 3 weeks (at huge cost!), and I did ask Mr G when I did my first infusion a couple of weeks ago and he said 3 weeks.

No idea about the sharps bins either - mine is overflowing!!

RE Low LAD Levels - re earlier posts about my terribly low LAD levels that went even lower following two LITs, I just checked my email and found a reply from Dr Tsagaris to say that levels don't go lower unless there is an external reason.  The quote below is his response to my question about whether another lady and I who switched places in the queue due to flight times, might have mistakenly been given the wrong LIT doses - 

"I'm more concerned with any other treatment you might be having at this time. IVIg, steroids, and humira may lower your antibodies. This reacton  is not due to "improper" leucocytes.  Usually we do not see a drop unless there is an external cause."

What's interesting is that he sees these other things as having a role in potentially adversely impacting LAD levels - aarggghh - it's all so complicated and confusing.  Just for the record, when the bloods were taken I had had one month of prednisolone at 25mg and one dose of IV intrallipids, but no IVIg.  The mystery continues ......

Lots of love

Toffee Girl x


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## Cath34 (Oct 14, 2008)

Hi Toffee Girl, 

Shame you cant cycle the same time. I am on cycle day 4 now and will be day 6 when I see him but I'm down regulating at the moment until my scan on weds. Do you by pass down reg then and go straight to stimms ie short protocol? I hope I can still carry on, I'm guessing as I'm already suppressed I should be ok to start stimms when he gives the green light?

Seychelles hey, very nice too. I'd give anything to be relaxed somewhere hot!!! Enjoy. xx


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## sarahh (May 20, 2006)

Hi all, sorry been awol again been busy potty training and putting up big girl beds!!!  The joys that hopefully someday everyone on here will experience   !  

Toffee Girl - hey, nice to have you back, we were all wondering what had happened.  So sorry to read all your crappy news tho.  Crappy except for being in Seychelles of course    However, I suspect right now you prob wish you were at home so it makes it easier to sort out.  I'm sorry but I can't answer any of your questions as you are way more knowledgeable about the whole thing than I feel I am!!  The only thing I can say is try to keep a small ounce of you feeling positive.  

I don't really understand Dr T's response to you - I thought all those things were meant to help not hinder??  If they help one thing but destroy another then why oh why are we doing the bloomin LIT??  And what is dear AF doing coming early damn her.  Sending you   

I am so nervous about getting my results!  I'm having the repeat test done next Monday.  I also have the pleasure of having a saline hystography (or something that sounds like that, Dr G keeps saying it so fast I'm not sure I'm hearing it right  ) anyway, bit like a hysteroscopy but not as intrusive from what I understand!  Next Mon will be cycle day 15 and Dr G said he would prefer not to do it then in case pregnant - I just said "I don't think my my husbands' sperm count and all my issues that we have a hope of that" so he said if you realise the risk then that is fine and I'm happy to do it then!!  Another £300.... and £90 follow up ... and whatever the LAD re-test cost (can't remember if its £200 each or £200 total?) 

Re: sharps bin - can't you take it to your nearest hospital - they must have somewhere to dispose needles - maybe take a letter from the IVF clinic showing you've had treatment there with you??  

Choice - when you having your test?  

Cath - Good luck for Weds in case I don't get on here beforehand.   that your baseline scan goes well - will you start stimms straight away??      I'm hoping to be a few weeks behind you in terms of tx - so maybe when you get your BFP i'll be on my 2ww (PMA everyone!!!)

Just on the subject of people saying stupid things when you are going through tx is anyone sick of hearing upon stating that hopefully IVF cycle is imminent "oh you must be so excited"??!!!!!!!!!!!    Eeeerrrrrrr, I feel lots of emotions, but excitement is rarely one of them - should that be excitement at jabbing myself and giving myself a huge bruise for the 3rd time in a day, or excitement at inserting a pessary that only hours later finds its way back out (sorry, gross I know!!!), or maybe its excitement at having a bunch of strangers poking and prodding your private parts .............. do tell me which one should excite me the most Or now, to add to the bargain, maybe I should be excited that I'm lowering my immune system when there are nice things to catch like swine flu    Sorry girls, rant over!!!!!  

Well, feel much better for sharing that,  off to bed.


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## ♥JJ1♥ (Feb 11, 2006)

ARGC now charge £10 to take sharps bin back, but if you take it to a chemist where there is a green and red arrow on the door/window this is the international sign for needle exchange and drug users know that the chemist takes and give our works.

Here's a pic of one but I can's manage to post the pic!

http://images.google.co.uk/imgres?
L x

/links


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## Cath34 (Oct 14, 2008)

Well I dont understand Dr T's response to Toffee either. Its all so conflicting and damn frustrating isnt it?
Sarah, I agree with you. Exciting isn't the first emotion that springs to mind!! I'm going to travel on the train tomorrow for a change but then again if I listened to the news I wouldn't, due to crowded places and swine flu!!

Dr G's secretary kindly messed up my appointment tomorrow. I rang up yesterday to check something and confirmed my appt and she had no record of it!!!!! She kind of admitted that I had made it but couldn't remember why she hadn't transferred it into the diary!!!! She offered me a later appt now instead. I wouldn't have been happy if she hadn't.
I'm hoping to start stimms tomorrow but we'll see. Need to get off this suprecur, I feel rotten!!!

Anyway, I'm having our LAD bloods done tomorrow for the retest. Choice when are you doing yours? Is it today?


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## Toffee Girl (Mar 20, 2009)

Hello Again!

Sarahh - you are absolutely right there is a lot not 'to be excited' about in that list!!!!!  I have to say it has been a challenge to try and keep the bruising below the bikini line whilst on holiday!

THanks so much for all the words of wisdom.  

Cath - am so glad you replied to me with your schedule details as it spurred me to get on the phone to Dr G instead of disappearing into a black hole.  Depending on which day I decide is really Day 1 (according to level of proper flow - yuk) then I might get away with starting a cycle still, but without any down regulation (actually in my 5 other cycles we have never down regged as the consultants thought I had early menopause and put me on short protocol anyway).  can't see how I can find suprecur on an island in the middle of the Indian Ocean ..... Hope your scan goes well tomorrow - good job you checked!  I expect if you had just turned up he would see you anyway.  

Have to go in to see Dr G on Friday morning and see what the situation is then.  Let me know if anyone else is popping in then.

I see there's lots in the newspapers about the old s flu.  What a complete pain.  None of us have time to sit around waiting for it to disappear - and oh joy commuting into London with all those germs to see Dr G!!  Make sure you all buy some of that 'First Defense' hand spray etc from boots  - good to keep in the handbag.

Stay well xxxx

Toffee Girl x


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## Pinpin (Nov 4, 2008)

Firstly thank you very much Choice for your very useful explanation of my immune results.

I was away for a long weekend but have asked dr g pa about my TNF and MTHRF results as you said and she has now faxed these through to me (she mist have forgotten to include them).
Anyway here goes (Choice i hope you can enlighten me again but i think it's mostly bad  news...)
TNF a          50.4
IFN g            9.6
DQ alpha me      0102,0401
DQ alpha dh      0102,0302
MTHFR                  positive heterozygous
V leiden              negative
Factor II mut    negative

I had aquick look through dr beer's book and the above coupled with High NK + cd56 at 22.6 + cd19 cd5 at 31 + negative LAD seem to put me in a very seriously bad place.... I am very scared that all this means it will be very difficult to ever get pregnant : ( i am due to start my nhs ivf lg protocol in sept)
I would really like to hear of success stories from people who had similar resuls to mine...
i'll come back later to catch up with everyone's post later as i am on my blackberry now.
I have my appt with dr g later this week to review the results.

Love 
Pinpin x


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## sarahh (May 20, 2006)

Hi Pinpin - well I have most of the same issues as you except the cd56.  I have had 2 x LIT in Greece and am hoping to start my ivf cycle in the next 3-4 wks so I'll let you know!!!!  My tnf alpha is higher than yours but cd19 / 5+ is lower.  I am MTHFR hetero too.  You have a partial match with your DQ Alpha numbers but think partial match you can still have husband / partner LIT but I know it depends on which numbers I think.    Its a long old road but all the issues don't mean that you CAN'T get pg - but nature has made it a little more difficult for us ladies (ok so that is putting it mildly!)   I already have a DD aged 2 1/2 yrs thro ICSI but have no idea whether I had these issues first time round or not .... so maybe it can work!!! 

Can anyone give me a bit of help:  I was told by Dr G to start Cilest on day 2/3 of this cycle so started last Tues on day 2, woke up with mild period type pains last night and have had a mild bit of bleeding today -anyone got any idea why?!!!  

Cath - good luck tomorrow.  I have to say I find Carisa a little on the "vague" side sometimes.  I feel that she is totally out of her depth there and has no idea about any of the issues.  I know it would be difficult to find someone with knowledge to work there (except you Choice!) but he should give her some training or something!  Are you getting DH's blood drawn in the morning and taking it with you??  If so what blood bottles do you need?  That is what I'm going to have to do next Monday.  

Right, off for a bath and an early bed.  

Keep your chins up everyone!!! 

Sarah x


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## Cath34 (Oct 14, 2008)

Hi Sarah,

When we had the blood form for LAD I went to the lab next door for all of the bottles etc.. and a bubble envelope. The 1st time I did this and sent the bloods in the post overnight, but this time I have decided instead of doing it today and sending it overnight tonight, I'm there tomorrow anyway so we will draw the blood in the morning and it can go straight to the airport, save it standing around. Its a day later but what difference will that make i the great scheme of things.

Regards cilest, its very strong nd my gp wasn;t happy me taking it due to clotting issue. Should you be taking it? Have you queried this with Mr G? I bled again when I stopped taking it on day 5 and very heavy too??! If your cycle is regular like mine maybe you dont need it as thats the only reason he puts people on it. Ask him as if you stopped you can still down reg before your next period id due like I have done. He told me (after i quieried the pill) that I should take clexane with cilest as well as asprin due to clotting, are you taking both?


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## superted (Sep 21, 2004)

Hi Girls

Cath I am seeing Dr G tomorrow lunchtime.  What time will you be there might bump into you.  What a pain that she forgot to transfer to book.  I make sure she writes it in in front of me.  Bit dizzy she is sometimes and yep she could do with having a clue what this ivf/immunes it all about.  Drives me crazy.  Any of us girls would be ok there mind you he pays her peanuts.  So what does that tell you    .

superted x


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## Cath34 (Oct 14, 2008)

If you pay peanuts - you get monkeys!!   

I'm now going there by 1pm. Hope to bump into you there superted.

I think I'll ask him about the intralipids blood test to see if it will work for me? Anyone know how much it is?

Also wantedto ask about a drug that can be given to relax the womb to prevent cramping after ET? Anyone know about this?


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## omni (Dec 4, 2006)

Cath its called ritodrine (or yutopar). They use it at the ARGC so Dr Gorgy has probably used it before. I have used it in the past as I have sometimes had difficult transfers. 

Not sure how much the Intralipid test costs on its own. It was an added £50 to an NK assay test when I did it. Probably best to combine as separately it may cost almost as much. I asked Dr Gorgy about the Intralipid test yesterday as a few have done it now. Fortunately some have shown as good or better results on Intralipids. I think I mentioned elsewhere that mine showed no reduction in killing power of NK cells by adding Intralipids whereas IVIg showed a good reduction. 

Thanks for everyone's good wishes! Nothing new to report, just hanging in there. 

Omni xx


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## Cath34 (Oct 14, 2008)

Thanks for that omni I will ask him about the drug today. Just on my way on the train. I wouldn't need the full assay done as I've had it already but wanted to know if Intralipids will help before having them incase it doesn't work for me. I don't want to have them if they don't do anything fir my Nks! Am I making sense? Am planning to have ivig x2 and 1 inttalipids but it would be nice to know what will work best for me before I have it!!


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## omni (Dec 4, 2006)

Cath,

It makes absolute sense. The cost of the test will be less than the cost of 1 intralipid and if you get a result like mine 1 intralipid will do NOTHING. I racked up 3 intralipids (£1050) before the test became available. Glad I won't be wasting anymore money on that now. 

Did you send your LAD bloods off successfully?

Omni


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## Toffee Girl (Mar 20, 2009)

Ladies

Clarissa is only with Mr G until November and whilst she has worked in a broad range of secretarial roles in SA, if you ask her, you will find her interests don't particularly lie in the medical field and I gather the entertainment industry is her first love. 

Can anyone tell me what Dr Tsagaris' next few clinic dates might be?  I heard rumour that there is no clinic on July 28th due to a public holiday - is this correct?  If so, is his next date likely to be two weeks later on August 11th and is anyone else going out again?  Having had one cryptic email from him the other day, I don't suppose I will get a reply to my question about clinic dates very easily! 

Love

Toffee Girl x


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## soni (Dec 31, 2005)

Hello everyone,

Hope u all are well!!!

Toffegirl,I don't know about the 28th July but I am going out for LIT on 11th August......I have found that Dr T answers phone if u call him at 1700 hrs GMT.This has happened with both myself and Peebum.

Omni, Great to know that ur doing well.....  for you.

Cath, Goodluck with downregulation!!!  

Sarah,you are not far behind Cath!!!All the very best.

Is anyone of you doing full cycle with Dr GI am still confused and can't make any decisions.I have to start taking humira pretty soon and bit scared doing it along side LIT.

Soni


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## superted (Sep 21, 2004)

Hi Girls

Sorry Cath I did not see your message until now so I may have seen you in the waiting room as when dh and I arrived at 1.15 or so as our appt was at 1.30 it was busy.  Dh had to sit on a seat on his own.  Then I went out to use my mobile until the sofa became available!!!!  Where you the blond lady who smiled at me opposite on the sofa  I was in the blue skirt/white top

Just to add to the ivig/intralipds test.  I think now its available its wise to have it because you then wont waste money on having one or other depending on your result.

My result was back today and surprisingly ivig does nothing for me however intralipids reduced it by half which means its good enough to use now.  So luckily its a fraction of the cost of ivig.  I have had ivig on the last 2 infusions and as it happens my cytoxity and some other nk cells ones have come back higher than a previous test I had which I guess would make sense if the ivig wasn't doing anything for me.  I feel lucky that the test is available because Dr G had more faith in ivig as its been around longer and was a bit sceptical about intralipds.  Although saying that I did have 2 alternative infusions of that prior to et and then when I got a bfp so I guess lucky that I did as I dread to think maybe what might have happened.  Drt G did say of  all the testing he had done most people have found they react better to ivig with very few with intralipids like myself.  I like to be different   

Anyway girls good luck with your testings.

superted x


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## mcat (Jan 1, 2009)

Hi there,
Hope you don't mind me butting in but I am looking for some advice and I came across you guys,
As you can see below I have had a fewBFN and am thinking about getting some immune tests before I start another cycle.
I don't have a clue, am I too early in going down this path or should I push at my clinic for the tests?
What tests should I get?
I am not near you guys but am sure other clinics must do some of these tests surely.

Hope you don't mind.

Mcat


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## Cath34 (Oct 14, 2008)

Hi Superted, yes that was me sitting opposite you. I was wondering if it was you? 
Well my scan went ok, lining was good but I had 2 follies which were already 10mm and so Dr G did bloods to check my LH which is 2.8 and oestrogen which is 153 Means nothing to me I'm afraid!! 
Anyway I;ve started stimms today yay   
I asked about the intralipids test and he said its part of the NK Assay and it couldn't be done separately? Is this correct? I've only just had my NK Assay done in April and am loathed to pay £600 again on the test just for intralipids, what do you reckon girls?
His plan is to give me IVIG x2 and Intralipids x1 (even though I dont know if it will have any effect)
We retested our LAD today also.
Omni - I asked him about the drug to prevent cramping and he said its been on and off the market alot and that usually the cramping is due to NK's anyway?! He wasn't keen I dont think.
Best of all i didn't get charged £90 today    but I did pay an awful lot for drugs!!!!!!!!!


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## sarahh (May 20, 2006)

Hi Cath - could you possibly PM me with what drugs you have got from there and how much it cost you - just so I know whether to get my prescription drugs from him or whether to bother shopping around for the drugs.  I don't really want the hassle but if it saves £££'s then I might try.  What stimming drugs are you on??  What is your plan then?  I thought that he wouldn't start stimms if you already had leading follies?  What cycle day are you on?    You started on your Clexane etc. as well??  Sorry for the million questions!!!! I would like to say you can ask me some back but since you are going to be ahead of me that is unlikely!!  I didn't quite get your response about the LAD bloods - sorry its me and I'm tired - did DH go with you today to have blood taken or did you take his with you??  

I find the answer about testing for the intralipids strange as it must be done separately?  I certainly don't want to spend another £600.  I guess just get the test done next time you have your NK's checked (when you get your BFP  ).  

He did not tell me I should be taking Clexane when on Cilest, I am already taking aspirin tho.  I did question with MTHFR hetero whether I should be taking it as I knew someone who was MTHFR **** who had been told to stop taking it (  ) but he said no prob with my issue??  

When I asked him how much the procedure I'm having on Monday (saline hysterography??  or something that sounds like that  ) was £300 and a follow up £90 so looks like I'm going to get charged again.  Perhaps if I spend £££'s on drugs he'll let me off too!  Did you get charged £120 for your scan?? 

Well perhaps I'd better stop asking you questions now and give you time to breath    When you next up there then?  (oops sorry, another q!)

Sarah x


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## Cath34 (Oct 14, 2008)

Hi Sarah , you are funny fair play.  
Answers are on their way to you!!


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## Cath34 (Oct 14, 2008)

Well firstly he didn't know which drug due to 2 follies it was a toss up between fostimon and merionel, but I had to but a box of each, @ £500 each! £1000 in total for drugs!!!!!!!!!!!!
I asked him what about the drug I dont use and he said he's swap it next time so fostimon is going back!
I got charged for FGMA which I assume is the scan @ £100 and £35 for bloods I think. 
I'm on 300IU if Merionel (I think thats right?) and 0.2 suprecur, he did consider increasing this to 0.5 but then decided no?
Nothing else yet, just bloods Fri but doing them locally and getting them to fax result to him to save a trip and maybe again Mon (unless bloods indicate I need scan on Mon) I'm trying to do as little visits as poss only going when scans needed.
I'm gutted about the Intralipids test though as I would have liked to know if they work for my NK's
I think I start pred on stimms day 6 but he hasn;t given me any further instruction yet. 
Hurry up and get cycling with me Sarah  
Andy came up with me to do LAD there, to save blood hanging around from home to lab. He asked me about LIT again if required (where's his faith?!!!) I think I will do PA next time to save Greece!! We are only a partial match so its ok and it would only be a booster anyway, how about you?
Not sure if I need to go Monday, he's going to let me know. 
Hope you'e ok, sorry for  v long post!! xxx


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## Choice4 (Aug 14, 2008)

Hi all I saw this article In support of IVIG
Please read or print!!

http://www.inciid.org/printpage.php?cat=immunology&id=161

Copyright content removed, link added


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## Sally Sunshine (Feb 12, 2008)

Hi

Sorry to butt in to your thread ladies.
I have been using Dr G's office for post BFP immune support and was interesting to read the article Choice has posted. Especially this bit:
"Therefore, it is probably unnecessary to continue IVIG therapy beyond the 6th week of gestation, the time at which this conversion occurs."

I'm suffering a confidence crisis at the mo and any advice you can offer will be really gratefully received. 

I am now 13 weeks PG and had borderline CD56 this week and had yet another Ivig infusion. My 50:1 and 25:1 were normal. I'm finding the trek to London and drain on finances quite stressful balanced against the overwhelming urge not to ignore Dr G's advice in case anything bad happens to our longed for little one. I feel trapped! 
I'm also finding Dr G's and his secretary's organisation abit confusing and my trust is starting to waiver. 
I called up for my repeat results this week and I whilst they thought the phone was on silent, it wasn't, and I hear him bawling at her and critising me for calling up as if I had no right - he had told me to do so after charging me for a repeat nk test! When he came on the phone to me he was as nice as pie but I was shocked and saw a different side to him. 
I'm doing the repeat nk mixed with Ivig and Intralipids next to see if the latest Ivig has calmed the CD56 down and if Intralipids will be effective in the future.

If anyone has any advice for me I'll be so pleased - I just don't know what to do for the best at the moment.

Thanks

SS xxx


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## superted (Sep 21, 2004)

Oh Cath How funny that it was you maybe if I bump into you again I will get the chance to say hello properly.

As for the test re intralipds working better I would perhaps wait until you have had the cycle because that is when DR G seems to do the testing as I like you had an ivig and intralipid prior to et although ivig is expensive all angles are covered and the test is v expensive to have.  That is what I would do personally.  Then when you get that wonderful bfp you could ask him earlier to have that test done?  

Choice - interesting reading that is.  Have to say immunes get more confusing the more you read!!!!!

Sally sunshine - sorry you had to hear the conversation by Dr G and realise it was off putting.  I personally have a lot of faith in Dr G but thats maybe becasue this is the furthest I have got with immune issues almost 12 weeks and feel I have got this far and dont really want to stop because of fear what might happen.  I feel he is consistant in his testing at the various times etc but obviously we dont get to hear or see what really happens behind the scenes.  I too have just had the test you will have and you will see from an earlier post it came back that ivig does not work for me but intralipds does.  So a worthwhile test I feel.

Hi to everyone else.  Must dash cos at work.

superted x


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## super9 (Aug 5, 2008)

Hi Ladies

Have any of you been successful in getting Gestone from your GPs once you have a confirmed pg? I have just spoken to my GP and they are happy to prescribe clexane as they recognise this as medication to sustain a PG but not gestone! Bizzarre!


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## Cath34 (Oct 14, 2008)

super 9 - I asked my GP for gestone before my treatment and she said that they're not supposed to but to ring her direct and she'll do it for me on the sly!!!!  I managed clexane too and I got the feeling they weren't to do that either!!! Nothing ventured nothing gained! Go for it. 
superted, I'm glad its all going well with you. Now that you are pg how often does he need to see you? Is it just for scans? I agree that I should test intralipids with the NK Assay after all treatment to see how things are looking. I'll still have x1 intralipids  just incase it does do something! 

Sarah hun I did reply to you last night, have you read it, does it make sense to you?  I will pm you.

Choice - did you do your LAD retest?


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## BubbleMac (Apr 15, 2009)

Reading some of the comments about Dr G , I wonder if any of the fertility clinics and fertility governing body keep an eye on sites like this ... overall, I hope so (even though I feel compelled to have removed my profile pic, just in case: I don't want to be identified!)

Dr G has certainly helped a lot of ladies in difficult circumstances and given many new hope, which is the *main thing*. That said, he has displayed notable changes in attitude to me so I was shocked but not hugely surprised to read SS's post. I'd also add that, like many who've spent hours receiving IV tx, I've got to know Clarissa a bit
Back to my first point, the clinic exists to help ladies like us achieve the magic BFP and go to term so DP and I are keeping that uppermost in our minds. _The tx can work._ If we decide to go for one last try later this year, we will still go with Dr G; reading how he's helped so many on FF offers much welcome hope. Plus no clinic is perfect and we'd like to put down probs with the Fertility Academy to growing pains and a rapidly expanding client list - which is a good sign.

(As an aside, I had updated NK and TNF-alpha run after my latest BFP. (V interested to read SS's phone experience: I would have bet money that the same sort of thing was going on when I kept insisting that I didn't need to come in to get the results - that we wanted them over the phone. Took a while but we got there! ) It would seem that, despite 1 ivig and 2 intrallipids plus steriods, none of the tx made any difference; NKs remain at pre-tx levels. Plus tests indicate that intrallipids do absolutely nothing for me. My arthritis has not only flared up post-cycle but has also advanced to my right hand and left jaw so I'm waiting for an appt with my hospital, which has said that it will put me on azathioprine, which is an arthritis med safe for fertility and designed to suppress the immune system We'll see what happens ... though, at the moment, I'm incredibly low about it all ... lots and lots of uncontrollable crying. If I can't cope with my arthritis (when it flares up), how will I cope with a little one? Also, got a kick in the teeth this week when a) the rheumatology nurse told me, with slightly bored disdain, that other ladies with my condition get PG so it's just "bad luck"; b) a lady on an arthritis site, having read about my fertility/immune tx, told me not to try so hard!! Old bag ... she has no idea what we all go through.  And c) I read that high levels of protein is not good for those with arthritis ... so good for the embie but not for me. )

SS - now that the little one is on board and mindful that you're now armed with info on what your levels should be, is there a place closer to home that will offer the tests and tx? I know that some clinics offer a home service for ivig. I've not had it but others on FF have and hopefully they will offer some info. It would still cost but would not include the travel. Just a thought ... 

I seem pathologically unable to write a short post.  Mucho apologies! (Giving up work means too much time on my hands)

BMx

I'd like to remind everyone that the internet is a publishing medium - and that comments made on message boards sometimes do need to be heavily moderated (prettied up).
The reason for this is to protect both the publisher and also the person who posted the comment from potential legal action. I am sorry if anyone feels that this is unfair


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## Choice4 (Aug 14, 2008)

Hi Girls
I have not posted for a while as not much happening!!
Cath I have not tested yet, May be next week.

I went to Dr G today and paid for the tests and collected the bottls from the lab, as DH is finding it difficult to make it to the lab before time, so I am going to DRAW his bllod ( Like a vampire) and take it with me on Tue to the lab and get the lab to Draw my blood for retest.
I would be doing the LAD, Repeat NK profile/ intralipids etc

I went to St thomas hospital today, and the blood test dept told me they do LAD, they checked in their special book, so I got them to Draw my blood for LAD, NK cells and TH1:TH2. ( I would wait and see what happens), I only went to check thyriod, and was having a chat, about the other tests I have to do in TDl lab, and they guy at st thomas , told me that they can do all test.

I also got my steriods, folic acid, metformin, Vit B,iron tablets from Gp on prescription, she had already given my clexaine ( I have a prepayment certificate so did not pay for any meds today).

SS: regarding your post, I know that some of Dr Beers patients have been on IVIG till 35wks all depending on the nK cells, If you are finding it difficult to go to london, you may want to use health care at home, for the ivig, and you can send in your bloods by post to the lab, to safe yourself a trip.
I know it is expensive, but you would soon get to the safe zone, and may not need ivig that much
Regarding clarassa, at Dr G's office, I am not sure if she should be discussing her wages, but as far as it is up to the minimum wage, then it is betwen her and Dr G to decide, I am not sure we should get into that, I think wage increase comes with effective performance, but it is not for me to say.

I must say I find Dr G, a very good Dr , who takes great care and attention in what he does, He is a one man practice which sometimes may be quite stressful. I have been to many Drs, but sometimes it is difficult to get a one to one as you get with Dr G. Most of the time you get to speak to their nurses and never get to speak to the dr directly

I must say that no one is perfect, and things are subject to change as times go on. I think it is the closeness and the one to one, that gives us the oppurtunity to notice and critise everything.
I am not sure the girls or receptionist in other clinics discuss their wages with the patients.!!

May i suggest that if anyone has issues or not happy with anything to do with Dr G, it may be better to raise this with him. I am not sure if it is approprate to post it here, as there may be some misinformation, or misunderstanding, which may need to be clarified between you and the dr.


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## superted (Sep 21, 2004)

HI Girls

Cath - I am just keeping my immunes under control with Dr G now.  I had my 6 week scan with him and another one when I had a bleed but other than that I will be under my local hospital.  Just going back for repeat nk bloods etc and intralipds as and when the need arises.

I have to say he has been fantastic and without his guidance and help I would not have got this far.  I believe because he told me about low progesterone and mine was on the v low side and which I now have to have gestone it has helped me.  And Super yes I was lucky my GP prescribed this and my clexane.  A relief I can say as it certainly saves a few pennies.

Choice - glad you are getting your bloods done in all one place less hassle and that.  When are you cycling again?

As regards any clinic I think we can find a fault with any of them and as Mr G is a one man bad I find him very approachable - ok it took me a while but it takes a while to get used to him and vice versa and he really is a lovely man who even took the time out to call me today abuot when I should come in for my follow up appt after my repeat bloods.  He is getting extremeley busy and unfortunately some things go when that happens but I still feel he has helped many a person who would not have been helped at many other clinics.  He even has his mobile if you should really need to contact him in an emergency and where can you get that now.  

I hope all of you ladies find success as a lot of you are also cycling with him too.

superted x


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## sarahh (May 20, 2006)

Cath - no, I got a one liner PM asking me how I was getting on with the Cilest and being hetero?? Did you PM me more or post on here??  I can't believe your luck getting your Gestone & Clexane on NHS - can you get a bit extra & post it to me    I have to battle for everything with my GP, no chance getting any meds I don't think.  Its yet another thing that really makes me cross, not only to we have to cope with the unfairness of some getting NHS funding and some not at all but the meds that they will prescribe are also so different.        Sorry girls, rant over!  

I was shocked to read the post by SS but not surprised tbh. 

I phoned up today because I have had increasing pain in my calf muscle and as I started Cilest last wk and it lists that as a reason to stop, so I wanted to check with him.  He told me quite bluntly not to stop it but to go to GP to check it out and "reassure" myself.  Made me feel like I was being a hyperchondriac (sp??!).    I do feel that he should check our files before he gives us advice because I don't feel that he remembers who he is talking to all the time.  

Anyway, the result of the GP visit this am is that I'm having a scan on my leg tomorrow to make sure no blood clot   

I do still feel that I have to double check everything and really I was looking for a clinic where I didn't feel like that (that is why I chose Dr G over ARGC because I knew I was going to get totally fed up with their disorganised manner).  BUT I don't think that exists does it ladies? 

On to the subject of Carisa (that is her name I'm sure, not Clarissa, because she spelt out her email address for me when he was off) she shouldn't really moan about her salary to his patients, that is not really v. professional is it.  And on the other side, he should not get fed up with her if he is paying her peanuts (think there was a saying about that yesterday  ), and to be honest, he should provide her with the necessary training to cope which we do not know whether has been done or not.    So really, that is definitely between them.    I really think he should get someone who can help out more!  

Does anyone know exactly how much he charges for the NK assay including intralipids?  I am debating whether to have the test before our tx.  Or whether it is just cheaper to have the intralipids not knowing whether it works or not?  

I'm getting more and more scared about this the nearer I get to tx!  Hey ho, deep breath! 

Sarah x


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## Cath34 (Oct 14, 2008)

Omni and everyone else - The Intralipid test doesn't cost less than 1 intralipid does it? It has to be added onto NKAssay and isn't that £600?


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## Choice4 (Aug 14, 2008)

Cath
I paid for mine today 
Nk panel and the intralipid test £650 ( may go up soon)
Lad retest £200

Dr G only worked till 12noon today as he was going for his daughters graduation as a lawyer, he also has a son that is a medical Dr.

I asked him about the sharps box disposal
He said he doesnot take them ( i guess because he is a small clinic!!)but that he has been told by few of his patients that the nearest refuse collection area near you would take it.

Not sure when i am cycliing yet, depends on lining!!


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## Sally Sunshine (Feb 12, 2008)

Thanks for your replies,

Seems there's been some common experiences here and from what I can conclude the clinic is becoming v busy and perhaps explains somewhat the organisation and freyed nerves from time to time. 

I feel it's important for people to share experiences on here - in addition to discussing this with Dr G himself, it certainly helps keep informed on matters and a sense of perspective on them.

Sarahh, hope your scan on your leg goes ok tomorrow and it's not a clot. Also that the pain goes soon.

Bubblemac, good luck with the new medication. Also, hope your arthritis symptoms improve for you. 

Superted, congratulations on your pregnancy and hope the next 2 trimesters go great for you. An exciting time!

Choice, good luck for your cycle

Good luck to everyone on here 

Thanks again, 

SS


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## omni (Dec 4, 2006)

Cath £650 includes Cytokine test. NK *follow-up * on its own is £310. NK *assay * (i.e. including IVIg effectiveness) is I think £360 and NK *assay * with intralipid £410 (that is what I paid). But you don't need to do the assay for IVIg only that for Intralipid.

Ask if you can do NK *follow-up * with added intralipid test which hopefully would be £310 (for the follow-up) plus an extra £50 for the Intralipid add-on.

So maybe £10 more than the cost of 1 intralipid? If you have to do IVIg assay and its not possible just to add the intralipid assay to the NK follow-up, it would be £410 (i.e., £60 more than 1 intralipid infusion).

Omni

PS: The cost of *follow-ups * at ARGC is £560 for both NK and Cytokine. If you do them individually it is £310 each. Not sure how much for NK *ASSAY * combined with Cytokine or for added Intralipid assay.

25 gms of IVIg is around 1290 through healthcare at home (including infusion) and just under £300 for intralipid (the cost of the Intralipid itself is just £12!) but you need to give them a prescription for both.


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## superted (Sep 21, 2004)

HI Girls

The intralipid at the moment is just an extra £50 added onto the cytoxine test which is as Omni says.  Mind you Dr G did say it may go up so get in quick girls.

I didnt realise Dr G had such older children I find it hard to work out how old he actually is? He maybe fairs well!!!!!

Well have a good weekend everyone.

superted x


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## Choice4 (Aug 14, 2008)

Superted

He has the 2 big ones, and also a 9yr old.

Next time i would ask him how old he is!!, if you would like to know.!!

I retested my cytokine as after 4 jabs of humaria it has gone up, but I ahope the LIT would have brought it down!!
We would see!!


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## Han72 (Feb 15, 2007)

Hiya and excuse me for butting in ladies

Quick intro - and a few questions!

I'm considering going to Gorgy for immune tx while I do the actual IVF bit here in France.  I've had NKs and cytokines tested at the ARGC already so I was wondering whether any further tests done via Gorgy would count as follow-ups and therefore be cheaper or if I'd end up starting from scratch and paying the full whack...?

Also am I right in saying that he charges 90 squids for a consult?

Hi again Choice  - where did that template letter come from please? I want to print a copy from the original and shove it up my French consultants.. er ... nose      Sorry the Humira hasn't done the trick for you hon. I've got to say I'm not convinced that it works for everyone, I'll definitely be looking for IVIG/Intralipids and steroids on my next go.

Soni/Cath - am I right in thinking you can't get LIT in the UK? Or is there another reason why you're doing it abroad?

SS - I agree that it's good for people to share their experiences as well as discuss them with the doc. If we don't then how do we know when there's a wider issue that really needs to be addressed? It's good for the clinic and it's good for us as consumers too!

Sarahh - I think with the best will in the world and at the best clinics in the world c0ck-ups will still happen occasionally so it's always good to double-check things. The docs and their staff are only human so mistakes, while rare, can still occur... And it's good to be informed I think (but then I am a nosy cow!)

Right, time for me to butt out for now methinks! Thanks in advance for any help/advice and hope you all have a lovely weekend!

xxx


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## Cath34 (Oct 14, 2008)

My God, it gets more and more confusing!!!!
Well my cytokines are normal and so I wouldn't need that tested really. The trouble is I'm on day 3 of stimms so there prob wont be time to do it and get results anyway before EC. I think I'll have them anyway and retest everything after the cycle to see if anythings changed and   that the price hasn't gone up!!!!! 
Omni - thanks for all the info though,very informative. xx


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## Cath34 (Oct 14, 2008)

Sarah - I have to go to Dr G on Monday too. After my bloods today my oestrogen levels are too high and he has now reduced my drugs by half and also put me on another drug fostimon?? Its all over my head   I have to go for a scan and more bloods Monday do we could meet for a coffee if you like?  I'm glad your leg is fine. xx


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## twinkle123 (Mar 1, 2008)

Hi everyone.

Don't know if you remember me but I introduced myself a few weeks back as I've got my first appointment with Dr Gorgy on Monday.  I have to say, reading back some of the posts about some of you being disappointed about the disorganisation and his assistant, I'm getting slightly worried about my appointment.

I don't really have a clue what I want him to do.  All I know is I'd like any tests he can offer while still doing my next cycle at my local clinic.  Aberdeen-London is just too far to be commuting!

We're flying down on Sunday morning and back home on Monday evening so I really want it to be worthwhile. Does anyone know if his clinic is open on a Saturday as I'm now getting worried about our appointment not even being written down and would like to phone to confirm! 

Probably worrying over nothing but that's just me!  

Lots of luck to everyone  
Susan
x


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## Pinpin (Nov 4, 2008)

Susan - Like you i am very new to Dr G, I only saw him once an then had the blood taken at the laboratory next door (some tests were done there and some sent to chicago). Dr G's secretary faxed me through my results at the end of last week and we are going to see him tomorrow to review results so yes the clinic is opened tomorrow morning  
Like you i'm a little worried now about some of the comments I have read  
My first impressions of Dr g the first time we went were good though, he really seems to know what he is talking about and took all the time we needed really. Also he was very kind to accept to see us on a saturday when normally he only does egg collection on that day and this to me is a sign of someone who cares to accommodate and customise his treatment to his patients. Quite a few ladies on here are pregnant and for me this is the most important deciding factor because it means his treatment has helped.

I am v. worried that he might say tomorrow that 1/ my results are horrendous and 2/ that we do not have enough time to treat them until my NHS cycle starts in september.

Cath - i hope your appt and scan on monday go well 

Nix - sorry i can't help with your question as i'v only been to dr g once and going tomorrow for the second time to review our results. I believe we went for the full shebang of immune testing as the bill was £1,750   but it was the first time we were being tested.
BTW you live in my homecountry   are you a brit expatriated in France then or are you french like me?

Choice - i hope your level have come down. You sound so knowledgeable about the whole immune business. When do you think you will be starting your next cycle ?

SS - yep i definitely agree too that it's important for people to share different experiences. I hope you have managed to make the choice of whether or not to have more ivig  

Omni - if i got this right you are about 6 weeks pregnant thanks to dr g   Congratulations. Would you mind giving me a bit of background on your story. I'd love to get some inspiration 

Bubblemac - i hope your arthritis gets better hun   I too have an auto immune condition called ulcerative colitis. I hope you get better quickly and get to start cycling again soon 

Superted - i was surprised too to read that dr g has grown up children old enough to be a dr  he seems to be in his forties at most !

Lots of people have told me that I was probably getting ahead of myself doing immune testing before my first IVF   The reasons i am this are 1/ i have auto-immune condition already so i know how much damage your own immune system can do to your own body... let alone a foreign one... 2/ i don't want to waste IVF cycles and then realise i should have tested for immunes 3/ i do not believe in the "unexplained" diagnosis. 
I am quite worried about my results being so crap I was expecting maybe one or two markers to be high but not as many and as much as i have. I am also worried about having immuno-suppressing treatment in the midst of a swine flu pandemic  

I will update you girls after my appointment tomorrow

Pinpin x


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## Han72 (Feb 15, 2007)

Salut Pinpin! I'm a brit ex-pat living in les Yvelines with my French DH  Which part of France are you from? I guess you haven't got a carte vitale or you'd be here taking advantage of the very generous social security - 4 freebies! Pity they don't do immunes here 

I think you're absolutely right to check out the immune situation first if you already have an auto-immune disease and I totally agree with you on the "unexplained" theory.  To me it just means "we can't be bothered to investigate properly"!

Good luck for your appy tomorrow hon!

xxx


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## sarahh (May 20, 2006)

Happy friday evening all!!  My leg is fine, no blood clot, still standing   Actually got seen 15 mins before my appt time, the NHS must be on the up!!!!! 

Susan p - the concerns we all have are probably sounding far worse than the reality.  What you have to remember is that Dr G is a one man band BUT he seems to get very good results nevertheless.  As Nix said, no clinic is perfect and you are always going to have to check & double check to satisfy your own mind about stuff.  He is very good with the immunes and I'm sure he will have some guidance for you.  The clinic is open on a Saturday sometimes but I'm not sure if his PA is always there.  I'm sure your appt time is written down!  Mine is at 1pm so if its then perhaps you'd better check!!!!!!!  

Cath - what time is your appt?  Would be great to meet altho I warn you I may be a bit stressed having rushed to the hospital with DH in the morning to get his blood to then drive back to station, get train / tube, get to clinic, pick up blood form, get my blood drawn & all before 1pm when the bloods go off (phew, draw a breath girl....).  And then I get to put my legs in stirrups for a bit of poking & proding around    Lucky girl     

So if you are on Fostimon now, you don't get to take that box of drugs back I guess?   

Nix, the first consultation with Dr G is £120 I think, then £90 for follow ups (bargain!).  I'm sure if you have your results from 1st lot of tests then you would only be charged for follow up.  I'm in the same position as I had mine tested first at ARGC.  If I find out on Monday I'll let you know. 

Can someone try to enlighten me about the dosage of IVIG - I think Choice was taking about 40 (mgs?) rather than having 20 or 25 (mgs) in one go  How do you know what is best for you?

Omni - when is your next IVIG / Intralipids scheduled for??  How you feeling??    

Off to tackle the pile of ironing threatening to take over the house in a militant manner soon   

Sarah x


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## Choice4 (Aug 14, 2008)

Nixfo1
This is the link about IVIG
http://www.inciid.org/article.php?cat=miscarriage&id=161

Sarah
For IVIG Dr G , likes to do smaller dose first, So i think he would do 24/25g in one drip.As he likes to monitor your response, But he may give you 2 doses , at separate time intervals. He says he think 40g in one go is too much for the system

In USA, Dr Shers gives 40-60g,

Dr T, in greece recommends 25g ivig at 20days interval

While at the Lister hospital i think they use a smaller dose of ivig

So the Drs are different, it depends on what works for them and what they are confident using

I hope your appt. on monday goes well, and you can meet up with Cath again

/links


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## Cath34 (Oct 14, 2008)

Sarah - He told me to take 1 merionel instead of 2 (150iu) and the same dosage of Fostimon tonight and Sunday night but tomorrow just take 150iu merionel. My oestrogen is too high and he wants to slow me down he said. He also said bring all drugs with you incase I reduce the dosage and swap them, so we'll see. Both boxes were £1000 in total. (He's making a bomb  ) well not literally a bomb! 
My appointment is just before you at 12.30, do you want me to stall him for you?!   I  usually go for food afterwards in a little cafe down Marylebone Street, so I could wait there for you if you fancy a coffee and a chat. My mum will be with me and my brother as he has volunteered to drive me. 

Susan p- please dont worry, the mess up with my appointment was the 1st time its happened and he will always make time to see you anyway, especially if its their mistake but I'm sure it will go to plan. I found him excellent in my consultation, he knows his stuff fair play.
He rang me Weds night about 7pm and again tonight to give me instructions so I do feel I am i good hands, and believe me I would kick off if I felt he was taking the ***!

I asked him about 40mgs of IVIG and he said 2 doses of 25 would be better. He's only doing 40mg for 1 person who has requested it due to USA protocol (Choice I reckon its you he's talking about)
Sarah, dont worry hun, I 'll wait for you, so keep calm ok


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## superted (Sep 21, 2004)

HI Girls

Choice - No I could never ask Dr G his age.  I would be so embarassed!!!!!!!!!!! I just thought he had a younger child as I had heard somewhere but not 2o lder.  

Anyways hi to the new girls just quickly wanted to reassure you that Dr G is fab and I think you should not worry about your appointments.  He is very accommodating at short notice and sometimes yes he might overrun in his timings but generally he gets everything sorted even ivig or intralipds on the day of your appointment.  He gives a very personal service he even phoned me the other day when I wanted to check on something about my follow up bloods so he is on the ball but very busy.  

Have to say there are always going to be bad points about any clinic you go to and maybe we have over highlighted a couple of little blips lately but saying that we need to express ourselves because we are probably a little upset when something doesnt quite go to plan.  But on the whole you are treated as an individiual and not part of a conveyor belt which can be so of so many of the London clinics.

So please girls rest assured you are in safe hands with Dr G.  Without him I wouldnt be where I am right now.

Hope that helps.

Have a lovely weekend the sun is shining for now hurrah!!!!

superted x


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## Choice4 (Aug 14, 2008)

Superted
I would ask him his age next time !!!!
Please could you update your signature so we would know where you are now
I know you are pregnant, which is wonderful, but how far etc
Congrats and keep going my dear!!


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## Pinpin (Nov 4, 2008)

Hi

I had my appt to go over immune results with dr g this morning and he said that although quite few markers are high (raised NKs and v. high tnf a) quite a few things are on our side (v. good AMH + my age + results of NK assay shows my raised Nks respond v. well both to intralipids and ivig). 
In brief he said i need I'll need 1 intralipids and 1 ivig in sept/oct when i start tx. 
I also need LIT for negative LAD however he said my results show i must have got pregnant at some stage as my results are not right down but probably wasn't pregnant long enough to show on a bfp    As i only have partial DQ alpha match with DH he said we had a choice of having LIT either with PA in london with DH blood or in greece with donor blood which might give a slightly better response but not sure. Given the tight timeline with start of my NHS ivf in september we all agreed it was probably best to go with PA and he said that if i got a bfp he would retest super quick in order for me to get a booster. I asked why he's not doing donor LIT himself and he said he was seriously considering starting to do it! 
I would also need Humira for my raised TNFa so I did a test for TB. We discussed our concerns over taking humira (worried about swine flu + sometimes it can increase them rather than bring them down) he said my concerns are fair enough and that some women don't want to take it especially as it's our first ivf. He also explained that TNFa are high because they are interlinked/stimulated by high Nks therefore by bringing Nks down with ivig + intralipids the TNFa should also go down. DH and I want to wait for TB results and then decide to have humira or not.
Finally I need gestone and something else to treat MTHFR hetero (he said that was treated well not to worry about).

I'd welcome your comments girls in particular about humira and whether it is worth having or not and also comments about LIT with PA?


I'd like to say that both my Dh and I felt that this second appt with Dr g went well, he does take the time to explain and customize his treatment it seems. When i talked about my concerns over having immuno-suppressive treatment in middle of swine flu epidemic as I work in a very big open plan office   he said he would give me a note to support my request to work from home at work.

Salut Nix - thanks for the good luck   sounds like you are in la banlieu parisienne - do you like it there? I'm from Burgundy, been living in the UK (surrey) for about 11 years !!! My DH is also french but since we have been here for such a long time i'm afraid we do not have la carte vital anymore  
I feel better knowing that i am not missing out on freebie immune treatment though as immunes are horrendously expensive if they had given them for free on the other side of the channel i might have had to move back home   I understand the french docs are a bit reluctant to treat 'unexplained' infertility - is that right?

Hi to everyone else, i hope you all have a nice weekend!

Pinpin x


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## Choice4 (Aug 14, 2008)

Pinpin
I am happy your consultation with Dr G went well, Sure you are in Good hands!! 
I had 2 humaria,, and tnf came down, then 2more humaria and tnf went up
I had 1 LIT with Dr Armstrong ( with DH)and 2 in greece ( with donor)
LIT and ivig helps reduce TNF I would retest soon
A lot of girls like to go to Greece for LIT as Dr T, does it like Dr Beer, under the skin, twice at 4wks interval then retest
Dr Armstrong do it in the vein and under the skin once and no retest

Here is the LIT link

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


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## Pinpin (Nov 4, 2008)

Thank you Choice

Just a thought ....   if ivig reduce TNFa would it add value to have 2xivig + 1xintralipids if i decided not to have humira??  cost aside that is 
Do you know what the name of drugs to treat MTHFR Hetero are ? (he said it quickly, I think he said i needed gestone + high dose folic acid + ??clexan maybe??) Do you know when I'd need to start taking these as he hasn't given me a prescription but wonder if i could get these form my GP to save a few £££ ?
Also he hasn't mentioned steroids/prednisolone, do you know if he prescribes them generally as a complement?

For LIT that's what i understood that the general preference was for greece but our timings are so tight i think we may have to settle for PA... argh! i hope that will do the trick.

Pinpin x


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## Han72 (Feb 15, 2007)

Hi all

Choice - thanks for the link hon!

Pinpin - Glad your appy went well hon! Re: Humira - it's a personal choice I think and until they come up with some way of figuring out who it works for and why then it's one of those things that you take a chance on. Some people find it brings their levels right down after 1 or 2 goes. Others, like Choice and myself have found that it makes levels spike instead. Having tried it twice (2 lots of 2 injections) and still not seen my levels drop (until after I'd had IVIG and mega steroids) I wouldn't bother with it again. Despite this, I know that if I went back to the ARGC they'd recommend that I take it again despite the fact that it hasn't worked in the past. But as I say that's my personal experience - I bet if you do a search you'll find plenty of girls who swear by the stuff. Personally I just swear AT it   

My doc here is pretty good about the whole investigation thing (can't speak for others though!). The problem is that full on immune tx is viewed as something akin to voodoo over here. So my guy's happy to prescribe steroids and clexane but he won't touch IVIG or intralipids and don't even get him started on LIT 

Erm.. what's PA by the way? Is it the name of a uk hospital/clinic where they do LIT Will have a look at the link that Choice (once again  ) has kindly provided!

Cath - 


Cath34 said:


> (He's making a bomb ) well not literally a bomb!


   Watch out, you'll have special branch banging on his door if you're not careful   
Argh! 2 lots of 25 Clexane = mucho bruises  The ARGC gave me 40mg syringes the last time and it was MUCH better but I still ended up with a smiley face of bruises round my belly button before I figured out how to avoid them  (Don't press too hard, don't pinch the skin too hard and don't rub afterwards!) But it's great that your cytokines were normal. With regard to getting your results back, if it's NK's and a follow-up they can get those back within 3-4 working days so you should still be ok...

Susan - good luck for your appy hon, I'm sure it'll be fine! 

Apologies to everyone I've missed, hope you're all well and having a nice weekend!

xxx


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## twinkle123 (Mar 1, 2008)

Thanks to those of you who have calmed me down about my concerns about my 1st appointment on Monday.   Just me being my usual worrying, panicky person.  

Had a phone call from them this morning to remind me about my appointment on Monday at 10am!!! Very interesting seeing as the appointment was for 12.00!!! Anyway, makes no difference to me as we're flying back up to Aberdeen at 7.30pm so I suppose the earlier the appointment, the better.

Getting quite excited now.  Picked up the photocopies of our notes from our local clinic to take down with us and have spent ages reading over them today.  Makes interesting reading. 

Off to pack an overnight bag for flying down to London tomorrow.
Thanks for all your advice.
Susan
x


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## Cath34 (Oct 14, 2008)

Susan - I got a phnecall from Carisa this morning also to ask what time did Dr G tell me as there was a double booking!!!!!!
Mine is at 12.30 and she said that it was still fine for then so God knows who's had to change?!!! Dont worry he will see is all anyway.
Good luck anyway. xx


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## sarahh (May 20, 2006)

Hi all,  gosh it is busy on here - we'll be taking over ARGC board soon!!!!!  (Ok, we may need a few more recruits first...!!!) 

Cath, ok that would be great but I don't want to hold you up so don't feel obliged to wait around.  What is the cafe on marlyebone high street (is that the one if you sort of come out of the office turn right and right again and the street at the end?  We went to a nice place called Le Pain Quotidien last time we were there.    How you feeling hon?  Hope your ovaries not feeling too overworked yet??! 

Susan P - good luck for your appt on Mon.  Think you mean your appt was swapped to 10am?  Will miss you then as I won't be there till nearer lunch time but good luck.  

Nix - PA is Paul Armstrong based in London, the only one that does LIT in the UK that I know of.  

Pinpin - I am MTHFR hetero and he said I wouldn't need to take high dose folic acid??  And yes, I think Clexane is the other drug used to treat it.  Whether you can get them from your GP is as much as a lottery as getting IVF funding - some on here have, I definitely haven't (altho I'm going to have another final attempt!!).  You don't need it till you start on Stimms.  

Have a nice Sunday everyone.  

Sarah x


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## Pinpin (Nov 4, 2008)

I fell asleep on the sofa in front of the TV then DH woke me up to go to bed an hour ago and now can't sleep...  

Sarah - thanks for confirming it is clexane    Don't worry about the high dose folic acid the reason i need it is because I have ulcerative colitis and with the drugs i take to treat it it means my body doesn't absorbs folic acid as well as without the drugs  
I hope your appointment goes well - where are you at? have you started tx yet?

Nix - thanks for your honest opinion on humira   i still need to mull it over but leaning towards not taking it this time. My DH was saying earlier that he didn't sense that Dr G was pushing it too much once we expressed our concerns and he did say there was a risk it could have the adverse effect so not sure i'd want to take that chance 

Susan - i'm glad you're reassured. I'm sure our appointment on monday will be very beneficial and hopefully the first step towards realising your dreams  

Cath - good luck also for your appt monday - may I ask where you're at? are you just about to start stimming?

As for appt times maybe maybe i should not speak tooo soon but on both appointments so far he has seen us on time.


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## Choice4 (Aug 14, 2008)

Pinpin
For MTHFR the treatment is high dose folic acid (folguard)which you are already taking.
If your TNF is quite high, there is no harm is doing one humaria, it may reduce things, Humaria and IVIG work better together.

If you are planning on doing LIT with DR ARmstrong, it may be a good idea to get the blood tests done ASAP, so there is no delay with that, the blood test expires after 30days, and he would want you to repeat them
I got mine done on the NHS, then took the results to him

Here is a list of the LIT blood test you need, with Dr Armstrong

LIT BLOOD TESTS





Female patient - Blood Group
Rubella
Toxoplasma




Male Patient bloods must be performed within 30 days of Immunisation Therapy Treatment

Male patient -	Blood Group
HIV
Hepatitis C
Hepatitis B Surface Antigen
Hepatitis B Core Antibody
HTLV 1 and 2
Syphilis


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## Cozy (Jul 17, 2008)

HI Everyone,

Even after reading everyones post, I'm still non the wiser about alot of the results and treatment. I will get my results at the end of next week and then I guess I will need your help to get my head around everything. I've been tested for most things I think.

I hope someone will be able to answer my questions

Dr G said I would have to have Humira and its between £700-£1200 for 2 injections. Is that right - it seems alot of money for 2 injections - and do you only need 2? he said its because my uterine biopsy for NK cells (CD57) came back elevated and the steroids I have been on previously arent strong enough.

he also recommended I had the aqua scan - cant remember what its other name is. Anyone had one?

He also said I would need high dose folic acid, but didnt say which one. Is Folgard the best one to take, or is there another one?

Other than that. I dont know what else I may need until I get my results back.

If I did need LIT, Dr G said that PA only does it once and isnt interested in your other levels and said it might be better to go to Greece. How much does this cost and where in Greece do you go?

On the subject of Dr G's receptionist - I can hardly understand her on the phone and she wasnt very welcoming or chatty when we were there. Dr G himself seems a nice man, though at times it was difficult to understand him as he is quietly spoken and he had the windows open so he got drowned out  a little by traffic noise, though I got jist of what he was saying.

Hope you are all enjoying your weekend and having better weather than here  - its raining

Thanks

Cozy


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## Choice4 (Aug 14, 2008)

Cozy
Don't worry when you get your results things would look a bit clearer
For all immune test, Drugs and treatment they are very expensive, so beware

For humaria ,you get a prescription for the first dose which has 2injection, that you take 2wks apart then after that you retest
You need to shop around for the cost, see link

http://www.fertilityfriends.co.uk/forum/index.php?topic=170027.0

The aqua scan i think is the saline hystero. scan

High dose folic acid is 5mg, you need it on prescription ( also called folguard)

For all on LIT, I provided the link earlier
Here it is
http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.0

Lets wait for yur results then paste it here and we can help you
Goodluck


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## Cozy (Jul 17, 2008)

Thanks Choice,

hopefully with the help from people on this site and Dr Beers book I should be able to get my head round everything.

Do you know if GP's prescribe Folgard or Folgard RX 2.2, as the folic acid quantities vary considerably. If the GP wont prescribe RX then I will buy them off the net.

This is what I read the tablets contain and what you should take.

Folgard: 

Folic Acid: 0.8 mg (800 mcg)
B6: 10 mg
B12: .115 mg (115 mcg)


If you have one MTHFR mutation (these quantities are what's in one Rx Folgard):
Folic Acid: 2.2 mg
B6: 25 mg
B12: 1mg

If you have 2 mutations: (Take 2 RX Folgards)
Folic Acid: 4.4 mg
B6: 50 mg
B12: 2 mg

I think I will wait to see what my blood results show before taking any.

Cozy


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## Cath34 (Oct 14, 2008)

Pipin - I am day 5 of stimms today and my ovaries are killing me, plus I have a sore throat!!!! I'm not sure if this its not good to have a sore throat at this stage, I dont want my immune system to kick in and start fighting something off!

Sarah, I really hope Dr G doesn't spring IVIG on me tomorrow, if he does then I will be hooked up for ages and so wont be able to meet you, but we'll see what happens. I really want it at home but have heard Dr G doesn't allow us to have IVIG with healthcare at home? Anyone else heard this?


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## Choice4 (Aug 14, 2008)

Cath
If your ovaries are killing you, maybe you have a lot of follicles/? overstimulations
If you are having sore throat, may be you need a bit of intralipids or ivig, at this early stage and also latter on!!!
Ask him when you get there and see what he says, if you don't ask , you wouldn't get!!


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## Cath34 (Oct 14, 2008)

Yes Choice I was thinking the same. The trouble is I dont want IVIG there with him as I will be stuck there for 4 hours when I'd rather have it at home. We'll see what he says. I usually get sore ovaries toward the last few days before EC but not at this early stage- day 5 of stimms. All I hope it that the 2 leading follies haven;t gone too big, leaving the rest far behind!! We'll see tomorrow. Its ok to have a hot water bottle during stimms isnt it ladies?


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## Choice4 (Aug 14, 2008)

Yes warm water bottle is ok, not too hot, wrapped in towel
I had that pain in my ovary during my stimulation, a bit more towards the back, my acupunture put a heat pad on, for me
But i was not sure how safe it was in case i was frying my eggs!!!


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## sarahh (May 20, 2006)

Choice   fried eggs, brill!!!  

Cath - hope your sore throat isn't too bad - and your sore ovaries - well lets hope that you have lots of follies all equal size!!  

Looking forward to my poking & proding session tomorrow    Hope I manage to get to the blood lab with DH's blood before the cut off time for sending it off!!  Altho I seem to remember them telling me that they do have an emergency run about 4pm.  

Right, off to tackle a big pile of ironing then off to bed.  

Cath - will txt you in the morning.  Hope you feel a bit better (hope its not swine flu!   ). 

Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
It may be a good idea to ring the TDL lab if you are running later than 2pm, to let them know, you have bloods for usa, and they may delay the courier man!!!, who picks them up


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## Cath34 (Oct 14, 2008)

Thanks Choice and Sarah. I'll speak to you tomorrow Sarah. I'm off to bed too. x


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## superted (Sep 21, 2004)

Ladies

You having been busy chatting good luck for your appointments tomorrow.  Cath hopefully you will be able to have Healthcare at Home I dont see why not if you explain you live in Wales and its a long drive home it would be much more comfortable in your own home.  Are you north or South.

Choice - too scared for a ticker yet waiting for my nuchal and 12 weeks scan this week.

Pinpin - like you I needed humira or rather was told it would help.  Actually had the TB test and then decided against it.  ANother cons I saw for immunes had not presribed me that and said that ivig would work.  So I worked on that provisio as I really was not comfortable with taking it.  I also saw Dr P Armstrong at the Portland for LIT.  Dh and I have one match and we could have gone to Greece.  Was weighing it up but decided for this time I would give it a short with PA and then if not worked would reconsider Greece.  

I also have inherited one MTHR gene and I take 5mg folic acid 50 mg B12 and 20 MG B6.  This was not from Dr G my other immune cons told me about taking this.  Some say you dont need to with one inherited but as I was told I decided for the sake of a couple of extra tabs and high dose folic I would do it.    I hope that has helped you out.  As Choice says for LIT if you do decide to go to PA make sure you book early and get the bloods done early if going on nHS.  You may not be able to get a couple of the male ones covered as we had to use DR G blood form and go to the Doc Lab just along with his office but these results came back within a few days.  NHS remember will take longer and you need to have all the blood results within 30 days of having the LIT.  Also they only do LIT on Tuesdays and Fridays well so they say it also depends on the number of people needing it and they sometimes do it another day.  I had mine on a Thursday but it all depends on the lab.  I would suggest if you do then make sure you ring Millie his sec early to arrange a date so she has it in diary as it can be hectic.  I actually found this the hardest thing to get done just due to the timescale of results etc.  But it saved me quite a bit of money getting most of the bloods on the NHS so it was worth it although a tad stressed.  Had of known what I know now it would have been easier.  Hope that helps a bit.

Anyway girls time for bed.

superted x


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## Cozy (Jul 17, 2008)

Hello ladies,

I have been trying to do some shopping on the net and have found you can only get folgard Rx2.2 by prescription, even from the US, but I came across a website that sells folic acid tablets with Vit b6, B12 and Zinc, its called Homocysteine Formula. 

The tablets contain:

Vitamin B6 - 15mg
Vitamin B12 100 i]g    (sorry cant do correct symbol!)
Folic acid - 400 i]g
Zinc 5mg
Riboflavin 3mg
Betaine 500mg

This appears to be similar to Folgard;

Folgard: 

Folic Acid: 0.8 mg (800 mcg)
B6: 10 mg
B12: .115 mg (115 mcg)


though this tablet folic Acid is not as high strength as folgard, if you are taking a multi vit with it ins which is usually 400 then it works out the same.

According to Dr beers book - MTHFR


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## Cozy (Jul 17, 2008)

SORRY I DIDNT GET TO FINISH THE LAST POST ... WILL TRY AGAIN !!

According to Dr Beers book

"MTHFR is an enzyme in the cells that metabolises and eliminates homocysteine; a toxic amino acid that damages the endothelial cell walls. Levels of homocysteine can increase if there is a deficiency of folate, B6 and/or B12"

So it appears that the above tablet may be a good alternative to either getting high dose folic acid on prescription and taking additional B vits or taking Folgard (but not Folgard RX 2.2). Tablets are £6.50 for 30

The website is www.natures-own.co.uk

Anyway, dont know if anyone is interested, but I thought I would post the details just in case.

Cozy



/links

"Please note, Fertility Friends does not endorse any type of self medication/DIY drugs administering . We ask you to seek advice from you GP/clinic on any aspects when self administering drugs of this nature without professional medical supervision/approval"


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## Choice4 (Aug 14, 2008)

I would be careful about what I buy on the internet
It may be better to go to the gP and get a prescription for high dose folic acid!!


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## Cozy (Jul 17, 2008)

I can only speak for myself but I have never had any problems from buying stuff off the internet and only use sites that have been recommended by Dr's or my medical herbalist. Though I am aware some sites are dodgy and its alledged you get fake drugs.

I am looking for alternatives to a prescription in case my GP wont give me one, they are not very helpful when it comes to IVF stuff  

Cozy


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## s1165 (Jan 2, 2009)

hi

I have been presrcibed high dose folic acid by my consultant on NHS and my DR just repeats it. I an not having any treatment at mo just TTC naturally and saw consultant for tests he prescribed this because of my age and 2 m/cs, all seemed quite easy for them to do. All fine except one immune one which they are just checking.

Good luck to all

x


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## BubbleMac (Apr 15, 2009)

Cath34 ... not sure if you're having stimms with Dr G.  If yes, he put me on a much higher stimms tx than I had with the Lister.  I had ovary discomfort v early on, which was unusual, and - though one follie was growing too fast - all others did fine.  Discomfort stopped more than a week before EC though all follies did well and I even got the most ever.

Hope the appt went well today.

BM x


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## karen (Mar 23, 2002)

Hi all,

Havent been on for a while but had a very frustrating day today. I'm going to see PA last week and they need blood test results from DR G on friday. i'm going in on Thursday and assumed that if I needed to go in earlier Dr G would have said. However after reading on here that all isnt as efficient as was, I thought I'd better check that 24 hours would be ok for the bloods.

I called 3 times this morning to try and find out. Clarissa said she'd speak to Dr G but then told me he was busy and to call back. This kept happening and when i finally spoke to him, he seemed extrememly confused and even asked if I was in the middle of treatment (which I'm not but it was he who told me to come in on thurs and set up the appt with PA for Tuesday 4th). After much confusion he said we needed to come in today for bloods. DH cancelled all his appts and  planned to rush in have bloods and back to work. I told her he would be in by 2:30pm to pick up the form and he's still sat in reception waiting for it (3:30pm!)! Apparently there are lots of other girls in recpetion waiting and talking about the £90 fee - Cath / Sarah is that you? If so my DH is with you and I'm coming in very shortly!

I have to say we are very disillusioned. I cycled with him earlier this year and felt the experience was much less stressful than I'd been used to but it no longer appears to be the case. I believe its a symptom of him becoming too busy and therefore less organised and less personal but DH was ready to cancel all and I've jsut had to calm him down. 

Sorry to rant (esp when you havent heard from me for ages) but as someone else said, FF is an outlet for us and its nice to know I'm not alone in my frustrations!

Karen
x


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## sarahh (May 20, 2006)

Hi Karen, yes, we witnessed your DH getting very annoyed.  

It was total chaos there today.  I had an appt for 1pm for saline hysterography & follow up consult.  I got there just before 1pm having turned up previously at 11.30 to get my blood form to get my LAD repeat done.  Told him I would see him later, he knew I was coming back.  When I got back at 1pm there were 2 other couples in the waiting room and Cath was in with him for her appt (that should have been 12.30 but she went in at 12.45.  

Cath came out and he called one other couple in, already was 15 mins late for my appt - not too bad I thought but I was confused as I knew the procedure was about 30mins and my follow up he said about 30 mins.  So I asked the other couple and they said their appt was 1pm too.  And they wanted immunes done.  

Mr G then came out after seeing first couple and asked me out into the corridor and asked what I was there for!  I said the other couple better go in as they were having immunes done - was already 1.30pm.  They went in and left to get bloods done about 1.45 ish.  I had my follow up then he said he had another new patient and would I mind if he saw her before doing my procedure.  So I waited till about 3.30.  And during that time Karen, your DH came in and asked for form, yes it was me & cath talking!  Carisa seemed to keep walking into Mr G's room but then coming back out with nothing and he was getting more and more irritated !!!  And I was in the room when you called this morning too Karen.  He seems very distracted at times and it doesn't give faith about whether he really remembers who he is talking too.  I just get the feeling he is trying to do too much / fit too much in.  

Anyway, rant over from me.  

Cath, hope you got home ok.  

Saline hysterography went well, no probs found.  Also had mock ET.  

LAD test done, hopefully have results back by end of the wk.  

Hope everyone else ok 

Sarah x



So, a bit of a mix up and a very busy clinic.


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## Cath34 (Oct 14, 2008)

I'm home safe thank you. Yes Karen, we notice your DH getting rather annoyed!. (dont blame him, especially listening to us chatting!!!)
Anyway, I'm soooooooooo tired, off to bed so will post more tomorrow.
Sarah, glad you got home safe to. xx


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## Kazzie40 (Apr 1, 2008)

Hi girls, Cath and Sarah, lovely to meet you today. Hi everyone else I am the other one who was having immunes tested today who was doubled booked with Sarah today at 1pm.  

Glad you both got home safe, we didn't get home until 18.30pm because we never got out of there until about 16:40pm my DH was also getting quite frustrated. His impression is also that they are trying to book too many people in at once which was shown today but also by the fact that the PA said she could squeeze me at any time when I asked her about avialiability of appointments. It was Dr Gorgy who booked my appt last week.

I am praying that I am going to be one of the rare ones where nothing is wrong, but won't hold my breath lol!

Look forward to getting to know everyone  

love Karen xxx


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## twinkle123 (Mar 1, 2008)

Hi everyone.  Had my 1st appointment with Dr Gorgy today.  It was originally supposed to be at 12.00 but Clarissa phoned me on Friday to confirm my 10am appointment!  Quite glad I was earlier as it seems to have been chaos there later on! Really liked him and he explained everything really well (despite the constant phone calls he seemed to be answering!)

Anyway, got my 17 vials of blood taken and will phone back in 2 weeks for results.  Still none the wiser what the results will mean but glad to be moving forward for a change.  We'll still to my 5th IVF at my local clinic though because it's just far too much of a hassle to get it done in London.

In the meantime, I've to organise more blood tests from my doctor and arrange to get a hysterography done locally.

Flew back up to Aberdeen this evening but was delayed for a few hours.  Now feeling exhuasted so think it's about time I went to bed.

Susan
x


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## karen (Mar 23, 2002)

It seems funny to think we are all actually meeting and recognising each other! Nice though. DH wasnt happy at all. I did suspect it may have been you girls in the waiting room when he said what you were talking about!  

He called me and told me he'd gone through the blood tests needed with Dr G and what the cost was and immediately he said he's spoken with Dr G U panicked that we'd been charged £90 - but no it appears that the blood tests were just £125 more than Dr G told us they would be - sigh.

I was in and out the blood place at the speed of light thanks to DH doing all the waiting!

Sarah glad everything went ok though when you finally got seen.

Karen I was passing about 16:40 after having bloods done and saw someone with long blond hair coming out the building. That wasnt you was it? 

I think we should all wear badges when anywhere near the building!  

Hi Susan  and everyone else. 

We're getting so busy on here that we'll need a list soon so we can keep track!  

Am currently trying to think about how on earth I excuse myself from work for a day next tuesday for my LIT. I have an appt at 8:30am for consult and DH blood (more of it!  ) then again at 4pm for the treatment (on the theory that I can go back to work during the middle of the day as I'm lucky or unlucky enough to work in London). I'm starting to think it would be easier though to just avoid the whole day ie be sick or work from home. The irony is that because my boss and I are taking our holidays during august and at different times, the one ONE day he is in the office and I'm not on hols is of course - next tuesday!!!  

Better get some work done now.


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## lalaby123 (Sep 21, 2008)

hello ladies
i have been reading your posts as i am new to IVF and immune testing. 
I am 39 unexplained infertility following a miscarriage 2.5 years ago. Live in Manchester decided its time to have IVF. Went to London last week to see Lister and ARGC. ARGC suggested I test my immune due to having thyroid antibodies and history of infertility given all hormones are optimal. 

I then started reading these posts and am now more confused than ever as its so complicated. It seems if i went with the ARGC then i won't have the choice of intralipids which are much cheaper than IVIG and i think they don't do all the tests that Dr Gorgy does such as LAD (which i have not idea what it is! but soon will after reading Dr Beer's book).

Does anyone know if i can stay with ARGC but do the immune testing with DR Gorgy or do the immune testing with ARGC and do the extra tests at DR Gorgy or will they not be pleased as I guess since he left the ARGC they may not be in good terms.....oh its so complicated and i am only at the beginning!! are you all doing your ivfs with Dr Gorgy as well or elsewhere??

Good luck to you all on your next rounds


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## twinkle123 (Mar 1, 2008)

Lalaby123 - I'm also very new to all this immune testing so don't have much help to offer you with at the moment.  Only had my 1st appointment with Dr Gorgy yesterday.  Just wanted to say that we are doing our 5th IVF with our local clinic again in Aberdeen but immune testing with Dr G.  He seemed happy enough with that and didn't try to persuade us to do it with him at all.
Susan
x


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## lalaby123 (Sep 21, 2008)

Susan-P thanks for your post, good luck with the immune testing with Dr Gorgy, i hope it will make all the difference for you, let us know what the results identify.... i am still undecided who to see its a minefield!! xxx


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## Choice4 (Aug 14, 2008)

Hi Girls
Newbies here, you are welcome!!

I was at Dr gorgy today, sent my bloods for LAD retest, Nkcell, intralipid/ivig supression, awating result!!

Superted, you wanted to know how old Dr Gorgy was he is 54yrs!!!!

I also spoke to him about ivig/ intralipids via healthcare at home, he is happy to prescribe it via them, but the only thing he said is that for the very first infusion, he would like to do it in his clinic to make sure there is no reaction, after that if you wish to use healthcare at home and you live far it can be arranged.
He said he has to be careful  esp. with  intralipids as some people may be allergic to soya, without knowing it and if there is a reaction while at home,  with the nurse,then !!!!.

Also sometimes there is a reaction with IVIG, everyone is different


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## Pinpin (Nov 4, 2008)

Hi girlies,

Superted - thank you for telling me about your decision with humira and LIT. I understand this has worked for you so it certainly is an inspiration for me   Can I ask you what your levels of TNFa and LAD were ?? (you can pm me if you don't want to post your results)

Cath - how is the sore throat and painful ovaries? I hope you're better  

Choice - your fried eggs comment made me chuckle!  Dr G 54 years old!! Well he certainly doesn't look them !! Good luck with your results I   that they all come back within normal range and you can get on with your treatment. You so deserve to get your BFP  

Karen - I hope you have managed to calm your DH down. It sounds like he had a rather frustrating experience   Have you decided what to do about next tuesday then??

Sarahh -    good luck with the LAD results I hope they are positive 

Kazzie - like you i am quite new to Dr G and have only seen him twice and it went well both times and hope to be also one of the ones who have no issues  

Susan - well done with the 17 vials, I hope it wasn't too bad for you. I must admit I struggled with my 17 vials and had to ask the girl to change arms as it was painful  

Lalaby123 - I am also quite new to Dr G and IVF however like you i did my homework before deiciding on who to go for as a clinic/Dr.
My choice on Dr G was mostly down to the fact that 1/ he follows the Dr Beers treatment as much as possible (test and treats LAD with LIT and does intralipids+ivig) and 2/ because he offers all of this in parallel of an IVF cycle somewhere which in my case was what I needed as it is my first NHS cycle.
I saw Dr ******* before I saw Dr G and he was much less thorough with testing and less agressive with his treatment hence I decided to switch to Dr G.

Does anyone know how long it takes to get results of TB test?  I had it done on saturday ad wonder if I could call tomorrow to get my results? I guess I better be prepared to get charge £90 so may want to actually book an appointment so we can go over the plan of action in a bit more detail with actual dates etc..

Pinpin x


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## Pinpin (Nov 4, 2008)

Oh I forgot to ask if anyone had heard about eskimo oil being good to lower TNFa?  One of the lovelies on another thread has kindly mentioned this to me and wondered if anyone knew about it and where I could buy from and dose I should take?
If it's only a supplement I don't mind popping one more tablet each day!  

Pinpin x


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## Choice4 (Aug 14, 2008)

Pinpin

I think it is called eskimo fish oil, try the health food stores
I got mine from whole food, you take 3tablets a day, I don't know if it reduces TNF, but it helps to thin the blood and increase blood flow

TB result should not take a long time as it is done in the Uk, you can phone up to see if your result is back, but if you need Humaria, then you still have to go in for the prescription, 


Cath, I heard your LAD has gone up from 26 to 87, after the LIT,that is so good!!!
Good luck, I am happy for you


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## lalaby123 (Sep 21, 2008)

choice4 good luck with your new tests with Dr G

pinpin i am glad i am not the only one doing immune testing before ivf 

thanks to choice4 and cozy and a few other ladies advice and info here, i am now almost there with a decision.....today i am inclining towards immune testing with Dr G and doing IVF at Care @ Nottingham which is closer to manchester and i can do the actual monitoring in Manch, also cheaper than ARGC and they believe in immune testing

I would however love to get your opinion on whether i should bother with immune testing before having given IVF a chance? I see most people have turned to immune after several IVFs or miscarriages so not sure if i am jumping ahead of myself or doing unnecessary tests....ARGC did suggest i do immune testing however so i guess it is likely i have issues but then how do we know if they tested anyone they wouldn't get some immune issues showing....sorry i am being sceptical ...just want to look at the equation from all angles before going down the immune testing/treatment route.....so let me know what you would do if you were me....test or not test


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## sarahh (May 20, 2006)

Lalaby - I would def do immunes - altho it is costly it is nothing compared to the cost of a whole cycle, not to mention the emotional trauma of it.  I also see you have very sadly suffered a miscarriage before   and that can indicate possible problems I believe.  If I were you I would def get your immunes tested.  If you have a cycle and it fails then you will then think I wish I'd checked.  If you spend the money checking and there are no issues  ( ) then you know that is not the reason for a cycle not working etc.  Anyway, that is my personal opinion.  I would go with Dr G over ARGC.  Prices v. similar but you get personalised service from Dr G, ARGC I just felt like a patient number (ok Dr G getting busier and there are some issues but def better for me than ARGC).  Phew, take a breath!! 

Karen (Kazzie), great to see you posting.  Hope your results show nothing, but at least if they do then you know what the potential problem is.  

Karen - I was prob leaving about 4.40ish as I was in the waiting room chatting to Cath for ages after my appt   but I would say my hair is shoulder length not long.  I was wearing jeans & a brown & white striped shirt with a cream gilet.  

Susan P - glad your appt went well.  You may have been leaving the building just after 11 as I was coming in - saw someone but on their own and I think you had DH with you so prob not you?  

Cath have you started on Clexane now - could you PM me and let me know how much it cost - I am desperately trying to do price comparisons.  Could you let me know how much med was in your £500 boxes too!!!  Are you having Gestone too?? Got that yet??  

Choice - any idea where the contact details for the pharmacies supplying drugs are like Ali in Tamworth??  Can't find them.  Your results will be one day behind mine.  Lets hope that we all have a good response like Cath!  

Right, must go.  Getting really busy on here now!


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## lalaby123 (Sep 21, 2008)

thanks Sarahh for the advice it is most appreciated
can i just ask why you moved to immune testing when you had managed to get pregnant before?? was the immune issue the cause of failure of the first two attempts??
all the best with the next one, i am sure Millie will get her sibling very soon
xxx


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## twinkle123 (Mar 1, 2008)

Lalaby - looking back, if I had known there were further tests out there I could get, I think I would have tried some of them before starting IVF. I know it's easy to say after 4 cycles, but I didn't even know they existed back then.  My clinc annoyingly, don't believe in immune testing.  

Sarah - no, wasn't me you saw.  We were out of the building at about 10.40 on Monday and then headed along the road for our blood tests.  The lady you saw was in the waiting room when we came out of our appointment.  She must have left about 11am because we were still trying to pay by then.  My bank didn't release the £1710 because it was an unusual transaction for me! Carissa had to phone them and then they wanted to speak to me to authorise it.  It took forever!  At least I know that if someone ever got a hold of my card, the bank would question it.

Quite annoyed today because AF is arriving.  Our original plan was to start our next IVF cycle with this one so I should ideally be phoning my local clinic today to get started.  Will now have to wait until I get my blood tests back and have a hysteroscopy. Just seems a waste of a month.  

Love to everyone
Susan
x


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## lalaby123 (Sep 21, 2008)

thanks Susan-p all your opinions and advice count as you have been there and done that


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## Pinpin (Nov 4, 2008)

Lalaby123 - I think you will have guessed my view on this! I definitely believe that anyone with unexplained infertility should be tested for immune issues. I was unexplained and stubborn and determined   and I would not accept unexplained as an answer for my infertility so I did my research and learnt about immunes. Both DH and i agreed we should get tested before having IVF as in case there were immune issues having IVF with no immune treatment would be exactly like putting butter in an oven to refrigerate it !

I'm glad we did the test and I am very shocked at how many markers have been identified as a problem and we are going to get IVIG intralipids and LIt but probably draw the line at humira.

This is my honest opinion - I think you should get the test done.

Good luck whatever you decide

Pinpin x


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## Choice4 (Aug 14, 2008)

Sarah
Is this the link you are looking for, to get cheap drugs

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


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## karen (Mar 23, 2002)

sarah will pm you re drugs

x


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## lalaby123 (Sep 21, 2008)

ok ladies AF arrives one day early today :-( i was really secretly hoping I would miraculously be pregnant this month so that it could be my husband's 40th bday present (ovulation day was on his bday!) but oh no no such joy and a day early too grrrrrrrrrrrrrrrrr

so i have booked my appointment with Dr Gorgy next Wednesday, both me and DH going down to London to have all necessary tests done. I am sure i will have horrendous results. Can't wait for doctor beer's book to arrive so i can read it before going down

any tips for the appointment next week most welcome
xxx


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## super9 (Aug 5, 2008)

Ladies

Re your Sharps box/bin . 

I have just found out that many London councils ( perhaps other councils too) should collect it free of charge. My GP gave me a number to ring for my local council and they collected  the box  free of charge and supplied a new replacement box .


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## Cozy (Jul 17, 2008)

Hello ladies,

I am hoping you will be able to help me decipher my test results and give me some indication as to what treatment lies ahead for me.....


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## Cozy (Jul 17, 2008)

Hello ladies,

I am hoping you will be able to help me decipher my test results and give me some indication as to what treatment lies ahead for me and any questions I should be asking Dr Gorgy

NK ASSAY (% KILLED) PANEL

50:1                                25.1
25:1                                18.5
12.5:1                              16.3 
IgG conc 12.5 50.1             18.7
IgG conc 12.5 25:1             15.4
IgG conc 6.25 50:1             18.6
IgG conc 6.25 25:1             14.0 

% CD3                              91.4
% CD19                              2.3 
% CD56                              5.5
% of CD19+cells, CD5+       47.8


NK assay w/Intralipid

50:1 w/Intralipid  1.5mg/ml      18.4
25:1 w/Intralipid  1.5 mg/ml     14.5


LEUKOCYTE ANTIBODY DETECTION

Flowcytometry                     Negative
(Tcells) IgM+                      1.6
(Tcells) IgG+                      10.2  
(Bcells) IgM+                      23.0
(Bcells) IgG+                      24.9 

Factor II Mutation prothrombin Factor II G20210A              Negative

Factor V (leiden)   Factor V G1691A mutation                    Negative

MTHFR gene mutation - MTHFR C677T mutation                 Negative

TH1:TH2 INTRACELLULAR CYTOKINE RATIOS

TNF -a:IL-10 (CD3-CD4+)                                               18.1
IFN-g:IL-10 (CD3-CD4+)                                                  6.7 


DQ Alpha Genotype

Me - 0301,0501
DH - 0101,0303



Thank you very much for your help, its much appreciated

Cozy


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## lalaby123 (Sep 21, 2008)

hi Cozy gosh you must be dieing to know what these mean!!!
how did you get the results? i guess you get them before speaking to Dr Gorgy
it must be so nerve wracking....i am being tested next Wednesday and will be posting my results here in a few weeks like you searching for answering
i hope your results are not too bad and can be treated easily.....keeping everything crossed for you xxxxxxxxxx


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## omni (Dec 4, 2006)

Hi Cozy,

This is just to give you an idea. Dr Gorgy will go into detail. The good news is that you don't seem to have a problem with TNFa which means you won't have to have humira. 

You do, however, have raised NK cells which will require IVIg or intralipids. This is usually supplemented with steroids (such as prednisolone or dexamethasone). The test results show that your NK cells would be lowered by IVIg BUT did you not do the test for intralipids? Intralipids are much cheaper than IVIg but you need to know whether they work at all for you (e.g., they do not work at all for me but for others they work better than IVIg - so very important to test). Do none of your test results show the word intralipid in the results? If not ask Dr Gorgy about this. 

Also your LAD results are a bit low. The most important result is the "(Bcells) IgG+" This should be over 30 (but ideally over 50). Yours is 24.9 so you would benefit from LIT treatment. LIT not only raises your LAD numbers (the higher the better) but also tends to lower NK cell 50:1 (the lower the better - should be under 15 - yours is currently 25.1). 

You do not seem to have blood clotting problem from these results but you may be put on clexane as an immune modulator (it tends to work together with other meds in balancing your immune system).

Hope this helps by giving you a rough idea. Good luck!

Omni


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## Cozy (Jul 17, 2008)

Thanks Omni,

these are my intralipid test results

NK assay w/Intralipid

50:1 w/Intralipid  1.5mg/ml      18.4
25:1 w/Intralipid  1.5 mg/ml    14.5


Dr G told me I would have to have Humira as I have had a uterine biopsy for uNK cells and they came back at 8.3% and the upper limit is 5%, he said these were CD57 cells and dont respond well to steroids. Luckily, like you say, i dont have a TNfa problem, which is one less thing to worry about!

On previous cycles I have had steroids, either Ritodrine, Dexamethasone or Prednisolone, asprin and Clexane, so I will be on something. I read that Dr Beer prefers to use Dexamethasone but alot of clinics are now using Prednisolone.

Did you have LIT? Did you go to Greece? Dr G seems to prefer patients going there rather than to PA in London.

What do you think would be better for me IVIg or Intralipids? 

Thank you for replying. I have a telephone consultation with Dr G tomorrow, but its nice to have a bit of an idea what he is talking about  

Cozy


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## omni (Dec 4, 2006)

Well. Lucky you - the results show that intralipids should work just as well as IVIg for you in lowering NK cells in the blood. IVIg is more proven in working together with humira/LIT but Dr Gorgy seems to be getting good results with intralipids with certain patients and intralipids are so much cheaper. 

Now NKu's are a different matter. Humira is indeed used to lower them. I did not realise you had a biopsy but good that you did and are aware of this problem (everyone is different - I had humira for TNFa but my biopsy for CD57 was normal).

I went to Greece for LIT. There is a thread about it on the immune board with lots of info.

Ritodrine is to relax your uterus after transfer (it is not a steroid). Ask Dr Gorgy what is best for your particular problems - CD57 etc - Is it pred or dex? - sometimes people start off with dex and change to pred after conception. As I understand it dex might help with egg quality and pred is less likely to cross the placenta. But that is just a couple of factors to take into account. 

Omni


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## Cozy (Jul 17, 2008)

Thanks alot Omni thats really helpful. I'll see what Dr Gorgy has to say tomorrow aswell.

Its a shame all this treatment costs so much money, though it will be money well spent if it helps  


Cozy


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## sarahh (May 20, 2006)

Hi all,  I'm feeling chuffed with myself as managed to get an NHS prescription for 6wks Clexane, Gestone, some Cyclogest & Prednisolone.  I was gobsmacked when the GP said ok I'll prescribe them for you as they are supporting drugs not actually drugs for the ivf itself.  He would not prescribe the stimming drugs but hey, we'll take what we can get eh girls   

Cozy - think Omni has summarised your issues tbh.  Your CD 19 / 5+ is raised I think so you are likely to have Gestone for that (can't remember if Omni said that too, I expect so!).  

Off to tot up my costs so far   

Sarah x


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## Cath34 (Oct 14, 2008)

Sarah, well done you on getting the drugs, every little helps 

My scan today was local and I emailed the results to Dr G. I have 15 follies on day 8 and their size ranges from 8.6 to 19!!!! My oestrogen levels are 8733 on day 8 of stimms and he says this is high and has been all along. He reduced my Merionel from 300iu to 150iu since Mon and he wants to keep me on this dosage (which doesn't seem much compared with previous cycles) However I am confused as half of my follies need to grow and catch up but he has lowered my dosage?? Another scan on Fri and EC is meant to be MON? We'll see. 
I'm scared.


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## Choice4 (Aug 14, 2008)

Cath
Yeh yeh!!!, 15 follicles, that is good, You may have some to freeze, I hope you are doing ICSI with the sperm, it helps to get more fertlized( don't check the costt, do icsi)your estrogen is high, but as you have your dose reduced thats good, the follicles grow slowly every day, this is the time for them to start maturing.
It is the quality that matters now, you don't need any higher dose of meds
You are doing so well.
Good luck

Sarah
Yeh yeh for getting those mes on NHS, that is wonderful

Cozy
Omni has said it all
So in summary you need LIT, iVIG/.Intralipids, steriods, clexaine, Humaria, Asprin!!!
Dr Gorgy would explain, when and how to take them

See link for LAD
http://www.fertilityfriends.co.uk/forum/index.php?topic=95742.0


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## Pinpin (Nov 4, 2008)

Hi everyone,

Cath - how amazing 15 follies ! I bet you can't wait to get on with your EC now   Don't be scared it seems that you are in good hands.

Sarahh - well doen with the NHS prescription that's given me the inspiration to try the same. Don't ask.. don't get!

Cozy - it would appear that your results give you an explanation as to why it hasn't worked so far so that's good news and the even better news is that it can be treated  

Lalaby123 - not long now until you get yours  

As for me I asked Carisa to fax me my results of TB today and it is negative so i guess it means that in theory i could take Humira but I am still very undecided about it. I just don't know what to do. This is our first IVf and part of me thinks that I'd like to try with just IVIG/ intralipids and LIT (plus clexane of course) and hope that this works but part of me is dreading that it might not work as my TNFa are quite high (50.4). Please help me decide!

Pinpin x


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## Choice4 (Aug 14, 2008)

Hi Girl
I would like to do a little comparison of Dr Gorgy vs ARGC
For the Newbies visiting this link and not sure which clinic to use.

Dr Gorgy used to work at ARGC, before he set up his clinic which is getting quite busy now!!, and does not mind seeing patients who have been to ARGC

The differences are:
1.ARGC do all the cycling and treatment in the same place, so have a statistics record to show as they have their own lab.
while Dr Gorgy do everything in his office, but uses LWC, or CRM for egg collection and ET but does not have his own lab, uses the lab from the above hospitals which are quite good, but you would not see Dr Gorgy's statistics.

2. ARGC's waiting list is longer about 4-6wks, you may get in if there is cancelation, but Dr Gorgy has no waiting list, you can see him within a week

3.Dr Gorgy does intralipids and IVIG, intralipids is now replacing IVIG in the uSA, but ARGC only do IVIG. ( he can now test if you respond better to intralipid or IVIG)

4.ARGC don't do LAD, but Dr BEER and DR Gorgy are quite hot on it
LAD if negative, you would need LIT ( by Dr Armstrong or Greece).

5. Dr Gorgy also uses Ultrasound guided during embryo transfer, but ARGC doesnot,
Althogh i heard only Dr T does the transfer in ARGC, so i guess he knws where to put them embs. ( U/S guided transfer is used in USA in all clinics)

6. I think ARGC wants you to do go to the clinic almost every day for blood test and monitoring. But with Dr Gorgy, you can send the bloods by post to the lab, or use your local lab, you only need to come in if he has to do something

7.Dr Gorgy is happy to do your immune tests and treatment, even if you are cycling in another clininc or if you want to cycle with him. But with ARGC you need to do the cycle and immune with them

They both get good results as they are treating for immune problems and use, Humaria, steriods, clexaine, Asprin,Ivig

But Dr Gorgy also uses intralipds and also would advice LIT, if LAD is negative

Other useful tips!!
8.Most clinics in Uk don't believe in immune treatment, if you have had M/C or failed IVF, then you have to be your own Dr, don't be used as a guinea pig!! and keep trying!!or bad luck!!
Follow your mind, do your home reseach and immune tests and treatment if needed.
You can still remain at your clinic. You never know if it works this time,then you can prove them wrong.!!
Also get the book "Is your body baby friendly" by Alan Beer from Amazon
( it is your immune bible), it becomes more understandable as time goes on!!

9. You can get your prescriptions from Dr Gorgy such as Clexaine, steriods, gestone, cylogest, metformin, thyroxine , even paracetamol and antibiotics, then take it to your Gp, put on your sympathetic face!!, and get them to write it on NHS prescription for you.
With that you apply for NHS preprescription certificate (PPC), you can get the form from boots or apply online
You ay £28 ( for 3months) and you get all your prescriptions free as many as you need for 3months 
https://www.ppa.org.uk/ppa/ppcdd/patient.do

I hope this would help some people to make up their mind, if any one has anything else to add to this list feel free!!


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## Cath34 (Oct 14, 2008)

Well done Choice, that is great for newbies to decide but I think its pretty clear cut!!

Well thanks for your positive comments. I wasn't sure if lowering the drugs would make my follies grow enough by Mon, thats what was worrying me but I know you are right, they need to grow slowly and steadily. He did say after 1st scan I was going too fast and he wanted to slow me down so I guess he is the expert!!!
I'm off to get my E2 level checked again at my local hosp which is great as they rig him with result. Ive had it eveyday this week   He's monitoring me well and it saves me staying in London on my own just for bloods!!
I go back tomorrow for final scan(supposed to be EC Mon??) He may want to scan me again Sat, not sure yet. All I hope is that they all contain and egg and they are mature for fertilization.
Choice with Dr G you have to pay for ICSI and they decide on the day but I agree with you, my last cycle was ICSI due to DH septaceamia etc.... and sperm was low and I had 6 blasts which was my best ever so fingers crossed!!!

I hope everyone else is doing ok. Sarah when will you ring for your LAD? He didn't charge me for telling me mine so go for it ring up 
I got my pred, clexane and gestone from GP shhhhh, not supposed to give it out are they!!! It all helps though.
xx


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## Choice4 (Aug 14, 2008)

Cath
I am happy Dr G, is taking good care of you, and monitoring you closely,
Just insist on icsi, in usa they use it all the time as you get more embs to fertlize, goodluck for monday, i would see him on tuesday for scan re lining check and to discuss LAD results,
I forgot did you use donor LIT?
Have you had your ivig yet
You are doing so well


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## Cath34 (Oct 14, 2008)

Thanks Choice for saying I am doing well, I really dont know anymore and dont want to get my hopes up too much.
Yes I had donor LIT
I had 1 IVIG with him on Mon and I'm sure another tomorrow (fri)
Iwill tell ICSI all the way, I want good fertilization  
BEST OF LUCK for your LAD and scan. x


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## Choice4 (Aug 14, 2008)

Cath
so we may have had the same donor, i hope me LAD comes up too.

I know you don't want to raise your hopes, but positive thinking is better than negative
so well done sis!!!


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## Cath34 (Oct 14, 2008)

Exactly what I was thinking. Ive got my fingers crossed for you. x


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## lalaby123 (Sep 21, 2008)

Hi ladies

I know some of you have taken part in my mini survey but if you haven't can you please list your main immune issues on this link http://www.fertilityfriends.co.uk/forum/index.php?topic=203422

I am trying to see what the most common immune issues are. I wish we knew if others had these issues or if they are reserved for us lucky lot who can't get pregnant....


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## sarahh (May 20, 2006)

Choice & Cath - I told you the donor looked good      

Cath, great news about 15 follies - hope they are all full of lovely healthy eggs!  I'm phoning tomorrow hoping results are back and are good.  I'm bricking it (technical term  ).  Have you started the Gestone now Cath? Have you used Clexane before?  I haven't used either and I'm really scared about them.  Everyone seems to say Clexane seems to bruise loads and Gestone is just a pain in the   quite literally - but doesn't DH have to do them - my DH has no clue and will be terrified    Have you been on fostimon at all or is that box full going back to Dr G?  

Can anyone help me about where to get needles for the Gestone?  Apparently they don't come with the Gestone & when I asked the GP they said they can't prescribe needles and when I asked the pharmacy they said they only do insulin needles not Deep IM needles.  Any ideas?  Does Dr G have these? 

Pinpin - I have high TNF alpha (54.3) and am not taking Humira but only because I've had cancer before so don't want to risk Humira as been told not to take it with my history.  When you hoping to cycle? You doing tx with Dr G?  I'm hoping to start stimms over next few weeks.  

Sarah x


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## twinkle123 (Mar 1, 2008)

Hi everyone.  Having a mad panic about everything today  
I've got about 10 days to wait until I get my 1st lot of blood tests back from Dr G. Can't make up my mind if I want him to find anything because that will mean more drugs, more money and time in London which is just not practical being so far away.  On the other hand, if there is something then at least it's a step in the right direction.

Just generally having a panicky day.  

I've to organise karyotyping tests with my GP but forgot to ask if it is both me and DH who need these. Any ideas?  

I've also to get a hysteroscopy.  Do I definitely have to have this done before I get any further with Dr G?  

Just so confused about everything just now  

Love to everyone
Susan
x


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## Cath34 (Oct 14, 2008)

Susan P. Hi I think you and your DH were in the waiting room on Mon were you?
Anyway you definately need karotyping for both you and DH as I had to get my DH done as I had already had mine. Either one of you could be carrying a dodgy gene. 

I would get a hysteroscopy done 1st but you could have it done there?? With his partner Dr Eskander?

Sarah, lmao about the donor!! 
Ive started clexane 20mg twice a day and then onto 60mg after EC
Gestone doesn't start until after EC as this is progesterone and that doesn't kick in until second half of our cycle. Re: the needles, you need to use the lovely large green ones which you use to draw up the stimms drugs. Difference being you stab your   with them aswell!!! You must make sure you jab in the top part so split each cheek into 4 and make sure you jab in the top outside area if this makes sense? Thats what my last clinic showed me anyway. It should be intramuscular and you can do it yourself my just turning slightly and jab yourself!! ie top right and top left of bum. Dr G will give you as many needles injection kits as you need.

I really hope you get really good results, just dont ring at 12.30 during my appointment/scan!!!!!   just kidding Sarah!
Let me know how it goes.
Ive been reduced down further tonight to 75iu?? Im worried that they wont have grown enough for EC Fri but we'll soon see.
Night night evryone, 6am start for me in the morning  xx


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## twinkle123 (Mar 1, 2008)

Thanks for the advice Cath.  Keeping my fingers crossed for you that your follies grow for EC.    

Need some advice from those of you who have had a hysteroscopy.  Cath suggested I have it done with Dr Eskander but that would mean another journey down to London (and lots more money!)  My main question is, how did everyone feel after they had it done?  I don't mind travelling but wouldn't want to be flying back up to Aberdeen if I wasn't feeling great.  

Any advice?
Thanks
Susan
x


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## Cath34 (Oct 14, 2008)

Susan, Ive had one done but it was the same time as a laparoscopy and the it was that that gave me the pain not the hysto and there are quite a few people on other threads who have done this only and been fine. You dont have to go to London of course you can get in on NHS but I was just thinking of the wait time and possibly having all of your notes together but I guess the travel and the cost would be too much. Do you have anyone locally who is known for being good at these procedures? Ask your GP?
Best of Luck x


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## Pinpin (Nov 4, 2008)

Hi girls

Sarahh - thanks for your reply. Was Dr G confident he could bring your TNFa level of 54.3 down to normal levels using intralipids/Ivig? Did you ask what it meant in case the level doesn't come within normal range? Would it be as high a chance to get a BFP then? Sorry to ask so many questions I'm trying to make a decision about this humira business and it's driving me 

I am doing the immune treatment with Dr G whist doing my IVF cycle on the NHS (Queen Mary/The Bridge). I'm starting stimms end of september. Do you think you will be starting before that?

I called Dr G's office yesterday and it was a different secretary as she had a very different accent to Carisa. I booked an appointment for the 10/08 to agree on our plan of action. In any case by then I would only have enough time to do 1 month of humira not 2 so I'll see what Dr G suggests.

Have a nice day everyone


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## LHR72 (Jan 6, 2008)

hi ladies,

I have an appointment on monday with Dr Gorgy in London to discuss doing level 2 immune testing (am waiting full results for level 1 tests from my nhs clinic in manchester). i know some of you have seen him - do you have any top tips on what questions to ask? I am going because i tested positive for anti-cardiolipin antibodies and thought it worth knowing if i have any other immune disorders before embarking on fresh ivf round. 

Louise


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## lalaby123 (Sep 21, 2008)

hi ladies
I also am supposed to see Dr Gorgy next week but i am having second thoughts as I am still getting over a flu and I wonder if that would affect my blood test results.....I called his secretary to ask and she put me straight through to him...he had me on hold while talking to another lady then while talking to me took another call so it was all a bit weird but luckily i had already read on here that he does that so i wasn't too put off....anyway he didn't really give me a proper answer so I think i will postpone for following week to be on the safe side....if anyone knows anything please share....i just thought my immune might be on overdrive because of fighting the flu.....also if anyones got any tips on what questions to ask as??

by the way Dr Beer's book arrived yesterday and I read the whole thing in one day and needless to say I thought it was great and it made sense of so many of my strange symptoms which wouldn't have meant anything to anyone else but all mean something from the immune stance....I can't wait to be tested and I already know i will have raised NK cells and a host of other issues. Just hope they are not severe as can't afford multiple IVIg. 

I went to see a gyno today to arrange for a laparoscopy to check for any scarring around my tubes, needless to say he didn't believe in immune testing and therapy but I wasn't at all dissuaded and I hope i can show him the outcome of my immune testing and therapy one day.


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## lalaby123 (Sep 21, 2008)

one more question girls
how long do the Chicago tests take to come back to Dr Gorgy??
thankxx


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## Cozy (Jul 17, 2008)

Hi Lalababy,

Mine took 8 days, though he did tell me 10. So I would say about 8-10 days.

I think you will know what questions to ask when you get there. he will tell you what he thinks you need to do and then the questions will come from that. Once you have your results, I think that is the time to have your questions at the ready.

Each time I have spoken to him he has had at least one other conversation going on either in the background or on the phone and usually both !

Hope you feel better soon

Cozy


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## Cozy (Jul 17, 2008)

LHR72,

I had also tested positive for anti cardiolipin before I went to see Dr Gorgy. When I was 1st tested it was 17, when I was retested it was 20 and my test with Dr Gorgy was 23, so its gradually going up and this is over a period of about 3 months.

I think once you have the test results back from your previous tests and you go and see him he will tell you what he thinks you need to have tested and once those results are back you will know what questions you need to ask.

Do you have the book "is your body baby friendly" by Dr Alan Beer? that is a very good book to read before you go and your questions might come from what you have read.

I went with no questions in mind but had some while I was speaking to him and I had quite a few once my results were back

You are wise to be tested before you emabark on IVF, I had tests done at ARGC before my 1st cycle and that helped me a little, but the tests with Dr G are more comprehensive than the ones I had done previously I wish I'd known about these tests earlier

Cozy


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## lalaby123 (Sep 21, 2008)

thanks cozy  have to say he does seem a bit odd and aloof so far ....hopefully better once I meet him....

one more question, should I get some immune tests done through the GP before going to see Dr Gorgy or will he tell me which ones to do through GP and which ones to do privately with him? suddenly i am in a mad rush, i feel i have wasted 2.5 years and now don't want to waste anymore time trying aimlessly......also have NHS funded first IVF round coming up soon so want to have been 'immune checked' and possibly treated before that....


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## Cozy (Jul 17, 2008)

Lalaby,

if your GP is anything like mine, I wouldnt bother getting any tests done there I would just go to see Dr G and he will do them all. I dont bother with the NHS at all if I can help it, they drive me mad. Though I'm sure I would be very thankful of them if I was in accident or needed treatment in an emergency.

Its up to you, but as you are going to see DR G next week you might aswell leave it until the, your results will be back quicker and you know you will have been tested for the correct things..

Cozy


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## twinkle123 (Mar 1, 2008)

Lalaby - I know what you mean trying to rush through getting everything done.  We should technically be starting our next IVF now but have to wait until we get blood test results back.  Want to start as soon as possible again. 

I didn't get ask my GP about getting any bloods done with him.  Dr G has done them all except karotyping which he told us to ask our GP to do.  He said it would be much cheaper that way.  He didn't mention my GP doing any other tests so f anything, karotyping might be the only one to get done.

Still none the wiser what's going on and what I'm being tested for so sorry I'm not much help!  
Susan
x


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## lalaby123 (Sep 21, 2008)

thanks girls yes think will wait and see what Dr G says....its my own fault for not taking action any earlier but I just didn't want to give up on myself but now I KNOW it won't happen if i continue along the old route......so immunotherapy here I come

i am now also able to speak the same language as all you girls with your LITs and LADs and HLAs, having read Dr Beer's book the anagrams are not so chinese any more....more like french...


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## sarahh (May 20, 2006)

Hi girls.  Had my repeat LAD result back today - only gone up to 47.  I'm so annoyed!   Stupid body! Its meant to be over 50 so result was boderline but Dr G wants me to have another booster LIT.  That would be fine but when he phoned Dr Armstrong's secretary today they now can't do it until 25 Aug!  Which means putting cycle on hold now.  

Also had strange bleeding. Cycle day 19 today, day 18 of taking cilest, saline hysterography on Monday.  Had bit of brown stuff last few days and fresh red this morning so I phoned him thinking "he's going to ask me in for a scan" and guess what - he did!  Which again would be fine except the car was all packed up, DD asleep and was ready to travel to my parents house in the Cotswolds for the weekend.  So slight detour to local station & off to London for me while DH & DD came to my parents!!!!!!  How confusing?  

Anyway, I didn't come away much clearer as to whether its my period (but I certainly came away a bit lighter in the wallet dept  ) or not so not sure where I am but Dr G said stop the Cilest and start using Buserelin 0.2ml.  Back next Friday for a scan, bloods & maybe hopefully start stimms.  

Choice - hope your results are better.  Are you phoning tomorrow for them?    If I go for LIT with Dr A on 25 Aug that could be just after ET - do you think that timing is ok??  I know Dr A prefers to do it before EC but he doesn't have any appts free.  Dr G got quite annoyed and phoned the Doctors Laboratory to try to persuade them to help him out with LIT whilst I was there but he needs to get hold of a "protocol" before they can do anything??    Choice, did your DH get bloods for LIT with PA on NHS?? 

Had major panic tonight trying to remember how to inject the buserelin (3 yrs since last tx) but I got there in the end but I'm dreading using the big green needles for Clexane & Gestone.  Never used them before and always used an auto injector.  Why oh why is everything so complicated?  

I sincerely hope everyone else had a better day than me.... 
Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
I posted on the LIT thread for you
The good news is that you LAD is closer to 50, but my honest advice is to go to grecee, asap and use Donir LIt as you have used your DH's blood twice, you need to boost your antibodies with something different.

You may be able to get it before 25th Aug, ask Dr Gorgy to arrange it for you.

Yes my DH had all his blood tests on the NHS, but it take 1-2wks to come back


Below are the LIT blood tests required by Dr Armstrong


LIT BLOOD TESTS

Female patient - Blood Group
Rubella
Toxoplasma




Male Patient bloods must be performed within 30 days of Immunisation Therapy Treatment

Male patient -	Blood Group
HIV
Hepatitis C
Hepatitis B Surface Antigen
Hepatitis B Core Antibody
HTLV 1 and 2
Syphilis


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## super9 (Aug 5, 2008)

Sarah and others 

You don't need to use the green needles for the gestone injections. Whilst I was at the LWC, they very kindly gave me syringes, green needles, blue needles and a sharps box. The nurses taught us how to give the gestone injection and specifically made it clear that the blue needles are much better (size 0.6 x 25mm) and should be used to inject gestone in to the muscle. The green needles can be used to draw the gestone into the syringe and then to inject you can use the blue needles, which are smaller than the green needles and don't hurt as much. 

As for clexane I got Fazeley pharmacy to order the ones with the smallest needle tips- so they don't hurt and you don't mix any solution it comes in injection form.


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## karen (Mar 23, 2002)

Sarah - Super is right, clexane comes in pre filled shringes with normal sized needles - it does give you bruises. Gestone I use the blue needles or green needles which aren't as big as the drawing up needles I dont think.

Choice when I was in on thurs I was still bleeding and he asked me if I wanted a procedure to "Suck blood out" and scratch the lining (sorry TMI) he said they do it in usa and one of his girls asked for it. I assumed that must be you? It was like a smear. What was it? It cost £150 he said some believe it helps implantation.?

x


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## Sheldon (Jan 10, 2008)

Can I drop in? How long does it take to get an appointment with Dr G?

Sheldon


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## twinkle123 (Mar 1, 2008)

Sheldon - it didn't take me long at all to get an appointment.  I phoned on a Thursday and he offered me an appointment the next day! Wasn't practical though as I had to organise a flight and hotel.  He was away the next week, I was on holiday the following week so I got one during the 3rd week.

I expected a long waiting list but was pleasantly surprised.  
Susan
x


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## sarahh (May 20, 2006)

Sheldon - appts are quite quick but he is extremely busy at the mo and someone told me on Friday that he is going to start a waiting list but I bet you'd get in within a few weeks max.  

Karen - mmm, that procedure sounds nice!!  Where abouts in your cycle are you?  Did you have LIT this week with PA?  Could you PM me the total cost with DH blood tests as well, I'd be really grateful. 

Choice - thanks for your words of wisdom, I kind of thought that myself but when I said that to Dr G he said not necessary to have donor LIT as my body has responded to husband blood.  Really don't know what to do for the best.  I can't believe I might have to go out there again!  Oh decisions decisions.  

Sarah x


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## omni (Dec 4, 2006)

Sorry Sarah, I don't know when the next LIT is scheduled. Perhaps Dr G might know or you could email Dr T to get a quick answer (yeah right! )

Karen, I did an endometrial biopsy in Czech Republic at Reprofit clinic based on an Israeli study a month before my last IVF cycle (they have close collaboration with the Israeli clinic who pioneered this as a treatment). I mentioned it to Dr G and although he had not heard of the Israeli study, he was interested in the theory - i.e., local injury to uterus improving implantation rates.

A hysteroscopy and one which "scratches the lining" would be based on the same principle I guess. However, my endometrial biopsy was carried out on day 21 (i.e., well after period finished - so no blood to suck ).

Here is a couple of links concerning the Israeli method. As a patient (as opposed to a professional) you can get a full copy of the journal article by email for a small fee. I don't know what they do in America but I guess it is based on the Israeli study (Having said that, I know that Dr Sher does not agree with the theory).

http://linkinghub.elsevier.com/retrieve/pii/S0015028203003455

http://www.haaretz.com/hasen/pages/ShArt.jhtml?itemNo=717564&contrassID=2&subContrassID=14&sbSubContrassID=0

Omni

/links


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## Choice4 (Aug 14, 2008)

Karen
Yes I was the one that had my lining scratch!!, was not fun at all!!
I heard it helps it to respond to the drugs and may help implantation, ( i heard of the isreal study) but I have lining problems so anything that would !!

Sarah, I know you responded to DH's LIt but you need a bigger booster, try and PM beattie on the LIT thread.she did with Dh at PA, then went to greece for donor and it worked
I think donor LIT would bring your level quite high up, but please do what you feel comfortable with, follow your mind!!

Sheldon if you ring Dr G's sec on monday you should get appt, this week

Omni did you post in the thread set up by lalaby on those that got positive after immune, it would be nice if you do, as to encourage others that immune treatment actually works
see link below
http://www.fertilityfriends.co.uk/forum/index.php?topic=203422


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## karen (Mar 23, 2002)

Omni , Choice - thanks!


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## lalaby123 (Sep 21, 2008)

ladies, been reading Dr Beer's book again....i am sure i have CD57 cells in my uterus as have many of the symptoms described like the stabbing pain at time of implantation and also just before period is due...

does Dr G suggest a biopsy to everyone or what are his criteria?? certainly not looking forward to having that confirmed....as it says it is the most difficult thing to treat....

feeling very very anxious about the whole thing and the road that lies ahead.....DH totally not getting it and expecting me to be my usual cheerful self which I can't manage at present :-(


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## lalaby123 (Sep 21, 2008)

ladies does anyone know if there is a thread here about successes with immune therapy?? I really need some hope and positivity to get me through the next couple of weeks....


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## LHR72 (Jan 6, 2008)

hi, thanks for the advice. am visiting friends in london this weekend so haven't had a chance unitl now to check on here. looking forward to seeing Dr g tomorrow. i have got the dr Beer book tho only skimmed it once! hope that the tests i have with Dr G all come back negative, i am doing it for peace of mind really following the positive anti-cardiolipin positive result. 

anyway will check back in here once results are through. good luck everyone with whatever stage you are at in your fertility journey .

PS got my level 1 tests all done thru nhs clinic, but am now fighting to get the results from them! nice consultant has left and nurses say i can't get them by phone or letter, have to wait until request next ivf treatment. ****** isn't it! if only i was rich and could afford private again!

Lou


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## lalaby123 (Sep 21, 2008)

LHR

your GP SHOULD give you a copy of your results. The only results they can't give is HIV results which can only be given when you see a doctor otherwise they should supply you with a copy of any other test result.....

good luck with seeing Dr G tomorrow, pls let us know how it goes as I am anxious about my appointment in a week 

hi to everyone else xxx


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## sarahh (May 20, 2006)

LHR - surely under Data Protection you are entitled to any information held about you including those results.  Maybe you need to ask for a copy of your nhs file for which you may have to pay a small fee??  Just an idea.  Can't imagine why they won't give it to you.  

Choice - I know in my heart that donor is prob the best idea but its just so much money going to Greece again!  Hope your results are brill tomorrow!    When you on for your cycle?  Or are you just waiting for these results?  

Good luck everyone else wherever you are.  I am starting to lose track it is getting quite busy on here!  

Sarah x


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## Sprinkles (Nov 6, 2008)

Evening ladies

Back from hols today but not with good news I'm afraid, was a BFN for us whilst away.  Pretty difficult to handle especially after being convinced that adding the immune drugs this time would do the trick but not so.

So am waiting for hospital to have their committee meeting to see if they will accept me for another fresh cycle and when that would be, clock is ticking as they wont treat me after December, then need to consider what to do regarding immunes, so sorry guys have some questions.

This time did clexane, pred, baby aspirin, eskimo fish oils, high dose folic acid and two lots of intralipids.  So alternatives/additions to look at are humira, ivig and LIT.

Humira am just not inclined to this at all, and ivig not sure how much better this would work versus the intralipids.  So am hopefully going to get levels retested to include the intralipids effect ones.  However question, will having an unsuccessul treatment have increased the NK and TNFa cells?  Or could I get a guage at this stage on whether the 2 intralipids had any effect at all?

Havent done the LAD/DQ alpha test and am suspecting that this is part of the problem, so going to have this done.  Is there a specific day need to book an appointment for to have this?  Do these tests go to america?  How long for results to come back?

Then will read the LIT thread I promise, but as far as I understand 0 or 1 matches with DH can have with PA in London after obtaining the list of blood tests from NHS or through Dr G to take to Dr A.  Alternatively can go twice to greece for donor LIT.

Finally does anyone have or have had the sensation on failed cycles of knowing exactly when things changed.  All 3 cycles I've felt different within a 24 hour period from feeling full of drugs and having symptoms to feeling absolutely nothing at all, nothing.  And on this cycle can actually pin point the time and day of when things changed and am wondering whether this could be the time the NK and TNFa attack, I know this sounds specific but I really notice the difference.  Also on other two attempts lasted a lot longer than this one, didnt even last a week before I knew it was all over which was surprising considering immunes were supposed to help!!

Anyway sorry for negativity not feeling the chirpiest at the moment in fact considering I've just come back off holiday am decidedly p'd off.

Good luck to everyone x


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## Choice4 (Aug 14, 2008)

Hi Girls
Sprinkle 
sorry to hear of your BFN, please take time to heal and get yourself together, it may be a good idea to retest every thing and se what results come back.
Yes LAd/DQ test have to be sent to usa Mon-wed before 12noon.
LIT can be done in greece when using donor, or DH, it is done 4wks apart.
Dr Armstrong only uses DH's blood, but do it only once.

I think sometimes you have to be your own Dr, whenver you feel a change in your body after transfer, then someting is happening, try and up your dose of steriods or go for ivig or intralipid to help fight off the NK cells as they try to attack early sometimes (Omni did it and got a positive)

Lalaby 123 
endo biobsy for CD 57 , needs to be done at day 26 of your cycle CD26. If you want it done Dr G would be happy to do it, but if you have uterine nk cells, it would be probably the same treatment as if you had nk cells in the blood ( which is Ivig, steriods, clexaine?), but sometimes it is good to know what the uterine nk cells are doing( Dr Beer always suggests it)
If you want some positive immune stories, check out the CARE site
Most immune stories are not posted in one place and when girls get positive they are nolonger that active on the board.

http://www.carefertility.com/ivf/viewforum.php?f=11&sid=79c10d90d1b65abe084d55072298e4bf

LHR72
You could write the clinic for a copy of your notes or see if you gp can get a copy of the results, you are entitled to know how your body is doing.

Sarah
It is good to follow your mind, but i think LIT in Greece works ot cheaper than Armstrong ( 600 euro(LIT), flight £150-200 , hotel £80-120 per nite)
Armstrong's LIt is £850 + consultation = !!!!
The only good thing about greece is that it would be donor so a different army to fight the enemy
" In a lay man's term if you have british army to fight the enemy in iraq, and they are not winning, the addidion of greece army would, boost the british army and help fight the same enemy, which may help win the war"

I am not sure when i am cycling all depends on how my lining improves but if all goes well the August

Good luck, all seeing Dr Gorgy this week

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


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## BubbleMac (Apr 15, 2009)

Sweetheart (sprinkles) - so terribly sorry to hear your news particularly after how hard you've tried.  Ironic that now you could do with a holiday ... some time away to get over the bad news.     

Re your ivig vs intrallipids question, a follow up blood test will be able to show you how well the tx worked.  After our recent BFP, we ran the tests and my NKs came back as high as pre-tx.  (I had 1 x ivig and 2 x intrallipids.)  Given the updated Chicago tests, I now know that intrallipids do nothing for me.  I also know that pred is counter-productive; my heart rate goes so high that my temp goes up.  Did you have anything like this?  What did you feel then not feel?  Can't comment on the LIT: we did have the tx though don't know yet whether it changed LAD results.  We do the test in the next couple of weeks.  Have not taken humira.

I've def known for most of my cycles when things have stopped happening.  That said, I've also know when things were happening, when the embryo(s) was starting to implant (though it came to nowt).  I was quite insistent on #4 that something had happened then the LAD confirmed this (as did elevated prolactin: I was producing milk).  The last time was my first with immune tx.  I had a temp almost immediately though I've got inflammatory arthritis so my reaction prob won't be representative of other ladies.  (The temp is my marker for my body fighting alien dna.)

Sending you a big kiss and  ,

BM x


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## BubbleMac (Apr 15, 2009)

Lalaby123 - it's not expansive (and doesn't have oodles of voters) though there is a poll that gives some comfort: http://www.fertilityfriends.co.uk/forum/index.php?topic=192879.0

BM x


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## lalaby123 (Sep 21, 2008)

thanks Bubblemac and Choice for the info  

and so sorry Sprinkles for your BFN  
it must be sooooooo difficult
as for your symptoms disappearing, i have never done IVF but most months on my normal cycle i definitely feel i am pregnant up to 10 days past ovulation and then suddenly it all goes away and i know I am not and lo and behold ALWAYS get my bloody AF on the expected date ....that's why i am convinced i have immune issues and IVF probably won't work for me without immune....anyway don't give up hope as your BFP could just be round the corner with another try but for now give yourself some time off to heal 
sending you lots of hugs


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## twinkle123 (Mar 1, 2008)

Can't stop as I'm just away out but just wanted to say how sorry I am to hear Sprinkles news and to give her a huge cyber hug!     I'm still very new to the whole immune issues so sorry I can't really answer any of the questions you have.  Hopefully someone will have some answers for you. 

Take care of yourself.  Having done 4 IVF cycles (along with 9 IUI, etc) myself I know it doesn't get any easier the more you try.  

Hope everyone is well
Susan
x


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## Donkey (Nov 24, 2007)

Hi
I hope you don't mind me butting in, I've been lurking for a while...Sprinkles, so sorry to read of your bfn   .

Well I’ve finally bitten the bullet and made an appt with Dr Gorgy for immune investigations on Weds afternoon, level 1 tests with my gp showed rasied ana levels.  So this cycle I had pred, clexane, high dose folic acid and aspirin.

DH would be happy to stop IVF now as he feels that it is too much for me and he hates seeing me so upset, but I feel that there is still a little way to go.  We did see Gorgy about 6 months ago and IVIG was too expensive for us but now intralipids are more popular that may help.  I feel really nervous having made the appt and I wish that I could just ignore IF for a long while but I don’t have age on my side.

Is LIT treatment linked to level 3 tests?  Why does it have to be done in Greece? 

Lots of love to you all, have a lovely day

Donkey xx


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## sarahh (May 20, 2006)

Donkey, haven't got much time to post, will write more later but just wanted to warn you that if you are wanting some immune blood tests sent off the appt Weds pm is no good as bloods usually go before 2 and obviously you have to have your appt with Dr G to discuss issues and get the blood taken before this time.  Just thought I would warn you in case you travelling a way to see him.    

Spinkles, so so sorry to hear your news  .  I think you need to repeat the tests to see what your levels are doing now and also check to see how you respond to Intralipids.  LAD / DQ Alpha def a good idea.  

Choice - got your results yet?? 

Sarah x


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## Sprinkles (Nov 6, 2008)

Thank you ladies for all your kind words and hugs it so helps to know that you understand, thanks guys.

Also thanks for the info, will try and make an appointment for next week if I can get the time off, am off to read the LIT thread for more information on that so maybe see some of you there.....

Lots of love x


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## Donkey (Nov 24, 2007)

Thanks sarah, I appreciate that - I'll change my appt.
xx


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## Cath34 (Oct 14, 2008)

Hi everyone, Sprinkles, so very sorry to hear your news.    It doesn't get any easier hun. 
I had EC today and had 15 eggs. I hope they are getting jiggy with it tonight and   for good fertilization tomorrow. I'm feeling very rough today and reallt need to sleep off. I will be back on tomorrow ladies. Sarah, thank you for all of your support hun.   I hope you are feelnig a little clearer  by now. xx


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## Choice4 (Aug 14, 2008)

Cath,
15 eggs, thats wonderful. I pray for wonderful fertilization for you.
Are you going to blast? day 5 transfer, i hope so for you


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## twinkle123 (Mar 1, 2008)

Well done Cath. Excellent news!   Will keep my fingers and toes crossed for you  
Susan
x


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## Sprinkles (Nov 6, 2008)

Choice ~ hi thanks for your advice, I was on 25mg of pred can you take more than that?  Did have intralipids this time but am wondering if that didn’t have an effect and I react better to IVIG but am going to retest to see effects of what I’ve done so far.  Love your war analogy by the way.

Bubblemac ~ no my heart rate and temperature stay normal after the intralipids in fact if anything I felt quite cold after my second one, but that could have been because it made me tired.  With regards to feeling then not feeling, I tend to feel pregnant if that’s possible, or at least feel full of drugs, not just the sore boobs, bloated feeling, but feel lethargic and just slower reacting because of being full of drugs, then I have identifiably different cramps for about half an hour, then a couple of hours later feel nothing, don’t have the full of drugs feeling at all, even though I continue taking them, its very very strange but very noticeable for me.  What are your next steps hun?

Cath ~ 15 that’s great, fingers crossed they do their stuff overnight x


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## Jazz1975 (Mar 19, 2008)

Hi Ladies,

I wonder if I could please join you on this thread.  After 1 m/c and 2 failed IVF/ICSI cycles, I really believe I need investigating for immune issues, so I've booked my initial consultation with Mr Gorgy on the 19th August.

I'm not sure how this is going to work, as I'm lucky enough to still have one NHS tx to use with my current clinic in the North West, and they are vehemently anti immune testing, so I'm not entirely sure whether they'll allow me to use my final NHS cycle if I've got Mr Gorgy involved, but I don't know whether I'm even obliged to tell them. 

Can anyone tell me whether I am entitled to a copy of my NHS file to take along to my appointment with Mr Gorgy, or whether he has to request any information directly?  Finances are an issue, so we'll need to establish exactly what Mr Gorgy thinks we require and then ensure we have appropriate funding prior to undertaking the treatment.  It would be great if we could use the NHS tx in conjunction with any appropriate immune meds from Mr Gorgy, but I'm not sure how it'll all work.  We'll figure it out as we go along I know, but I don't want to waste that final NHS go without our immune tests first.

I'm slowly ploughing my way through Dr Alan Beer's book, and it definitely seems like learning a new language atm, so apologies in advance for my ignorance.  I look forward to chatting with you all though, and wish you all the very best - at all stages of your treatment.

Rach.x


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## Maarias (May 4, 2005)

Hi,
I posted this under immunes but haven't had a response:
did anyone develop dry skin and a rash after coming off dex.? I came off it last week and now have both.

I phoned Dr. G and he doesn't know either. I had ivig drip last week (took ages!) and he said to come back on Monday for another drip  (intralipid) if rash hasn' gone. I am terrified of it being an immune response.

Re. the intralipid test thing, mine said intralipid was as effective as ivig but when I did intralipid my cd19 cd5 went up in the retest, so am now mainly sticking with ivig. I am now convinced about intralipid yet, at the moment just using it inbetween...

Mx


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## lalaby123 (Sep 21, 2008)

Hi Jazz

I am in a similar boat to you in that I am hoping to use Dr Gorgy alongside my first NHS cycle in Manchester.

re your file, yes you are entitled to get a copy but i think they may take some time to get it to you....my friend just went through this process which is why i know

good luck with Dr Gorgy I am seeing him next Monday for first time

Hi to everyone else 
xx


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## Cath34 (Oct 14, 2008)

Hi all,
well I had the call this morning and out of 15, only 7 were mature, but all 7 fertilised so I guess thats good. I'm hoping to go to blast so fingers crossed. I'm feeling sooooo sore today, never felt as bad as this before!!!! I guess its due to the 15 times they had to go in!!!!
Sarah, hows down reg going hun? When are you back there, Fri is it? I'm not sure when we'll venture down. Anyone know of anywhere good and close to stay over as we stayed with friends over the weekend but it was alot of walking, tubing etc..... Also where can we park he car overnight? All suggestions welcome girls. Thanks. x


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## Donkey (Nov 24, 2007)

Aaarrgh!! Just lost my post!  

Jazz and lalaby I'm in the same boat as you.  I go and see Dr G on Tuesday and am hoping to run immune stuff alongside my nhs treatment at Bourn Hall.  Do we have to tell them we are having immune treatment?

Good luck with your appts


Cath congratulations on your fertilisation, hope they go to blasts and you get some frosties.

Donkey xx


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## lalaby123 (Sep 21, 2008)

Cath 7 fertilised sounds great well done your eggs and DH sperm  sending you lots of good luck xxx


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## super9 (Aug 5, 2008)

Cath

Just 5 minutes away from Dr Gorgy there are 2 hotels- Holiday Inn 57-59 Welbeck street or Jury's Clifton Ford Hotel 47 Welbeck street. From both hotels you literally walk to the end of welbeck street and turn right in to New cavendish street and Mr G is on the corner of Wimpole street. I know the area as I work around the corner to Mr G . I think either hotel should be able to arrange parking for you if you stay there, but I don't know their prices.


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## lalaby123 (Sep 21, 2008)

has any of you lovely ladies read this book www.babynexttime.co.uk ?? just wondering if its a good read as she is a immune success story.....

/links


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## twinkle123 (Mar 1, 2008)

Jazz - DH is waiting patiently for me downstairs to go out so better be quick.  Just wanted to say that I'm doing my next IVF cycle with my local clinic and my immunes with Dr G.  My clinic copied all my notes for £50 and I took a copy of them down for Dr G.  They're against immune testing too so I didn't say what I wanted them for. 

Not sure what I'm going to tell my clinic yet about having immune treatment.  I'll figure that out once I get my results from Dr G next week.  I'm in a slightly different situation to you in that I've used up my 3 NHS cycles and am self-funding next time.

Cath - well done. Lots of luck to you    

DH is sighing loudly downstairs waiting for me so better go.  Off out for a Chinese. Yum yum!!!
Susan
x


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## sarahh (May 20, 2006)

Oooh, chinese, yum, my tummy is rumbling loudly at the thought of that!!! 

Cath, well done on your 7 fertilised eggies, carry on dividing you lovely little eggs!   
Sorry didn't get back to your txt this am but took DD to Dr - she has chickenpox (they think!).  Just got her off to bed.  Altho she seems fine at the mo tho its just the thought of staying in for the next 10 days!!!  In this weather !!! 

Well, no I haven't decided what to do, stupidly I thought that if I sent Dr T an email, txt and left a voice message then he might get back to me asap as requested .... but no such luck.    Soni is going out again on 11th Aug so I am tempted to go on my own as she has said that I can travel to/from the clinic with her and DH (altho I feel a bit stupid doing so but its all a bit strange in a foreign country and I really wasn't paying attention when we came back with you and Choice as I felt so sick!!!!)  DH really doesn't want me to go on my own but its at least £250 for one flight now as its so late so it just seems like a complete waste of money to me.    Phew, expect you need to go back to bed now after reading that long post!!!!!  Are the embies counted as Day 1 today - i.e. Day 5 = Saturday transfer?   

Right, must go to do lots of jobs whilst DD asleep. 

Choice, come on hon, let us know your results! I'm dying to know if I was the unlucky one out of us 3!!!  

Sarah x


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## Choice4 (Aug 14, 2008)

Ok girls, you don't need a copy of your notes if you are just having immune tests and treatment with Dr G
he would judt do the test and tell you what you need, if you can get it fine if not don't stress

My results are in LAD has gone up to 84.7 from 19.9, I used donor in Greece( the gereek army seems stronger than the british for LIT)
I think it is better to do donor LIT in grecee even if you are not a match with DH, in the end it works out cheaper and better,

Also the results show IVIG works better for me than intralipds

But the bad news is my TNF is still high at 54.3 so i need more humaria ( have had 2 boxes so far i.e 4)

Dr Gorgy said i can try ivig and intralipids, but i think i would stick with ivig, Dr Sher in usa say intralipids but they don't do the test to check, and "one size does not fit all", so i would do ivig and I am not telling them anything for now!!

Cath 7 fertlized thats good, we are now praying for blasts!!

I am at work so would post more latter


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## Cath34 (Oct 14, 2008)

Choice- LAD is great,maybe we had the same donor? 
Sarah, I guess you are thinking Donor now are you? I would try and take DH with you, its not nice to go on your own hun. Do it there and back in a day!!! Is 11th the next date then? Can you ask a close friend? 
Bless DD, we get it in nursery, once theyve all come out and dried she's ok to go out. It sometimes only lasts a few days with some children. Hope she's back to normal soon.  
Super 9, thanks so much for that info, I really appreciate it. I know the area you mean, Ive walked it enough times!!! lol I will look into it now. xx
Sprinkles, how are you doing hun? Thinking of you hun.


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## Sprinkles (Nov 6, 2008)

Hi ladies

Cath ~ 7 thats brill, fingers crossed for you and hope you're feeling better soon.

To the girlies who are having tx at clinics in Manchester and immunes with Dr G, I've just done that.  Not sure which clinics you are with but I'm with St Marys and they were quite good about it really.  To be honest they are not paying the slightest bit of attention why their treatments arent working for me so if they did say anything then I'd just push the question back to them for them to investigate why its not worked.  

Have read the LIT thread and am struggling as if we did decide to go to Greece getting there on a Tuesday from up north is an absolute nightmare and very expensive.  Cheapest flight I can get is about £500 for just me.  Dont want to clog up this thread with my LIT questions so will pop over there.  By the way great news on your LAD levels increasing Choice.

Have booked an appointment to see Dr G to do retests and LAD/DQ Alpha thingy me bobby week on Monday by which time should have had a response from clinic to say whether I can have another fresh shot and when.

S x


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## Choice4 (Aug 14, 2008)

Sprinkle 
For LIT in Greece I went a day before, on monday, slept in greece then had the LIt on Tuesday and was back to london on tue
I used olympic airlies.

Question for Omni !!!!!!!ld like to pick your brains)
My NK cells CD19+56 is high at 56.6, and CD56 is 16.9
TNF alpha is his at 54.3( have had 4syringes of humari)
Ivig reduces NK cell more than intralipid,

My options are 1. Humaria, Ivig, intralipds, ivig
                    2. No humaria , Ivig 42g + ivig 42g
                    3,intralipds, ivig24g+ ivig 24g
What do you think!!


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## sarahh (May 20, 2006)

Choice - glad your levels have increased so well. You must be delighted.  I'm sooooooooooo jealous.    More LIT news from me on LIT thread - its not good !!!  

Also your TNF Alpha are exactly the same as mine and I can't take Humira as you know so I am hoping & praying that other stuff works.  Why are you having or considering IVIG 42g?  Is there evidence that IVIG at that strength may have an impact on TNF Alpha?  

Sorry no more from me, feeling decidedly psst off tonight!  

Sarah x


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## Choice4 (Aug 14, 2008)

Sarah
Please stop feeling ****** of, how can i help, you can pm me, this immune stuff is not easy, some people have immune problems and don't even do any treatment, and still get bfp.
So my dear don't get stressed about it please!!


Yes my nk cell is high and TNF is high if no humaria then a high dose of ivig may help bring it down i am also on cleaxaine


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## sarahh (May 20, 2006)

Choice - see LIT thread - you will see why!  I just feel that the pressure is on so much as I pretty much know that we have one go at this and cannot afford any more after this.  Its so difficult knowing what to do for the best when you are talking about the thousands of pounds we are all spending!!!  

I'll go cheer myself up now (it can't be alcohol so it will have to be chocolate!!!!)   

x


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## karen (Mar 23, 2002)

Hi all,

I've had my LIT with PA! Did any of you faint after having it? Or was it just me? It was all very strange and I have to say I wasnt very impressed by the whole process - no information given, no concern when I told him I was going to faint - he left me alone in the waiting room with my head between my legs for ages before some nurses carried me away somewhere I could lie down!

Anyway I'm now blood brothers with DH!

Sarah - Dont get down. What Choice says is true, many people get BFP without going to the lengths we do and I'm sure some have immune issues too.

Cath - what news on the embies? Or is there any? I'm guessing transfer tomorrow or sat?

x


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## twinkle123 (Mar 1, 2008)

Oh Karen - sorry to hear about the fainting and they way you were treated.   Something you could do without throughout this enormous journey we're all going through.

Well, had an appointment with my GP this morning to ask if he'll do my karotyping blood test that Dr Gorgy asked me to get done. He didn't really have a clue what I was talking about so he said that he'd do it but would write to Dr G first to get more details first. Can just see how long that's going to take!  

I also asked him about getting a saline hysteroscopy and he said contact my local clinic about it. I really don't know how I feel about that because I don't want it to see seem like I'm asking them to do something for another doctor.  Does that make sense?  Also, they've never mentioned it to me so they might think I'm being cheeky asking them to do it. 

Going to phone Dr G on Friday to see if my blood tests are back.  He said wait 2 weeks which takes it until Monday but I'll take a chance.  We'll need them sent up to us so that will take another few days. Then there's the decision about the next appointment.  Do I go to London for another appointment while spending more money, but seeing him face-to-face, or do I have a phone consultation while saving money but not understand what he's saying?   Oh so confused about everything!!!  

Right will stop rambling on and have some lunch
Lots of love to everyone
Susan
x


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## superted (Sep 21, 2004)

HI Girls

We are busy and getting busier it seems.

Firstly choice thanks for asking Dr G wow he doesnt seem that old.  Also now have my ticker eeekkk!

Cath - well done lovely on those eggies and fab fertilisation rates.  I pray for blast now for you.

Sprinkles so sorry to hear your news.  Take care.

Rach - I would just go and see DR g for tests and cycle on the NHS he is more than happy to work with you on that if you have immune issues.

Karen - I had LIT with PA and have to say very vague info just go appt after having bloods and then in you go dh blood taken come back and injected very quickly.  No follow up as such.  I had to phone as I had a bad reaction in that my arm really swelled up and thuoght it was going to pop quite literally and it took PA to contact me 5 days by which time swelling had gone down so I do think its all a bit strange if that is the right word.

Maarias when I came off steroids too quickly on one cycle because I did not know I was supposed to wearn myself off of them I got a rash but it soon went but not dry skin.  ARe you wearning off by 5g for 3 days at a time ie if you are on 25g which I am on it would take you12 days to get down to taking nothing??

On the ivig intralipid debate I must be the very few that have a better reaction with intralipid.

off to see Dr G Friday for my results of Nk cells to see if I require more.

Hi to everyone else sorry not more time to write but at work in my lunch.

superted x


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## lalaby123 (Sep 21, 2008)

Karen - what a horrible experience with PA, its the last thing you need when going through all this....I think you should write to him about your experience, we are paying a fortune for these treatments and the least we deserve is some TLC not to be left to faint...


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## Choice4 (Aug 14, 2008)

Karen
Sorry about your fainting, when i had LIT with Dr Armstong, my arm was pouring with blood and i asked for a plaster and he did not have it, he told me to ask the nurses at reception, so i left with arm dripping with blood
But in Greece they put a plaster immedately after the LIT

Susan
If you can afford it, it is better to go face to face pay your £90 and ask ll the questions you want and get all the prescriptions you may need for the treatment you want,
For the saline hyst or hysteroscopy, you can do it with Dr Gorgy, maybe arrange it at the same time with your results review
First of all get a copy of your result by fax, then you can post it here and we would help you interpret it

superted, saw your signature thats good, can you add more info on it like what treatment , you did etc


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## omni (Dec 4, 2006)

Hi Choice,

My instinct would be to go for humira and 2 x 24gm IVIg before transfer. That is what Dr Beer would have done. I would only possibily have changed that with your high TNFa if the test showed that intralipids worked better for you than IVIg. Even then, don't forget the test only shows how intralipids work with NK cells. The best combination for high TNFa is humira followed by IVIg.

Just be careful about swine flu as humira will (hopefully this time) lower your immune system. 

What is your instinct? Take other opinions into account but make your own decision. 

Apologies for not replying earlier but I had some scary bleeding yesterday thought it was all over but scan this morning showed baby still doing fine. It's torture waiting till 12 weeks. Congratulations Superted! I understand why you have only just put up your ticker. 

Fantastic news on your embies Cath - can't wait for further news!

Karen, sorry about your LIT experience. Dr A does not appear to be the most gentle of Drs. I had an endometrial biopsy done by him once (OMG  ). Thought it was just the procedure but have had one done elsewhere since. 

Sarah, sorry its so damn difficult trying to get LIT organised. When are you planning on cycling? Hope your little girl is getting better and that you have already had chicken pox. 

Maarias, Hope the rash has gone now.

How are you doing BMac?  

Hi also to Susan, Lalaby, Sprinkles, Donkey, Jazz, Cozy, Lou, Super9, Pinpin and other fellow immunies. 

Omni


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## Han72 (Feb 15, 2007)

Hi everyone!

Just a quickie to say I'm not feeling particularly reassured by these comments about Dr A! I really hope I don't need LIT cos the patient care there sounds DREADFUL!

Karen - I hope you're feeling better now lovey! 

Choice hon - link here to Sher's site at the SIRM clinic in the US, he explains how much IVIG he would prescribe and when, maybe it could help you to decide...?

http://www.haveababy.com/?Role_of_Therapeutic_Immun.

Omni - really glad bubs is ok, must have been scary!    

Susan - I can see your dilemma re whether to do a phone consult with Dr G! He really is difficult to understand, even when face to face and I consider myself a sympathetic listener!

Anyone else find that Gorgy is a bit of a mumbler? I had my appy with him on Monday morning, came out with total brain damage and a form to do LAD, DQ Alpha and the Intralipid NK assay... nearly 800 squids, DH nearly had a heart attack!

Re: Humira - I had a telecon with Dr Geoffrey Sher of the SIRM clinic recently and he set himself up as the "pioneer" of Humira use (funny that, I thought it was Alan Beer  ) anyway, he said he didn't use it anymore because (and I'm paraphrasing here) it knocks the immune system out altogether which he felt wasn't necessarily a good thing.... now given that humira did sweet fa to my TNFa levels I don't know how true that is and how much of it was him trying to sell his new improved protocols... 

In anycase, I'm probably still gonna stick with either IVIG or Intralipids or mixture of the 2 along with clexane and steroids as Humira just doesn't do it for me (and it costs a flipping fortune!) Now it's just a matter of waiting for those results to come back before deciding where/whether to do LIT and whether intralipids is likely to work for me...

Good luck and love to all!

xxx

/links


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## Cath34 (Oct 14, 2008)

Well girls, I've literally just had a call from my embryologist in LWC ref an update on my embies!! Fair play to her she rang me from home as she didn't have time in work bless her heart!

Well I guess I should be pleased but am such a bloody perfectionist I'm not sure.
80% of them were at 4cell when she checked them today and were scored a mixture between 1's and 2's 
Hopefully they will be 8 cell tomorrow and still 1's and 2's. The only thing that scared the hell out of me was when she said my eggs were average quality and when she asked my age she then said no thats fine they're really ok. Maybe she thought I looked younger in the flesh!!!    I think Ive aged loads on this epic journey!!!! So maybe ther're not so bad, its just that Lyndon has always told me Ive had text book perfect embies 811's etc.. but never really made a comment about my eggs themselves so I got really scared.
She's going to ring me early tomorrow but was hopeful for blasts and ET Sat. We'll see. I'm bricking it now. Please hang on in there embies


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## sarahh (May 20, 2006)

Hi Cath, what do you think of the embryologist - have you faith in her??  Well you only need 2 to put back in (my brain couldn't work out what 80% of 7 is!!!! but its more than 2!!!).  day 3 8 cell is great, mine were always slower than that (obviously that must be down to DH's sperm not my eggs    )    come on cath's embies, carry on dividing nicely! 

Soni has had her blood tests done for screening and all being well we are both off to Greece on Tuesday, she is having her DH blood for LIT and I'm having her blood!!!!!!  Thank you Soni!  

Omni / Choice - its suddenly occured to me that I'm having the LIT next Tuesday and I was hoping to start stimms on Friday / saturday this wk after scan on Friday (although Dr G said he could wait to start me until after next Tuesday) but then I'm going to be starting prednisolone on day 6 of stimms.  I heard that Dr T recommends that no steroids or anti-histamine for at least 2 wks after the procedure.  Clearly, I won't be able to stick to this.  If I have the IVIG then I think that Dr G gives antihistamine at the same time too!  Omni - what did he advise you?  

Karen -sorry to hear about your horrendous experience at PA's.  It is quite painful - is that what caused you to faint?    Hope you feeling bit better tonight. 

Susan - if you can't hear Dr G then say he is not very clear - he often talks on speaker phone which is not clear at all.  If you say you can't hear him very well then he will switch off speaker phone then you will probably find that he is much clearer!!!  Just a thought!! 

Hi to everyone else i've missed. 

Sarah x


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## Choice4 (Aug 14, 2008)

Nixof1
Thanks for posting that link of Dr Sher
I would post it here for our girls to read, you can copy or print it in case it gets deleted

The Role of Therapeutic Immunomodulation in IVF
a. Corticosteroid Therapy (Prednisone, Prednisolone and Dexamethasone). Steroid therapy is routine in most IVF programs. Some advocates use daily oral methyl prednisolone. We prescribe oral dexamethasone commencing about ten days prior to initiating ovarian stimulation with gonadotropins, and continuing until the diagnosis of pregnancy. In the event of a negative test (Beta HCG or ultrasound), the dosage is tapered over a period of seven to ten days, and then discontinued. Pregnant patients often continue treatment through the first trimester. Steroids are believed to act by inhibiting the cellular immune response.

b. Heparin. There is compelling evidence that the subcutaneous administration of heparin (at a dosage of 5000 units twice daily to women undergoing IVF for female causes of infertility who test positive for APAs, but negative for NK activation, significantly improves IVF birth rates. Heparin administration is withheld on the day of egg retrieval until immediately following embryo transfer, whereupon it is recommenced and continued until the 8th week of pregnancy. Heparin is thought to act by repelling APAs from the surface of the trophoblast (the early "root system" of the embryo). Provided that platelet counts are normal, are checked on a regular basis, and heparin is withheld on the day of egg retrieval, its administration is virtually risk-free.

c. Low Molecular Weight Heparin (LMWH) (Lovenox, Clexane, and Fragmin). LMWH is equally as effective as heparin. It has the added advantage of having to be administered just once (rather than twice) daily and it causes less local irritation or bruising. It does cost considerably more than regular heparin, but is preferred by many patients in need of this therapy.

d. Intravenous Immunoglobulin G (IVIg). IVIg is a sterile protein preparation derived from human blood. Every effort has been made to ensure that it is free of bacterial and viral contamination. There are basically four ways in which IVIg is believed to offset or counter the anti-implantation effects associated with reproductive immunologic deficiencies.

First, it is a potent suppressor of activated (toxic) Natural Killer cells (NKa)-the immunologic guardians of the uterus.

Second, IVIg reduces the activity of CTL's (activated T-cells). This is another type of immunologic cell that acts by producing TH-1 cytokines ("toxins") that can damage the early implanting conceptus.

Third, IVIg is believed to suppress the ability of another type of immune cell called B cells. When activated abnormally, these cells produce damaging autoantibodies such as antiphospholipid antibodies (APAs) and antithyroid antibodies (ATAs).

Fourth, IVIg contains anti-idiotype antibodies that directly counter many of the damaging effects of autoantibodies (antibodies that attack the body's own cells), such as APAs, thereby protecting the early "root system" of the embryo/conceptus from damage.

IVIg has had some undeserved bad press. Since it is a blood derivative, the thought of administering it in an era where HIV is rampant, is frightening to most. However, consider the following: IVIg products available in the United States and the United Kingdom are subject to the most stringent controls and scrutiny. According to the manufacturers of IVIg, there has not been a single case of HIV viral transmission in more than two million administrations and there have only been a few isolated cases of Hepatitis C. This is not surprising, since IVIg is derived from the very same blood pool used for transfusion purposes, and since millions of units of blood have been administered in the United States over the last 7 years without any reports of HIV transmission.

The IVIg available in the U.S is thoroughly tested. We hold that if administered properly by qualified medical personnel, and if the appropriate precautions are taken, IVIg currently used in this country is virtually devoid of viral contamination.

We recommend that IVIg for increased NKa be administered 7-14 days prior to embryo/blastocyst transfer. The selective use of immunotherapy has, on numerous occasions, enabled us to achieve successful pregnancy in patients who had previously suffered repeated IVF failures (4 or more). Many such patients had previously been advised not to try again with their own eggs. We are able to report IVF births occurring with the aid of IVIg in numerous cases where the woman had previously experienced more than ten IVF failures. I recall a case where a 42 year old woman was successful with us (using her own eggs) following 22 consecutive prior IVF failures. We believe that such results could not have been achieved without access to selective immunomodulation.

In cases of autoimmune immunologic implantation dysfunction associated with NKa+ we recommend giving 40G IVIG slowly, 7-14 days prior to embryo transfer (ET) and then repeating the dosage once more soon after a positive beta hCG result, 11 and 13 days post egg retrieval (ER). For alloimmune implantation dysfunction, we treat with 60G of IVIG 7-14 days prior to ET. This is repeated with the positive, 2nd beta and thereupon, 60G every month or 30G given every 2 weeks until the 24th week of pregnancy. Severe side effects of IVIg treatment are rare. Patients may suffer from malaise, fever and headache. IVIg is a relatively expensive mode of treatment - the cost for one course of treatment being $3,500-$5,500, thus preventing more wide use of this preparation in IVF

Indeed, some NKa+ women do conceive and then continue with healthy pregnancies, without having undergone prior immunomodulation therapy with IVIg (or intralipid). However, in our opinion, the chance of this occurring is so significantly reduced as to justify the recommendation that such treatment be administered in all cases where a woman undergoing IVF tests positive for NKa (NKa+) and in all cases of alloimmune implantation dysfunction (regardless of her NK status). Presently, there are fewer than a half dozen highly specialized Reproductive Immunology Reference Laboratories in the United States that are capable of measuring the necessary immunologic parameters with a sufficient degree of sensitivity and specificity to be clinically useful. We do not regard measurement of factors such as lupus anticoagulant to be of practical value in the diagnosis and management of immunologic implantation dysfunction.

e. Intralipid, a possible replacement for IVIG. For us at SIRM, advocating the use of IVIG over the last decade has come at a considerable price. Clearly, women requiring IVIG have been concerned about the cost (more than $4000 per dosage), reported side effects and, given the HIV/hepatitis scare, have been reluctant to receive a blood product. To make matters worse, under-informed critics have for unexplained reasons played on such unfounded fear often raising it to the level of alarm. The fact is that over the years we have administered IVIG to thousands of women, without a single report of viral transmission and few significant (but always transient) side effects.

In 2006/2007, reports began to surface regarding a low cost (about 1/10 the cost of IVIG) synthetic product called Intralipid, which upon being infused more than a week prior to embryo transfer would lower NKa and furthermore, was virtually free of side effects. Intralipid stimulates the immune system. Evidence from both animal and human studies suggest that intralipid administered intravenously may enhance implantation and maintenance of pregnancy. Intralipid is a 10% intravenous fat emulsion used routinely as a source of fat and calories for medical patients who require intravenous feeding. It is composed of 10% soybean oil, 1.2% egg yolk phospholipids, 2.25% gylcerine and water. The appeal of Intralipid lies in the fact that it is relatively inexpensive and is not a blood product.

In late 2007, we began evaluating the effect of Intralipid in patients who had activated Natural Killer cells, and for whom IVIG therapy would otherwise be indicated. Thus far, we have treated numerous women with NKa using Intralipid 20%. More than 50% of the patients achieved viable ongoing pregnancies, showing Intralipid therapy to be at least as effective (and perhaps even more so) than IVIG. There were no significant side effects and patient tolerance of this treatment was high. Against this background, we at SIRM have elected to offer intralipid therapy as a low cost, safe and effective alternative to IVIG therapy for both alloimmune and autoimmune implantation dysfunction. 100ml of solution 20% in 500cc of normal saline solution is infused intravenously 7-14 days prior to ET, immediately following blood diagnosis of pregnancy (beta-hCG test) and then monthly until the 20th week of pregnancy.

http://www.haveababy.com/?Role_of_Therapeutic_Immun


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## lalaby123 (Sep 21, 2008)

thanks for that Choice very informative xx


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## Choice4 (Aug 14, 2008)

Omni
Thanks for replying, also happy your scare was nothing to worry about
Since i have been with Dr Sher, i have had 40g ivig before so i am ok with a high dose
My concern is how close to ET, can you have humaria, Dr G, said i can have humaria 1wk apart instead of 2wks apart.
My only fear is that humaria raised my TnF alpha last time instead of reducing it, but i guess if i combine it with ivig , it may work better,

I am thinking of 42g ivig + humaria, and maybe another ivig
just wondering if intralipids may have any other effect to offer here!!

Cath I am happy your embs are doing well, embs go, go go!!

Sarah I am happy you have sorted out your donor, who is soni!!
is she an ff girl or does she work for Dr T
I think you should avoid steriods and antihistamine 48hrs before and after LIT

Hi others, hope all is well


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## Sprinkles (Nov 6, 2008)

Thanks for the info Choice.

Cath ~ fingers crossed for those embies they seem to be doing great.

Sarahh ~ good luck for Tuesday, can I ask how far in advance do you get to know that you have a donor/appointment in Greece? I know Soni is your donor this time but I mean usually when you have to wait for Dr T to find you one.  I'm anticipating needing LIT and at the minute am trying to weigh up the costs of going to Greece.  As I live up north it'll take me 3 days to get there and back, ie would need to fly to Heathrow on the Monday evening, do Greece on the Tuesday and fly back to Manchester from Heathrow on Wednesday morning so lots of flights and hotels. 

In general ladies did all of you who went alone find it safe enough there getting around and stuff?

Nixf01 ~ I agree not feeling really good about the comments about DrA, has really put me off.

With regards to the IVIG thing when Healthcare at Home came to do my intralipids she mentioned that if she did IVIG for me she would have to administer antihistimines or something to avoid a reaction, but hadnt heard of this as thought it would counter act the lowering of the NK cells etc but Dr G gives this as well does he?  How long do you leave between having LIT and IVIG ladies so as not stop one working?

Going off the subject slightly as well, I cant remember where I posted but remember saying how much I'd bloated up on prednisolone and someone mentioned that as soon as you stop taking it it goes down.  Wow yes cant believe how bloated I actually was until I've stopped it (weaned myself off) my arms, face and stomach (slightly) have gone down, only thing out of this BFN that has made me feel better.

Anyway hope you lovely ladies are ok, only two more days til the weekend and Cath's ET woo hoo!


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## Choice4 (Aug 14, 2008)

Spinkle
If you need donor LIT, tell Dr T, in greece, and when ever you tun up your donor would be ready no hassels.
I think he uses some of the students from the university, we saw one donor sitting there when we went, and Cath and i suspected we used the same donor,
The only problem is that it is had to get hold of Dr T, i heard he is on hols now,

For ivig you need antihistamine to avoid a reaction, but for intralipids no need for antihistamine

It is better to do the LIT first because you have to wait 4wks after the first LIT to go back for the 2nd dose, then 3-4 wks to retest and check your levels
After then you can start your ivig.

Going to greece was no problem at all, when you get to greece airport, you take the bus X95 to the final stop, then get the metro to evegalimous station and then walk to the clinic , it is easy, but outside the clinic you need to know what buzzer to press as it is all written in greek, press the middle one that says 1, which is 1st floor and thats it

I find going to greece same day and back was stressful for the girls , so i went on monday, had LiT on tuesday and back on TUesday
Olympic airlies, easy Jet or BA


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## Cozy (Jul 17, 2008)

Hello ladies,

having read the comments on this thread and others I am less inclined to go and see PA for LIT. Especially as I have been told he is more expensive than going to Greece.

Karen, I cant believe you were treated in this way, it was terrible. If people keep posting negative reports he will get less business, sounds like he/they need to pull their finger out.

Has anyone been there and back in a day flying from Manchester? Even though I've not yet got a date for my ET from Reprofit (I'm 3rd on the cancellation list) I have been looking at flight times/prices and I dont think it can be done in 1 day from M/cr and the flights seem expensive. If I go, I'll probably stay overnight, but it looks like it will work out expensive. Anyone got any tips?

Sprinkles, how much is it for Healthcare at home to do your IVIg/Intralipids ? Is it better/cheaper than having it done with Dr G?

Susan, I got my results back off Dr G in 9 days and they were faxed to me. I did a phone consultation and it was fine. I had read my results and posted them on here to get some advice of the lovely ladies and also read Dr Beers book again. I prepared some questions and he answered those aswell as telling me about my results. I just wish he could have one conversation at a time though, he went off a few times to answer another phone or to speak to Clarissa. I would prefer his undivided attn when we are paying £90 for his time. 

Nix/Choice. Thanks for posting that info, very informative. Does anyone know if Dr Sher would still use Humira for uNK cells (CD57)?

Hi to everyone else

Cozy


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## Choice4 (Aug 14, 2008)

Cozy
Dr Sher does not do humaria or LIT at all

Dr Gorgy answers calls while consulting , but we have to accept it as one of his faults, it is because we ladies phone to ask questions, as sometimes we are desprate and also because he does not have a nurse

So you would get used to the interuption with time


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## Cath34 (Oct 14, 2008)

Morning Ladies, well I've just had the call. Good news phew!!
Eleanor, the embryologist (who seems **** hot may I add  ) rang promptly at 8am to tell me 
4 of my embies were 8 cells, and the other 
3 were at 7cells and she was expecting them to be 8 soon? 
3 of them are grade 1,
3 -grade 2
1 grade 2+ (the weakest one)

She said they would culture them all to blast and that ET will be Sat afternoon. 
I'm just   that I get 2 very good blasts for ET.
I'm also going to organise acupuncture with Zita West clinic before and after ET and am going to ask Dr G about IVIG at some point after ET  (8 days?) like Omni had and Choice you seemed to advocate this too didn't you.
God I am soooooo scared now. Thanks all for your support.

Sarah, are you there Fri or Sat Morning? we could have met up for another coffee?
Omni- I am so happy your precious little one is doing well, well done you. You are definitely my inspiration. 
Sounds like Lit with PA is a nightmare, the sooner Dr G does LIT the better hey girls!!!! xx


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## super9 (Aug 5, 2008)

It's a real shame that a lot of you ladies have had such bad experiences with Paul Armstrong. But to keep this is perspective, I  went to see him in July and because of all the bad experiences I had heard about, DH and I went very much with our guards up- but I have to say he was nothing but a complete gentleman! He was gentle when taking blood from DH and extremely gentle when giving me LIT, and most of all he was extremely positive that tx would work and even went to the length of asking me where I would arrange my pregnancy scans, which completely threw us as I told him we had nothing planned as we wanted to see if tx would work first. After my LIT I  had a nasty reaction, he rung within 2 hours and followed up with a letter.

So my experience of PA is completely different to most of you ladies .


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## omni (Dec 4, 2006)

Sorry just a quick email as have to go out.

Wow Cath, what great news. I'm sure you'll have at least two super blasts with all those to choose from! Don't wait to day 8 if you are thinking of having an extra booster. I started getting a sore throat and achey knees day 6 (convinced this is when embies were trying to implant and immune system was fighting back). It was a Sunday and Dr Gorgy was away until Tuesday morning - so I had IVIg on Day 8. I would have done it on Dat 6 if I could.

Choice, I did my second lot of humira a week apart as I wanted it finished before transfer. It is better to have 2 x 25gm IVIg (e.g. CD6 and 2 days before tranfer) than 1 x 40. Dr Beer always said 25 gms was enough as 1 dose (unless you need higher dose because of weight which you do not). Far better to increase frequency of doses rather than the amount given each dose. So e.g. far better to have IVIg 25 gm every two weeks rather than say 40gms every 3 weeks.

Omni


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## Cath34 (Oct 14, 2008)

Thanks Omni. Do you mean IVIG 6 days after blast transfer? Also would it be a good idea to do a blood test at the same time to see if there's any hint of implantation at that stage. I'm not sure when Dr G suggests testing, does anyone know? Is it a blood test or urine?


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## lalaby123 (Sep 21, 2008)

Cath great news re your excellent embies, good luck on transfer on Saturday sending them lots of sticky sticky vibes xxx


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## almond (Mar 20, 2008)

Hi ladies, just wanted to say hello, I'm sure I have already unknowingly bumped into a few of you already   I post mainly over on the poor responder thread and am currently doing a 2nd NHS cycle, but with immune treatment with Mr Gorgy and have been there quite a lot recently! Sadly my cycle is currently hanging in the balance as I now only have 1 follie - done one lot of intralipids but agreed today that I wont do any more unless I get an embie and even then will only do intralipids unless I miraculously get a BFP. 

Anyway lots of luck to all of you, I do read here occasionally and follow your journeys. Congratulations for the fantastic BFPs! I will be popping back on and posting some questions here as well and/or over on the immunology thread - hope that is ok!

Cath      for your embies

xxx


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## Sprinkles (Nov 6, 2008)

Hi ladies

Super9 ~ good to hear a bit more positive story about MrA thanks

Cath ~ great news super embies!

Cozy ~ I dont think there are any flights out of or back to Manchester on either Mondays or Tuesdays so would have to go from Heathrow.  I did some research last night and basically you'd have to fly to Heathrow on a Monday evening, book hotel for Monday night at the airport, fly out to Athens from Heathrow early Tuesday morning, fly back late Tuesday night, stay again in hotel Tuesday and fly back to Manchester early Wednesday morning.  Bit of a trek.  Found hotel at airport for £63 per night, flight from Manchester to Heathrow return would be £74, and flight to Athens with BA out and Olympic back was £197.  So total journey would cost around £425 then cost of travel in Athens and obviously cost of treatment on top of that.  Hope that helps.

Does anyone think that if we did nominate to donate each other our blood for LIT Dr G might be more inclined to do it or is it the red tape and stuff that is stopping him?


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## Cath34 (Oct 14, 2008)

Hi Ladies, I dont know for sure but I have been feeling progressively unwell since Mon and am worried that I may have some hyperstimulation. I have chronic lower ab pain, nausea, feeling faint, strong urine and generally feeling rough no energy. Firstly I thought it was after effects of EC but I have never felt like this before. I decided to ring Dr G and I'm going in to see him tomorrow or if not Sat am before ET just incase. He said for e to drink loads, which I am and he'll make a decision when he scans me!!!!! God I hope its not that, I really dont want to freeze my embies but I really do feel awful. I did keep telling myself stop being silly it will pass but it hasn't yet!!!
I dont want to bring the thread down but just felt I needed to post. xx


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## sarahh (May 20, 2006)

Cath hon, sending you huge   and   that embies can be transfered.  They say that hyperstimulation response is good in terms of getting the embies to implant but not if Dr G won't put them in!!  Sorry you are feeling so rough, kind of thought that you had passed the worst of it and were feeling a bit better.  I remember being given some co-drydamol strong painkillers after one of my ec so wonder if that would help?  But then I didn't want to take anything that may harm anything trying to implant  .    

Are you going to see how you feel in the morning or are you going to go tomorrow anyway?  Did he offer any other advice?  

Choice - Soni is the lady that ironically I got an appointment for the last time we were there.  She does post on here (or on LIT board) occasionally.  

Dr T has said leave as long as possible before having steroids!  So going to see how long we can put off stimms for without jeaopardising this cycle.  

Really must go, loads to do before bed. 

Sarah x


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## almond (Mar 20, 2008)

Cath - really hope you dont have hyperstimulation, lots of luck to you x


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## Choice4 (Aug 14, 2008)

Hi all 
It has been buzy here
I would be having intralipds tomorrow with Dr G, about 1pm, if anyone is around you can pop in for a chat!!

Cath
Congratulations on those embs
First of all i think you need a scan, if any evidence of hyperstimulation, then i would advice to freeze those wonderful embs, the lab has got a good thaw rate so it would not be a problem for FEt.
If you are still not feeling well i suggest you go to your nearest A&E tonite!!

Cath also if you go ahead with the transfer, insist on ivig on day 6, then from day 3 increase the dose of your steriods for the next 3days i think omni did it too.
We all have to be our own doctors sometimes, and we know our body better

Omni
I get what you mean aboutspacing out the ivig
The plan is 40g ivig friday, humaria saturday, then ivig 24g monday, humaria 1wk after
I would have preferred the ivig closer to transfer, but by then i would be in usa (and they want me to do intralipds anyway)
I hope to do another ivig when i am back after transfer
Dr sher only used to give 40 or 60g ivig so i am ok with the hgh dose
Omni how do you see this protocol

Super
Dr G is thinking of thr LIT, but he has to go visit the lab in greece or mexico to see how it is done, get the protocol, apply for uk licence( hopeing the don't refuse), also hope he would not step on the toes of those doing the LIT, i.e dr A and Dr T
So his plan is in the pipe line, it may take some time!!

Almond, i hope your folicle does well , it only takes one, if not, you may want to look into the protocol and dose used!!, but fingers crossed for now

See you all 2morow at 1pm or monday at 11am @ Dr G's


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## omni (Dec 4, 2006)

Choice, is it that close to your cycle! When is ET?

Cath, so sorry to hear about your worries. Hope you are feeling much better today. If you are taking your little ones to blast they should survive freezing in any event. I know its not a decision you want to make but whatever you decide please take proper account of your own health.   that you feel back to normal before Saturday. (PS: I was talking about 6 days past egg collection - but it was because I got a sore throat then - I only increased steroids for a couple of days as I could not get the IVIg with Dr G away - otherwise I just would have just had the IVIg). 

Sarah, - re: LIT and antihytamines/ steroids. Have you had IVIg before? I don't get any negative  reaction and so don't bother with antihistamines (Benadryl). If it is your 1st time Dr G might like you to take a benedryl tablet just before. It is only JUST before that he gives it to you - so I wonder whether they could start you off slowly on the drip and keep an eye on you. If you had any reaction they could then give it to you. I don't know - ask Dr G. 

As far as steroids are concerned, Dr T told me also to wait until at least 2 weeks after 2nd LIT but preferably 4 before starting steroids (I waited 2). When I went back for 3rd LIT, he told me to cut immediately from 25mg to 10 mg for 2 weeks. Dr G advised me to go back to 25mg after 2 weeks but I decided just to increase it to 15mg as NK cells had started going down (maybe partly because of LIT) and I'm taking regular IVIgs in any event until they are within range. Steriods lower the immune system whereas IVIg floods the body with good antibodies counteracting the NK cells/TNFa etc. So I feel more comfortable relying on IVIg as much as I can (rather than pred) - particularly with swine flu around. If my NK cells had not have gone down (from 30 to 17 when tested a week after LIT) then I would have gone back to 25mg of pred - I will see what my next blood test shows and adjust if necessary - bloods taken last Weds so should get results back early next week). 

Omni


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## Choice4 (Aug 14, 2008)

Hi girls I am currently sitting in dr g's office having ivig would have 40g I.e 4 bottles.  The clinic is not too busy today maybe it is because it is fri


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## bankie (Dec 27, 2007)

Hi Ladies,

I have been meaning to introduce myself for a while as I've been seeing Dr G on and off for a few months now - I think I may have bumped into some of you on one of the other immunes threads.  I moved to Dr G after all of my immunes at the Lister came back clear, yet I never seemed to get a BFP.  My tests with Dr G have revealed a whole host of problems including:

NKCs - 50:1 = 18.3, CD56 = 19.8, CD19+ cells, CD5+ = 42.1 

LAD IgG+ = 6.9 and B Cells IgG+ = 20.  DH and I have a partial DQ-Alpha match and Dr G is recommending Greece for donor LIT

TNF-Alpha = 50.3 

Homozygous MTHFR

I will get my humira next week, but just wanted to ask about the timing of LIT - Am I right in thinking that I have 2 treatments 4 weeks apart then retest?  I'm afraid Dr G was really vague about timings etc, so I'm just trying to get everything straight in my head.  I want to cycle again asap, but realise that I need to get all of my levels right first so I'm not sure if I need to arrange LIT now or wait to see the results of the humira on my TNF-Alpha      Does anybody have any thoughts?

Also, I have started on high dose folic acid due to my MTHFR, but have seen elsewhere on FF that some people also take B-Vitamins.  Does anybody know whether I should be taking these too and which type precisely?

Sorry for all of the questions, but to be honest I came away from my appt feeling really confused.  I had initially planned to do all of my treatment with Dr G, but due to my confusion and the other stories I have read on here lately, maybe I should go back to the Lister for my IVF.....even though they didn't think I even had any immune issues!

Hopefully some of you can set me straight on what I should do next!!

Thanks,

 bankie


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## Choice4 (Aug 14, 2008)

Cath I forgot to mention thayt dr sher always advice to have sex nite before transfer


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## karen (Mar 23, 2002)

Choice - why? 

Spoke to Dr G on thursday and he said he'd spoken to PA who said no probs with taking steriods after LIT whereas Dr T says there is a problem - who on earth do you believe? Its so confusing. Anyway DR G said take the steriods (48 hours after) so i am!

x


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## Sprinkles (Nov 6, 2008)

Yeah its the weekend! woo hoo!

Cath ~ hope you're feeling ok, keep with the water hun and fingers crossed you start feeling a little better and ET goes ok.

Cozy ~ apologies forgot to answer your questions on Healthcare at Home.  I had intralipids with HCAH and including what I would have paid in train fares down to London it worked out the same price and it was a little more expensive as I had it done on a Saturday and its more expensive at weekends, so if you had it through the week it should work out cheaper.

Hope that helps.


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## karen (Mar 23, 2002)

Cath - hope you feeling better and it all goes well tomorrow?


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## Choice4 (Aug 14, 2008)

Cath
Hope you are feeling much better after we met at Dr G today, good luck for the ET tomorrow!!

Re sex day before transfer, they said the sperm helps guide the embs/prepare them as to create a natural set up

Omni
I saw someone doing ivig in belgum for 200 euros per 5g,( i know you have been asking around) so 20g =1000euros

Bankie
Welcome on board!!
Yes for LIT, you need to start now, as after the 1st you wait for 4wks then the 2nd then wait 3-4wks to retest
Arrange LIT now as sometimes it is difficult to get Dr T( i think he is on hols now)
In the meantime start your humaria, because you have to wait 2wks before the 2nd humaria
You can add vit B, fish oil, asprin to your mix, it helps

It is up to you which clinic you want to cycle with, best to follow your mind
My advice is sometimes it is difficult to understand Dr G, but once you getthe hang of the immune, it becomes easier, it is always advisable to go home, get your taughts togethre,write down your questions and send him an email, in that way he can answer all your questions.

And of course we are always her to lend a helping hand

Good luck


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## Cozy (Jul 17, 2008)

Hi Sprinkles,

Thanks for the replies.

I have done some research too. Its a shame Olympic dont fly Mon/Tues from M/cr, it would have been very handy. the cheapest flight I have found so far is with Easyjet frm Gatwick. So I guess I would have to fly from Heathrow or Gatwick.. which is a pain in the  

I am in a real quandry as to what to do. Do I go to Athens or do I go to London.. cant decide   
I dont want to be spending a fortune but I want to make sure its done as well as it can be... decisions decisions !

How do you arrange the treatment with healthcare at home? How much was the Intralipids?

Cozy


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## Pinpin (Nov 4, 2008)

Hi All

Just a quick one from me tonight

Cath - I hope you feel better and   that you haven't hyperstimulated - I hope transfer goes ahead tomorrow as you have wonderful embies 

Those terrible comments about Dr A have totally put me off especially the one about blood dripping from the arm on the way out as i am terrified of needles so like that anyone approching me with one be armed with patience, care and gentleness especially if I'm paying them£1,100 for it ! I will raise this Dr G tomorrow at my appointment although not sur ethere's anythng he can do about it. It would have been too late for me to go to greece anyway as my NHS cycle is starting in sept.
I have been thinking abou this humira business and thinking i might give it a go as TB test has come back neg. We're seeing Dr G tomorrow to define the action plan and see how many doses of humira i can fit in before i start...

Pinpin x


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## Sprinkles (Nov 6, 2008)

Hi All

Cozy ~ yeah its a complete pain, everything seems far more difficult cos we're up north and you're right its a pain in the  .  I got a prescription of DrG for intrapilids and then range HCAH to arrange they were really lovely, cost around £450.  I've got same dilemma dont know what to do and havent even had the tests done yet!!!  When you starting next tx?

Pinpin ~ let us know how you get on with Dr G tomorrow and what he says about LIT.  I'm thinking I might be starting my next tx in September and am just wondering if I can fit LIT in beforehand.  Wondered if you girlies could help.....

Going to Dr G on Mon 17th, from this it will take 2 weeks for test results, end of August.  Then I would have to book LIT potentially in Greece which at best would be 2 weeks after that, which is mid September, 4 weeks after that revisit, mid October, then 4 weeks after that retest, mid November, then start tx is that right?  If so I dont have that time to do all the LIT which I would love to but as am on NHS and they wont treat me after I'm 40 then need to be treated sooner rather than later really.  Is it right that I could cut 2 weeks out for having 2 doses of LIT?  Or other question would be if I had one LIT before tx, then start the steriods and IVIG/intralipids when/can you have LIT after tx whilst still taking steriods, if at all?


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## sarahh (May 20, 2006)

Sprinkles - well your q about steroids / anti-histamine is exactly my dilemma as Paul Armstrong & Dr Tsagaris advise completely different thing.  

I have had to start stimms tonight (am scared, its been so long since I've done it! -Off to get the deed done in a minute).  Am going for LIT on Tuesday in Greece.  Dr G usually starts Pred on CD6 which would be Weds.  Dr G said maybe wait a few days and also have intralipids or Ivig the following Monday (i.e. 6 days after the LIT).  He didn't want to wait till Weds for me to do stimms as he is on hols from 31 Aug so I now feel a bit rushed into starting tx but on the other hand I am obviously ready to start so don't want to delay...... 

Anyway Omni, no I've never taken pred, never had ivig or intralipids before.  My TNF alpha was 54.3 (but that was last November & not had retested since but been told unlikely to change on its own); my NK cells are slightly raised but not horrendous.  What would you recommend!! 

Choice, sorry missed you today.  Cath said you were going in but I had to leave as had several things to sort out.  But am there on Monday for a scan at 11 so will see you then! 

Hope Cath doesn't mind me telling everyone but she is ok and is having ET tomorrow.     Good luck Cath x  

Right, off to do my first stim......  (oh I've started on 450iu fostimon - higher than I've ever had before  ).  Am scared!!!  

Hi to everyone else.  
Sarah x


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## Sprinkles (Nov 6, 2008)

Thanks Sarahh, am I right in thinking your LIT on Tuesday is your second?  How long ago did you have your first?

Also how long is DrG on holiday for?

Good luck with the stimms, here if you need us hun, dont be scared....


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## Donkey (Nov 24, 2007)

Cath so glad you feel better and good luck with transfer tomorrow  

sprinkles hope your stims went well tonight  

Can anyone help, sorry I'm a bit confused and want to try and have things straight in my head before I see DR G on Tues...is LIT related to level 3 tests?  What exactly are level 3 tests?

Enjoy the rest of your friday
donkey xx


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## Cozy (Jul 17, 2008)

Sprinkles,

I dont know when my next cycle will be. I am no. 3 on the cancellation list a Reprofit and have been told I will get 8 weeks notice. In the last 2 months I have gone from no. 12 on the list to No. 3, so I'm hoping it will be sometime later this year.

I was thinking about going to Athens on 22nd Sept, if I could get an appt as I dont want to be on the last minute trying to fit everything in before my next cycle. When are you going? Dr Tsagaris said they do LIT every other Tuesday from 25/8

Re the steroids, Dr T said the 2nd LIT should be done a month before a cycle to avoid steroids and other immuno-modulating therapies.

My test results were back in 10 days, which was quicker than expected

Cozy


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## Cath34 (Oct 14, 2008)

Thanks everyone for your good wishes. Dr g scanned me and it's all good. Swollen still but ok for transfer. 
Sarah, good to hear you've started stimms hope it went well. 
Choice I hope u are feeling well after your massive dose of ivig!!
Thanks for the tip regarding implantation !!!!
Keep in touch and let me know when your Et is. 
I'm having intralipids tomorrow morning just for fun!! Well why not, I'll try anything. 
Well good luck to everyone, apologies I cxnt keep up!! 
I'm off for an early night  
speak to you all tomorrow. 
Xx


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## kara76 (Dec 14, 2004)

cath loads and loads of luck tomorrow, you will be a busy bee

i will be thinking of you


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## twinkle123 (Mar 1, 2008)

Wow, you lot have certainly been chatting.!  

Well, phoned Dr G to see if my blood test results are back which they are.  So back down to see him on Tuesday to discuss the findings.  I was going to get the results posted to me so that I could put them on here and have all you experts translate them for me but with the postal strikes there's no point seeing as we're going to see him on Tuesday.  Do you think he'll give us a copy of the results away with us?

Have just spent a small fortune yet again booking flights, hotel etc.... We've decided to stay an extra night so are flying down from Aberdeen on Sunday afternoon and back up on Tuesday evening.  

Off to bed now.  Did lots of gardening today and should have collapsed in bed ages ago but had to sort out everything for London.

Take care everyone
Susan
x


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## Choice4 (Aug 14, 2008)

Susan
You can phone today or monday and carisa or DR G would fax your result to you, thats what I would do, so as to prepare my self with all the questions
And yes Dr G, gives everyon a copy of their results and highlights the important sections so everything is transperant. ( i am not sure other clinic do that)
Don't forget to get any prescriptions you need, when you go for your follow up, even if you have not made up your mind what you want to do, at least that would save you another trip or phone call.
As you are coming from far away, i think he would be happy for you to use healthcare at home for your ivig or intralipids

Central healthcare at home 01420543400

Healthcare at home  08706001361

Shop around as the prices vary, i got my humaria at £745 from [email protected], but central health care quoted £810

Cath, 
Good luck, hope last nite gig gig was fun!!, at least it would help the embs, Yes it is good to do everything for the fun of it, you never know!
I feel this time would be it for you,
Good luck my immune SIS!!!

Sprinkle
I think sarah is going for LIT 3, just a booster as she has had 2 already

Donkey
I have never heard of Level 3!!, 
In level 2 tests you do LAD, and if it is low or negative then you do LIT to improve it, so LIT is the treatment for low LAD
You would get your head round it with time!!!

Sarah
Good luck with your stimulation.
Please get the next few LIT dates from Dr T, for the girls who would be going soon, see you monday in the ivig room!!

Sprinkle
I think you should arrange your LIT sooner, I think the next one after the 11th Aug, should be the 25th Aug, then 4wks after another LIT
The sooner the better, so that you can recheck your level before your treatment. The LIT stays in your system for a year so it is ok to have it now

If you are having IVIG or intralipds, it is good to take, something to drink,and eat.
Also your I pod, or a book to read as it can be quite boring sitting there alone for hours.
You can move with the drip to the toilet and back, and carisa, checks and writes your blood pressure and if you need her she is next door or you can phone her with your mobile phone, as she is just next door!!, if you don't want to get up


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## lalaby123 (Sep 21, 2008)

hi ladies, just a quickie as I am in pain and can't sit down
had a laparoscopy scheduled yesterday following the recommendations of the clever Lister clinic to check for any scarring around my tubes before i start any treatment in future...
my plan was to do the lap just to tick the box as knew the tubes are open from Hycosy an didn't think anything would be wrong and then do immune testing with Dr G and then decide on plan forward..... anyway i came out the theatre with a huge swollen abdomen and an extra cut so i knew they had found something...it turns out i had lots of scarring but luckily not touching my reproductive organs which they cut out and also much to my surprise mild endometriosis....
i don't understand why no previous doctor had recommended i have a laporoscopy it could have saved me the last 2 years of trying as apparently endo can interfere with fertility and much to my horror i read in Dr Beer's book that it causes high TNF-alpha = humira which is what i was dreading the most....
anyway glad i am seeing Dr Gorgy on monday not sure how i will manage the 3.5 drive down and back as feeling very sore but i need to have that consultations asap.....i am glad that i am no longer Unexplained but think its all getting really complicated and feel like throwing in the towel before i have even started......

Cath great news you are ok and hope you have a great transfer
hi to everyone else
shame my appointment on monday is at 9am otherwise i could have seen some you there by the sounds of things!
xxx


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## twinkle123 (Mar 1, 2008)

Thanks for that info Choice.  You're such a fountain of knowledge on this thread - it's great to have someone who knows their stuff!!!    I don't have access to a fax so was just going to ask them to post up the results.  Seeing as I'm there on Tuesday though, I didn't bother. I've never heard of Healthcare at Home but will make that my mission today to find out! 

Lalaby - saw your post on the Unexplained thread.  Good news that they found a reason now but maybe not the news you were wanting to hear. Hope you feel better soon.  

For those of you who live in London, how's the weather just now?  Just trying to work out what to pack with me to travel down tomorrow.  It's warm here so I'm guessing it's pretty hot down there.  

Have a nice day everyone
Susan
x


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## lalaby123 (Sep 21, 2008)

thanks Susan P good luck with your results with Dr G xxx


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## Choice4 (Aug 14, 2008)

Susan don't forget to get seperate prescriptions from dr g as if u are using [email protected] you wld have 2 post it 2 them they wld send a nurse 2 ur house for the ivig or inyralipds, weather here is fine
Lalby I hope u feel better soon I think after lap. You need time to recover so please take time off u can still see dr g latter


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## Donkey (Nov 24, 2007)

Morning

Lalaby hope you feel better soon  

Choice thank you for the info, I told you I was confused - i thought I had heard of level 3 tests.  I've decided you should be nominated for an MBE or something for services to infertility and FF  

Cath good luck again

Enjoy the sunshine everyone

Donkey xx


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## Choice4 (Aug 14, 2008)

Cath
Don't forget to eat some fresh pinaple today and 2morow, and some brazil nuts
I heard it helps , anything that would help why not


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## Kiwi_in_uk (May 25, 2009)

Hi all

I've went to see Mr Gorgy after 3 m/c to find out what might be the problem.  He looked at my Thrombophelia tests done on the NHS and said that there were some issues and that he needs a ton of other tests done before he can assess what to do next.  Which is fair enough.

However, I'm itching like crazy to get cracking on my next tx and wondered what happens from here.  Assuming the results arrive before my cycle then what have you experienced as next steps?  Just wanting an idea of whether I am going to have to wait again and fret about yet another lost opportunity.

Going slightly mad here.

Thanks
Kiwi


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## karen (Mar 23, 2002)

Kiwi - someone more knowledgeable will come to advise you soon I'm sure - they must be all in the sunshine!

Girls - does anyone know how to minimise / prevent the clexane bruising?

xx


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## Maarias (May 4, 2005)

Karen,
I was told to not rub the site of the injection after stabbing. However, have to set I still get occasional bruising!
Mx


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## Choice4 (Aug 14, 2008)

Karen
For clexaine, pinch the skin, inject slowly, remove needle slowly and don't rub the area, always inject in the area where you have more fat!!

Kiwi
Welcome on board, when did you have your blood tests with Dr G?
The results should be back after 10days to 2wks.
When the results are back you can call and arrange a phone review or you go in person £90, to discuss the results and the way forward
(It is better to go in person if you can, so you get a face to face discussion,)
He would give you a copy of the result and highlight the important bits,
( he can also fax you a copy if you want)

1. If TNF is high you may need humaria ( after TB test) , take 1 humaria wait 2wks then the next, then retest after 2wks

2. If LAD negative or low, you would need LIT, for that you would have to go to greece, 1st LIT then wait 4wks , then 2nd LIT, then wait 4wks and retest

3. If NK cells high ,you would need IVIG or intralipids infusion 7-10 days before transfer

Other things that may be added to your mix may include, steriod, clexaine, asprin, high dose folic acid etc

My advice is to wait for your results, do recommended treatment before cycling
I hope this helps!!


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## Cath34 (Oct 14, 2008)

Hi girls, well I am officially PUPO!!! 
ET was much better than any previous ET I have had, Dr G was so very careful, methodical and slow which I found so reassuring. I didn't feel a thing (after the speculum!!)
We spoke with the embryologist  and our transfer was at 12noon and so they had already scored the blasts earlier. I was an eager beaver to  find out how many had made it to blast and indeed what their scores were. I had a 3BB and a 2BB transfered which I was gutted about as previously had 4AB's!!!! He quickly told me that he tends to under score as opposed to some clinics and that they would probably be 4BB if I had had a 3pm ET as they change so quickly!! I could see that straight away as all previous ET have been after 2pm so I guess I should be happy with that. He reassured me that BB was very good and he was happy so its all in the hands of the Gods now I guess.
Out of the other 5 I think 3 were almost blast but not quite there by today so he's going to check them tomorrow and see if they are ok to freeze.
Sorry about the long post but I just had to get it all out!!!
Choice - thanks for the pineapple tip, I have fresh juice and Brazils. Ive been told no caffine?? I love tea though, what do you think ladies? Apparently decaff tea is bad for you in the way its processed?!!
Sarah, - you have a busy week coming up hun, I really hope things go smoothly and well for you.
Karen, it was lovely to meet you today. Best of luck for this cycle. Sounds like you have a fair no of eggs there. Fingers crossed.
Good luck to evryone else with appointments next week.
Carissa was so lovely today, she wished me all the very best bless her. 
Now for the loopy 2WW for me  xx


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## Choice4 (Aug 14, 2008)

Cath
Yeh yeh, I am happy all went well today, keep your body warm, and rest as much as you can. Positive thinking all the way.
If any sign of flu, sorethroat or fever, increase dose!!
Avoid coffee, tea, decaff, drink warm water, it is only for 2wks ( or before heh!!), you can do it, more brazil nuts and pinapple
I would be praying for you!! for the gift of motherhood! Amen


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## Cath34 (Oct 14, 2008)

Thank you Choice. I think I may up my pred to 40mg from tomorrow for 3 days, see how I feel.


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## twinkle123 (Mar 1, 2008)

Congratulations on being PUPO Cath. Will be keeping my fingers crossed for you.    
Flying down to London tomorrow, spending a day there on Monday and have my follow-up appointment with Dr G on Tuesday.  Looking forward to finding out what he's come up with. 

Will be back on here on Wendesday to let you know how it went (and to get someone to explain in easy words what it all means!)  
Susan
x


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## Cath34 (Oct 14, 2008)

Good luck with that Susan, make sure you leave his office understanding your results even if you have to ask him to spell it out for you. I found him quite difficult to understand initially but I'm tuned into him by now!!!!! He really is lovely and the more you see him the more it becomes clearer. He actually has a great sense of humour! Choice and I have witnessed this.  
Hope to hear all your news on Weds. I need plenty of people to post on here to keep me busy for 2 weeks!!!!!!!!!
I'm so tired now, I need to head off to bed as I didn't sleep at all last night!! Plus 5 hrs home!!
I stayed in the Marleybone Hotel really close to clinic and it was really really nice and modern. Thanks Super9 for that.


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## sarahh (May 20, 2006)

Congrats Cath you PUPO girl!  Now embies, you just listen to us, you hold on in there snuggle down and bed in for the next 9 months ... go on you know you want to ......   

A sleepless night for you eh Cath (after Choice's suggestion of .... well we all know what..... )?? He he   

I have no idea what the  BB / AB thing or scoring means as we've never had blasts so that really did sound like foreign language to me!  

Sprinkles - yes my 3rd LIT and I've already started stimms so really bad timing tbh as I'm now going to have to postpone taking Pred or taking it early against Dr T's advice which is obviously not a good idea.  How did this happen to me?? !!! Arghhhhh  

Susan - good luck on Tues.  Hope your results don't throw up too many issues. 

Choice - look forward to seeing you Monday.  When is your ET planned for then?  Hope you will be able to advise me what treatment to do & when when I see you   

My stimms were ok last night & tonight - back into the swing of things!  Just like riding a bike eh girls?   But I've never done Gestone & Clexane before so dreading those.  

Right girls, sorry to everyone i missed but really tired so off to bed.  

Sarah x


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## lalaby123 (Sep 21, 2008)

Cath so glad you transfer went well, keeping fingers and toes crossed for you, take it easy next 2 weeks xxx


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## Choice4 (Aug 14, 2008)

Cath
Here are all your questions answered during 2WW
see link
http://www.fertilityfriends.co.uk/forum/index.php?topic=87948.0

Sarah
Would see you on monday,Write down all the questions you would like us to discuss
I may be late, I am always late anyway!!!, but Dr G is used to me now!!!

Susan
I think you should buy yourself a small fax machine !!( with scanner and photocopy) as there may be more blood tests results coming from Dr G, that you would need, don't wait for the post man, as postman pat, may be on strike for ever!!!


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## Cath34 (Oct 14, 2008)

Thanks for the link Choice. 
Sarah - thanks for your comments, very appreciated. I hope I can get some implantation this time. I'm lying on the sofa not lifting a finger!!   Trying to give them the best chance especially after all the walking I did yesterday!!! I will be thinking of you this week on your marathon journey. So when will you start pred? After EC? I'm sure you and Choice will have a good chat tomorrow, time does actually go quite quickly, unless like Choice you have 4 bottles of IVIG!!!  xx


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## Choice4 (Aug 14, 2008)

Yep 4bottles and 2more on monday
I am setting the record heh


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## Cath34 (Oct 14, 2008)

Thought so Choice, I really hope it works for you. What are you NK'S then to warrant 40mg IVIG? X2? 
Mine are really high at 34% and he only wanted to give me 24mg x2 and I threw in an Intralipids on day of ET (yesterday)
I really hope thats enough?

Toffee, Dr G wanted to see me quite often really. I started stimms on Weds and he wanted my bloods on the Fri (I had done locally and result phoned through to him.) I had scan and blood with him Mon, Weds and Fri and Sat that week EC on the Mon. My oestrogen level was very high and I think thats the reason he wanted to monitor me so much incase of hyperstimultion. Although Sarah is stimming now too and is going to him M,W,F, next week also.
Good luck with stimms. xx


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## Pinpin (Nov 4, 2008)

Hi everyone

Cath - congrats on being PUPO   i hope that your embies are settling well in their new home  

Choice - when are you starting?

We went to see Dr G yesterday to agree on plan of action. It went well, he really is a lovely Dr, very thoruough and he took once the again all the time needed to answer our many questions. I've finally agreed to take Humira after all. He explained to me that as my TNF levels are 50 it's very unlikely that my levels would come right down to below that of a "normal" person and that he really didn't believe I would be anymore at risk of swine flu/complications by taking it. So all ordered from Tesco pharmacy and should get my first injection tomorrow night (DH will do it but i'm soooo scared of needles  )
So I'm having 1 injection tomorrow night and then another on 24/08 and then retest on 02/09 and if levels haven't come down or if they've gone up I'll have a further 2 injections before I start stimming on 30/09. He said he expects my levels to come down but even if they don't then with IVIG can still go ahead as i will still get some benefit apparently...
Also re-LIT with Dr A I told him about all the bad reviews and he said he had heard about this and that he believes Dr A and Portland hospital know what they do and that fainting can happen and has sometimes happened to his own patients in the waiting room so not to worry too much as there is no other option for me right now due to no time to go to greece to get LIT before I start my NHS cycle. He said this was definitely the best option and that he does get some good successes with Dr A LIT. Now I spoke to Dr G I will go ahead and have the LIT with DR A anyway no other choice...

He was very encouraging by saying that by coming to see him before our first IVF go we were doing the right thing and the thing that everyone would be doing in 5-10 years time and by then would be much less expensive...
I would love to be an example to show that by going down the immune road straight away you can cut to the chase and be successful  

Lalaby - I hope you feel better and good luck with your appt next week. I am now wondering whether i should have been having a laparoscopy too as my TNFa are very high !

Susan - good luck for your appt on tuesday too.


Pinpin x


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## Kiwi_in_uk (May 25, 2009)

Hi All

Thanks for the advice Choice4.  I'll try to be very patient and wait for the results, hopefully it will be something simple like take Heparin and I'll be up up and away!  

I'm getting my bloods done in the next few days - I also wondered if there was anything I should not eat or do such as have unprotected sex before getting the bloods done.  Its probably me being silly but I wondered whether anything you ate or did a few days before getting the bloods done could impact on your results (ie temporarily shift the results from what might be the norm?).

Good luck to all on tx and I hope its a big success for you!

Thanks!
Kiwi


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## Cozy (Jul 17, 2008)

Hi everyone,

after reading the posts on here, speaking to Dr Gorgy and looking at the costs of treatment I have decided to go to Athens for donor LIT with Dr Tsagaris.

I have emailed asking for appts on 22nd Sept and 20th Oct, though I haven't yet had a reply. Is anyone else planning on going then that wouldnt mind a travel buddy?

My DH is more than happy to come along and I am more than happy for him to come, but I am thinking of the cost of it all and would rather put his airfare towards the cost of the LIT. Though I would prefer not to travel on my own.

I am planning on flying from either Stansted or Luton on Monday 21st and returning on Tuesday 22nd Sept, as the flights from Manchester are expensive.

If anyone will be going on their own and are happy to meet up, please let me know

Thanks


Cozy


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## Cath34 (Oct 14, 2008)

Just want to wish Sarah good luck for your scan tomorrow. I hope you have lots of juicy follies growing nicely.    Got everything crossed for you hun. 

Choice - good luck to you too for your IVIG (not that you need it, you're a pro!)

Hi to everyone else.


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## Sprinkles (Nov 6, 2008)

Evening ladies

Cath ~ congrats on being PUPO take it easy, have everything crossed for you.

sarahh ~ good luck with the stimming and hope everything works out do you retest your LAD levels before ET?

Well after a week back off my hols its time to get rid of this spare tyre I've developed since starting tx so that at least I can allow for a little more growth before next tx if stimming.  So veggies, salad and fruit for me for next few weeks.


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## Cath34 (Oct 14, 2008)

I know what you mean, I have gained weight big time this cycle and every cycle really. A stone in all I reckon!! The steroids have blown me up like a balloon and its no joke so I'm trying to eat veggies but my body wants stodge!!!


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## Sprinkles (Nov 6, 2008)

I think you're entitled to stodge during 2ww Cath, so maybe a salad here and an eclair there wont do any harm


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## Cath34 (Oct 14, 2008)

Morning Ladies  
I am guessing that Choice you are already hooked up to IVIG in Dr G's? 
Sarah, you I'm sure are on your way there also.Let me know how you get on. Is the weather good down there? Is pouring with rain in Wales!!!!!!!!
I'm just about to have boiled eggs for breakfast. Here goes the munching- again   Then time to take all my meds!!!!!!!! I did up my pred Choice yesterday to 40mg, I think I will do it until Weds, dyou think?

Karen- when are you having a scan next? I hope all is well with your follies?
Hi to everyone else xx


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## Choice4 (Aug 14, 2008)

Yes I.am hook on to ivig
Saw sarah we had a 
good chat ,we are 2 here now hooked up 
So I have company today


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## Choice4 (Aug 14, 2008)

If you on clexaine don't forget to take calcium tablets to help prevent osteoporosis


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## Choice4 (Aug 14, 2008)

We are 3 now hooked on
Me,karen and another lady


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## lalaby123 (Sep 21, 2008)

Hi girls

just wanted to say a thank you to all you girls on here as we saw Dr Gorgy today and he was very nice... if it wasn't for Choice, Cozy and all the other girls here I would not have heard of him 

he said my thyroid antibodies, one miscarriage, infertility for 2.5 years and recent discovery of endo all point towards immune disorders so he ordered the full blood work which we did and now waiting for the dreaded results....I am so terrified of what is to come all the medication and the injections but the only thing that gives me a push is the fact that all you women are going through it with such endurance and bravery and that puts me to shame and makes me persevere...

hope choice and sarah and 3rd lady's sessions went well today with no side effects 
hope Cath's little ones are doing well  
hi to everyone else
xxx


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## Choice4 (Aug 14, 2008)

Hi
Just back from my intralipids marathon, my advice is to take somthing to eat or drink.
Dr G has also got a toilet in the intralipids room, so you don't need to go far to the outside Loo!!

Cozy
I am happy you were comfortable with Dr G, he is really nice if you get to know him
Don't worry about the result, because there is treatment for whatever happens

Cath hope you are doing well relaxing eh!!

Some girls are doing quite well, with the stimulation, folicle etc, but they find it a bit stressful when we keep asking about the follicle numbers ,sizes, EC, ET.
So it may be advisable to, not to ask, until tey decide to post whatever information they want us to no.
This is to avoid  putting them under pressure!!


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## Cath34 (Oct 14, 2008)

Glad you all managed to have a good chat in the back room today - its good to talk  
So Choice are you ready to fly tomorrow? Tell me again where you are going in the USA?

I spoke with Eleanor today and I am sooooooo happy as she told me that she has frozen 2 blasts for me grade both 4BB!! 
I was speechless as I wasn't expecting any tbh. She said they were very good blasts and I then made an immediate comparison that the 2 frozen were better than the 2 transferred?!!! She quickly told me that remember I had a 12pm ET and had it been 4pm they prob would have been a 4BB not 3BB by then and not to worry as they keep on growing. I knew this of course but cant help thinking, I just needed her to re assure me I think. Anyway, 2 in the freezer and another 2 blasts in Cardiff but hopefully I wont be needing them!!!!!!! 
    hard that this is my time and I get my 1st bfp soon. xx

How is everyone doing today? Sarah are you ok hun?


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## Sprinkles (Nov 6, 2008)

Fantastic news on your frozen blasts Cath thats great, but as you say hopefully you wont need them.

Apologies if I've asked stressful questions I am conscious that I do ask a lot of questions so apologies.

Hope everyone is doing well, off to make my dinner, catch up later ladies


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## Choice4 (Aug 14, 2008)

Sprinkle
I am not talking about you, it is just that some girls want to keep thing quite initially until further notice
I am not talking about anyone here but i am warning people before hand, that all girls

Cath
Yeh Yeh, 2 frozen blast, wonderful, after this baby, you may want one or 2more eh!!

I am of to SIRM Newyork!!

If you have had humaria, and felt ill, I learnt today that, if you have intralipids soon after humaria, you would feel better, so it looks like intralipds, may work with humaria, you never know!!!


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## Sprinkles (Nov 6, 2008)

No worries

Good luck in New York Choice everything crossed for you x


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## Cath34 (Oct 14, 2008)

Good luck Choice, I hope you have a safe journey over tomorrow. Keep us posted on when your ET will be. I will have everything crossed for you my dear.   

Sarah - Have a safe and successful trip tomorrow to Greece. I will be thinking of you throughout the day. Just remember it will be worth it for the bfp at the end. You're nearly there now hun.


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## Donkey (Nov 24, 2007)

Great news Cath, let's hope you don't need the frosties  

Good luck in NY Choice

Sarah, good luck in Greece

Night
Donkey xx


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## karen (Mar 23, 2002)

Choice lovely to meet you yesterday! Hope all goes well in NY and looking forward to your mirror in the bathroom at Dr G's!


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## Choice4 (Aug 14, 2008)

Thanks I am on the plane now


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## lalaby123 (Sep 21, 2008)

Choice good luck with SIRM at New York....keep us posted xx


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## Choice4 (Aug 14, 2008)

Sure girls I would keep you all posted
Good luck all I hope to hear good news from all of you when.I get back


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## Cath34 (Oct 14, 2008)

On the plane and on ff at the same time!!!!  You are mad.


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## karen (Mar 23, 2002)

Or addicted!


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## karen (Mar 23, 2002)

How are you feeling Cath? What are you up to?


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## Cath34 (Oct 14, 2008)

I'm not too bad thanks. Got quite a bit of abdominal pain still and my bum muscles are killing me from the gestone!!!
How are your stimms going?


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## Tokii (Feb 20, 2007)

Hi Girls,

I don't know if anyone has had a cancelled tx before, I'm stimming with Dr G, estrogen levels were alright till saturday went back on Monday to have IVIG, scan and blood test only to find out that my estrogen level has gone down from region of 6000 to 4000 and my progesterone level had gone up from 0.3 to 9, upped my merional yesterday and did another test today. The results came back another estrogen is 4600 and progesterone is 40, lining is abt 8.8 and the eggs are still there abt 12 follicles in total. I don't know what happened btw saturday and monday.

I've got two options
1. is to carry on and freeze the eggs and have a FET
2. is to stop now and take pregnyl tonight.

Has this happened to anyone, DH is in his shell and not really saying anything, i have spent 14k, had LITs, intralipid, IVIG. I don't know what to do now. Pls advice anyone.


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## Cath34 (Oct 14, 2008)

Choice - I hope you have arrived safely in NY? I'm guessing you have landed by now as its about 6 hrs unless you didn't fly direct.
Wishing you all the best hun for this ET. I reckon its gonna be perfect for you.  

Sarah - you will be almost ready to land I reckon from Athens. (If you flew on BA that is) Been thinking about you all day. You will be knackered but make sure you rest tomorrow. Are you needed for a scan with Dr G? If so, best of luck, ring me when you get a chance.  

Karen - hope you are on schedule for EC. Good luck.
Hi to everyone else. xx


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## Choice4 (Aug 14, 2008)

Hi All
Greetings from Newyork, I arrived safe here
(from the FF addict!!!)
Phase 11 of the TTC to continue from tomorrow,
(May not be on this site that often)

Sarah hope all went well in greece

Cath i hope your pain should start getting better soon, we need to keep any eye out for implantation pain!!

Tokii
Sorry to hear of your E2 level, if it is me i would freeze instead of cancelling the cycle
Someone had a similar issue and posted on Dr Sher's site, E2 came down then went up
See link to post, you have spent a lot of money so don't waste these eggs
http://forums.haveababy.com/index.php?showtopic=40152

/links


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## Pinpin (Nov 4, 2008)

KIWI - good luck with the testing - i hope this will bring you some answers

Cozy - I would have definitely come with you to greece had my NHS cycle not started end of september i could have planned to have my LIT done in greece too with donor blood! I would have even offered to be yours if you needed. Due to my NHS cycle starting soon I have no real other option but to get the LIT done with Dr Armstrong during stimms   I feel we are doing everything we can in the short time we have until i start stimming and Dr G thinks it is enough time to get some good results I just   it will all be enough.

Sprinkle - I hope the post hols diet is going well  

Lalaby - don't be afraid of what the results might show (like you I was scared) but Dr G explained there is a treatment for each of the markers they are testing. I agree with you that the drugs sound scary but the results are there to show that it works for many of the ladies who have had the treatment

Cath - I hope you're feeling great - what wonderful news about your frozen blasts  

Sarah - i hope it all went well in greece !

Choice - I wish you all the very best of luck with the next stages of the treatment in NY. Keep us posted! You are well and truely doing everything you could possibly do in the best places. Have you thought about becoming a Fertility specialist once you are a mum? I'll be your first patient ! I have everything crossed for you.

As for me well I should have had my first humira shot on monday night but was let down but Tesco's pharmacy and had to go through Fazeley who didn't have the med in stock and will receive it today and send it to me on next day delivery so should get my first shot tomorrow (4 days late on an already very tight schedule!). I think ill do my second shot 12 days later instead of the recommended 2 weeks otherwise i will miss the following week's wednesday's retest !  
Can anyone tell me if you think starting humira 6-7 weeks before start of stimming will really give enough time to reduce my TNFa. I read that some people don't see the effect until 12 weeks and need 6 shots rather than 4.  

Hi to everyone else 

Pinpin x


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## Cozy (Jul 17, 2008)

Hello Ladies,

Pinpin, thats the problem with NHS cycles they are quite rigid. Though I wish I could have had a free cycle or two. At least you are getting some treatment done with PA and I'm sure it will help you. Is it just the LIT you need to have now?

Cath, I hope your   is feeling a bit better today. I found the gestone shots painful while it was being done but ok after that. Are you doing it yourself or DH doing it? I hope your abdominal pains have gone and hope its implantation  

Sarah, Hope all went well in Athens yesterday and you arrived home safely. Thanks for booking my appt.  

Choice. I hope you trip to the Big Apple does the trick for you and it all goes well.   

Lalaby, when are you due your test results back? Mine were back after 9 days. hope you're ok.

Sprinkles, I hope the diet is going well. I'm off to Boots this morning to see about Alli tablets. A friend of mine lost aout 1 stone in 3 weeks on that and I desparately need to loose some weight before my next cycle.


Cozy


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## Cath34 (Oct 14, 2008)

Morning ladies - well miraculously my lower ab pains have gone!!!! What was that all about 
Cyclogest still giving me horrendous bad tummy and wind though in the middle of the night - oh joy!!! Never mind I really dont mind if I get a BFP!!

Choice - great to hear you are in the big apple safely. If I was there I would need a plane of my own to carry all the shopping!!  Heaven forbid if I was pg I would spend a fortune  

Sarah - how are you hunni? Tired I'm sure. xx 

Cozy - Alli - sounds good, dont think I'll try it at the mo but its good to know it works for some. 

Karen - when is you EC, is it tomorrow? 
Hi to everyone else. xx


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## karen (Mar 23, 2002)

Morning all,

Cath the pains and the wind are all unfortunately another of the crosses we bear  but the gestone is the killer as you say. Are you on cyclogest and gestone? Wind and pain - lots of sympathies.

Tokii - I feel so bad for you I'd been wondering how you got on. What does Dr G recommend? My worry would be if I (and he) didnt know why the results had gone haywire then I'd be scared to carry on and risk all. Like choice says I'd prob freeze the eggs and use them for a "perfect" hormone try. As you say the LIT stays in your system for along time so that isnt wasted - only the ivig would need repeating. Have you posted your question on the main board? I have heard of this happening before so someone somewhere should be able to help. I'm so sorry this has happened - you were stunningly calm about it when I saw you.

Choice - good luck!

xx


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## superted (Sep 21, 2004)

Hi Girls

Just poppihg on to wish Cath good luck in 2ww I hated the cyclogest and the gestone and thankfully no more gestone for me now!

Choice - wow you are in US good luck it has come round quickly.

Hi to everyone else good luck with test results.  You are in good hands with DR G he will come up with a plan of action.

superted x


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## sarahh (May 20, 2006)

Hi girls, quick post from me.  Back safe & sound from Athens.  A trip I'd rather not repeat again but I'm back home so that is all that matters!!! 

Choice - Good luck in NYC!!  Hope you manage to relax a bit while you are there & maybe even get a bit of shopping in!    

What is with the mirror comment then - I've been thinking that Dr G def needs a mirror in his toilet - us girls like to make sure we look our best as we climb up on that bed, legs akimbo       

Scan & bloods again tomorrow. 

Tokki - so so sorry to hear about your E2 levels    I guess you must have made a decision about what to do by now.  Sorry this cycle has not gone as planned.  B********* hormones eh? 

Must dash, got a million & one things to do while I have a spare nanosecond!  

Sarah x


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## sarahh (May 20, 2006)

Cozy - sorry forgot to say, I booked appt for 22 Sept.  He said he'll speak to you about 2nd appt when you go??  Your name is down in the all important appointment book (a small diary with names written in pencil  ) although you were initially down as me, then as part me (my first name, your surname) but think they got it right in the end!!!  Said you wanted a donor.  

Sarah x


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## siheilwli (Jan 18, 2006)

Wow, got my results back on Monday, head still spinning with all this stuff!!!! 
This was my results:
NK ASSAY (% KILLED) PANEL
50:1                                  13.9
25:1                                  8.7
12.5:1                                6.5 
IgG conc 12.5 50.1            7.5
IgG conc 12.5 25:1            7.6
IgG conc 6.25 50:1            8.3
IgG conc 6.25 25:1            9.2 

% CD3                              85.8*
% CD19                            1.6 
% CD56                            13.1
% of CD19+cells, CD5+    43.8***

NK assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml 13.7
25:1 w/Intralipid 1.5 mg/ml 9.1
So will definitely need IVIG rather than Intralipid

LEUKOCYTE ANTIBODY DETECTION
Flowcytometry Negative
(Tcells) IgM+ 7.8
(Tcells) IgG+ 2.9* 
(Bcells) IgM+ 13.9
(Bcells) IgG+ 7.3 *

Factor II Mutation prothrombin Factor II G20210A Negative
Factor V (leiden) Factor V G1691A mutation POSITIVE***
MTHFR gene mutation - MTHFR C677T mutation Negative

TH1:TH2 INTRACELLULAR CYTOKINE RATIOS
TNF -a:IL-10 (CD3-CD4+) 48.6***
IFN-g:IL-10 (CD3-CD4+) 31.1*** 


Now then, can anyone help me with a few questions.  
Been told I need LIT, Humeira, will also be on baby aspirin, clexane, pred. Have been phoning around (local independent pharmacists who's been very helpful in the past, a friend of the family who's a pharmacist, healthcare at home) to get a cost quote for humira. Have had my TB test and will get that result tomorrow.  
Anyone else doing these treatments that could let me know what to expect?
Anyone RECENTLY got prices for humira - how much did you pay?
LIT - anyone know how much it costs in Greece - I've been told that PA is about £1100?
And lastly, how much does it cost to do a full cycle with Gorgy (excluding drugs)? 

thanks
Cat


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## Tokii (Feb 20, 2007)

Cat, I got Humira in July and it was £759.90 if paying with credit card and £745 if paying with debit card. if ICSI price is 2900 and you need E2 bloods done every 2 days which costs £35, with LH and progesterone done towards end of stimms both cost £35 respectively. Your scans is all been included in the IVF/ICSI so don't really need to pay for that. Intralipids is £350 and IVIG depending on what you weigh if above 75kg you will end up paying £1500 if you weigh below that £1200 

Karen, i'm calm when I'm outside but not so calm behind closed doors, my oestrogen level is up to 14000 and progesterone abt 100, how crazy is that. Are you in tomorrow? 

Sarah, might be seeing you tomorrow as I need to pick some consent forms for EC, my trigger injection is tonight and EC is friday, with all the talks of jinxing myself now it's all out. I might persuade Dr G to freeze my embies on day 3.

Anyway All the best everyone.


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## siheilwli (Jan 18, 2006)

Thanks Tokii that's really really useful to know... yes I'm trying to crash diet to get below 75K!!!!! Intralipid won't do it for me unfortunately! Good luck with trigger. 
C
x


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## sarahh (May 20, 2006)

Tokii - am in to 11.30am tomorrow for scan etc.  

I am getting really confused with Dr G as I had a bill the other day for my icsi and an E2 blood test totalling £3040.  So that means he charged £3k for the icsi and £40 for the E2.  Tokii - you said £2900 for ICSI (as listed on his site) and £35 for E2.  Is that def what you have been charged cos if it is I'm going to have to ask him?  

Cat - husband lit or if you bring your own screened donor it costs 500 Euros; if you want him to provide a donor it is 600 Euros (I think or maybe 650).  Then obviously your flight.  I got a flight yesterday from Heathrow at 6.15am with BA and home 19.05 for £250.  Dr Tsagaris is not easy to contact so if you think you want to go start pestering him asap!  Yesterday he seemed to suggest clinic is full on 25 August as he said next date is 8 Sept.  Cozy is going out on 22 Sept.  

Must go, I'm having a very early night. 

Sarah x


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## twinkle123 (Mar 1, 2008)

Hi everyone.

I've posted this on the immunology board too so apologies if you read it twice! 

I'm in the same boat as you Cat so can't answer any of your questions - sorry.  Lots of results and numbers and no idea what they all mean!!!

Got my blood tests back from Dr Gorgy on Monday but unfortunately am still very confused.
I've been told I'll need clexane, prednisolone, gestone and IVIg.  He's scribbled a note of what I need to get.  Any advice on the best place and do I need to go to my GP first to get an offical prescription?  How do I know what needles and syringes to get or will a chemist know what to give me?  I'm just so confused about it all!    Because I've got a heart murmer, I'm very paranoid about what medication I take.  I did tell Dr G but I'm not sure if he took it into consideration.  Even being told to take aspirin is sending me into a jibbering wreck - I've always been told to avoid it as I have asthma but Dr G said it would be no problem.

Here are my results:
NK ASSAY (% KILLED) PANEL
50:1                              23.3
25:1                              21.2
12.5:1                           14.3
IgG conc 12.5 50.1          19.1
IgG conc 12.5 25:1          15.8
IgG conc 6.25 50:1          19.1
IgG conc 6.25 25:1          15.8 

% CD3                            94.2
% CD19                            1.4 
% CD56                            4.5
% of CD19+cells, CD5+      35.7

NK assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml   23.3
25:1 w/Intralipid 1.5 mg/ml  13.5

LEUKOCYTE ANTIBODY DETECTION
Flowcytometry Negative
(Tcells) IgM+                    24.5
(Tcells) IgG+                    28.3 
(Bcells) IgM+                    40.0
(Bcells) IgG+                     74.5

TH1:TH2 INTRACELLULAR CYTOKINE RATIOS
TNF -a:IL-10 (CD3-CD4+)    25.1
IFN-g:IL-10 (CD3-CD4+)      13.1

Factor II Mutation prothrombin Factor II G20210A Negative
Factor V (Leiden) Factor V G1691A mutation Negative
MTHFR gene mutation - MTHFR C677T mutation Negative

Any words of wisdom? 
Susan
x


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## sarahh (May 20, 2006)

Oops, sorry, just checked my bill again - forgot the HFEA fee so I was charged the same as you Tokii!!! 

Sarah x


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## Tokii (Feb 20, 2007)

Sarahh,    good thing you checked, the unevitable HFEA fee.

susan_p i got all of mine from Ali @ Shadwell re needles and syringes, will check and let you know the exact sizes, you'll need the green ones for mixing and a small one for injecting stimming injections. Prednisolone was £19.50 for 25mg for 40 tablets, clexane 20mg or 20ml £4 while clexane 40mg £5, don't know about gestone, will need that during FET. IVIg depends on your body weight, if you weigh less than 75kg you pay £1200, anything above 75kg you pay £1500. Lucky you, you don't need either LIT or humira.


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## twinkle123 (Mar 1, 2008)

Thanks Tokii. How does clexane come - is it like stimming injections where you get the tablet and vial of liquid?  Or is it a pre-filled needle? Really need to find out more about all of this!  
x


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## Sprinkles (Nov 6, 2008)

Hi ladies

Glad you arrived safe Choice, hope everything goes fab x

Sarahh ~ glad the trip to Greece went well hope it does its stuff

Pinpin ~ sorry cant help on the humira question not had it, hope first shot goes well

Cozy ~ what are Alli tablets?  Sorry if I’m being thick

Cath ~ glad the lower abs pains have gone take it easy mrs

hope everyone else is good x

Nothing much to report really just waiting for Monday's appointment then I can hopefully get results back quickly and get on with it, always feel bit better when I'm actually doing something rather than waiting, not the most patient of people.  

Has anyone had HRT/oestrogen as part of their previous cycles?  I'm wondering if I feel grumpy and quite snappy due to my dramatic reduction in oestrogen?  I was on double dosage during my last cycle, FET, and obviously stopped taking it when I got my BFN, but feel pre menstrual and have done for a good few days, in the respect of having quite a short fuse and wondered if it was because I had stopped taking the tablets?  Or could be just the way I feel.....


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## Tokii (Feb 20, 2007)

susan p, Clexane is a pre-filled syringe


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## Choice4 (Aug 14, 2008)

Hi Girls
Went for my appointment today, Lining is good but there is still fluid present.
The fluid was aspirated, would go back to check in a few days, The Dr says if the fliud does not go away they would have to cancel the FET.!!
Please I need the British and American army to fight this enemy ( the fliud)!!
I had the greek army fight LAD and it came up nicely,!!
So please fluid go away!!

Cath 
I am happy your pain has gone away, and you are taking things easy,
How many days post blast transfer does Dr G suggest testing?, does he do blood test or HPT!!

Sarah, 
I am happy your trip to greece went well, you may not have time to retest LAD, but i am sure your levels would come up

Tokii
Good luck with your egg collection Fri, yes it is better to freeze on day 3, so when thawing, you can go to blast or do day 3 transfer
It is difficult not to post when stimulating, so no jinxing!!

Siheiwli
Welcome on board, from your results
1.Your NK cells are high esp. CD3 and CD19 so you need Ivig or intralipids
It seems ivig works better for you but intralipids, still reduces it too

2. TNF is high so you need humaria, i got mine from healthcare at home at £745 for 2 prefilled syringe, you inject into your tummy 2wks apart.

3.Your LAD is low so you need LIT, is is better and easier to go to Greece and have donor LIT
See LIT link here

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

For clexaine, steriods, etc, you may want to take Dr G's prescription to your Gp and see what you can get on NHS prescription

Susan p
I am happy you have got your long awaited results

1. your LAD is quite good at 74.5, have you been pregnant before, or been and not know.
2. Nk cells are slightly high, ivig works better for you
3. TNF alpha is high so you need Humaria
If you are afraid of taking the meds with your heart murmur, it may be a good idea to put it past your cardiologist,
4. You don't have to take asprin, if you are going on cleaxine and you have asthma

You need to get a prescription from Dr G, then take it to your gp and see what you can get on NHs

Spinkle , high, you would be starting soon

Hi all others, it is 7.30 pm here!!


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## Cozy (Jul 17, 2008)

Hi Everyone

Choice, sorry to read about your fluid problem..... this is what we should do to your fluid    and shout at it to go away ...... I hope this helps a little and your FET is not cancelled    

Sprinkles, Alli tablets are diet pills. They prevent your body absorbing 1/3rd of the fat out of each meal, so are supposed to help you loose weight. I hope they work  

Cozy


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## Cath34 (Oct 14, 2008)

Oh Choice thats a pain in the  . This fluid really needs to bugger off. Has the doc said what the chances are of going ahead as planned? When is it planned for by the way. I really hope you dont have to cancel as you have gone through so much and travelled so much it must be so daunting for you. I am   hard for you, for all to go well and for ET to go ahead as planned. Keep us informed.

I'm glad my pain went yesterday morning as it was worrying me. No feelings today either. I'm waiting for this metallic taste everyone is talking about, but nothing   Dr G does a bhcg test to test levels so no need for hpt for me thank goodness. I will have to do it locally though and they ring them through to him. 

Sarah - good luck for scan today hun. Hope you find ZW after my directions!!!!  No it should be quite simple, If I can find it then I'm sure you will. xx

Hi to everyone else and hope all is well with everyone. x


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## bankie (Dec 27, 2007)

Sarahh - I got Dr T's details from Dr G via email yesterday, he has just referred me for donor LIT treatment with him and I would like to get started asap.  At the moment I only have an email address for Dr T, but as you said he is difficult to get hold of I'm wondering if I should call as well, as I would really like to get an appt for 8th Sept if possible.  Do you have his phone number that you could PM me?

Also, my mum has said that she may come out to Greece with me to keep me company.  I'm guessing there is a pretty high chance that we will have at least a partial DQ-Alpha match?  I would really prefer to have a known donor if I can arrange it - I guess I would have to have the blood test to confirm?

Thanks!

bankie


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## superted (Sep 21, 2004)

Hi Girls

Choice sorry to here about the fluid.  Sorry for being thick but how does this affect FET.  Where is it

Hi to eveyrone else hope you are all ok.

BIG ANNOUNCEMENT - DR G now had a mirror in the toilet - hurrahhhhhh        Man putting it up yesterday whilst I was having intralipids.

We can all now look even more beautiful for DR G facially not sure if we can check our other bits!!!!!     even though its a fair size mirror!!!!

Superted x


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## Choice4 (Aug 14, 2008)

Hi all
Thanks for the well wishes

I am happy Dr g, has now put up a mirror in the toilet, i have been on about it, and he promised to do it, Last time i told him that when i get my BFP the first present i would buy, for him is the toilet mirror, but he promised he would get it soon!!
Next hewould put a TV in the IVIG room!!

Cath 
hope you are doing well, i have not heard about this metalic taste, there are other easier signs to look out for!!, i get metalic taste when i take some antibiotics

Bankie,
Dr T's Numbers in greece  00302108993200, or 00306944513332

My advice is to use a different donor than your mum, as you want someone with a totally different genetic and DQ alpha make up, for the LIT to be more effective
I think your mum may have passed on a DQ alpha number to you as she is your mum!!

Superted
The fluid is the cavity, the same place as the lining, I heard it is toxic to the embryos, and it should not be there at all
In a layman's terms
"Imagine a coconut, with some coconut juice inside, they don't want the juice there so the coconut itself can thicken, and be a better environment for the embs to trive!!, if you get what i mean"

Hi to all others


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## bankie (Dec 27, 2007)

Hi Choice,

Thanks for the numbers - I will give Dr T a ring tomorrow, just hope he can fit me in soon.  Re. the donor thing, I was pretty sure that as you said my mum would be too genetically similar to me for it to work well, I'd just really rather not use an unknown donor.   Oh well, I guess if it gets me closer to a baby (   ) then I'll just have to do it!

Hope that all's going well with you in the US.


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## twinkle123 (Mar 1, 2008)

Well, well, well... went with DH to the nurse at my GPs surgery this morning to get our chromosone karyotyping blood test done.  Was taken 15 mintues late and then sat in her little room for a further 15 minutes while she tried to figure out what colour of vial she's supposed to use for the blood.  She ended up having to speak to several of the doctors before phoning some blood testing office somewhere to find out.  After all that, turns out it is the only coloured vial they don't keep in.  She's going to order some and give us a call when they arrive. Just typical seeing as I've been off on holiday for 6 weeks and I'm back next week so can't just go in any time to get it done.  Thankfully, we are both off just now and didn't take any time off work for today's appointment.  

Got a sore throat, all bunged up and sneezing a lot today.  Hope it's not swine-flu!!! One of my violin pupils came for a lesson yesterday and she said her dad had it a few weeks ago.  She seems okay but I suppose she could be carrying germs. 

On the plus side, it's probably better if I get it now before I start on my clexane, prednisolone and gestone.

Oh, there's always something to be worrying about!  

Susan
x


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## Pinpin (Nov 4, 2008)

Hi 

Susan and Shilwhili I'm glad you have now got your results and taking your first steps towards getting the right treatments. Susan I hope it's not swine flu  

Choice - i   that the fluid disappears 

Bankie - do you not have a good friend who could come along and be your donor?

Sarah - i hope your scan went well

Sprinkle - good with your results on monday 

As for me I had my first injection of Humira tonight. DH injectedme for the first time ever as I can't do it myself due to scared of needles. Not being a drama queen it really hurt when he injected the liquid and a hard bump appeared straight away and i'm worried wondering if this is normal  
He injected at the top of my thigh on the outside (the leaflet said at the front of thigh or in tummy but the problem is i hardly have any fat as i have quite a low BMI so decided that that probably was the fattier part of my body if you can call it that). Do you think the pain and bump came because we injected in the wrong place? Will it still be effective?  

Pinpin x


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## twinkle123 (Mar 1, 2008)

Pinpin - I've never had humira but I know with both my buserelin and stimming drugs, a bump has sometimes appeared.  Then, the next day there's been nothing. I'm sure it will still be effective - as long as it goes in, it'll do the job.  I don't know if it's the same, but I've always found the slower you inject, the less painful it is.
x


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## sarahh (May 20, 2006)

Pinpin - don't rub it in re: not having not much body fat!!!!  You can always have a bit of mine.....!!!!  
Can't answer your q about humira as I've not taken that. 

Choice hun, sorry that your fluid is still there.  Really hope it doesn't come back and you can go ahead with FET after all this tx & money   sending you some   and  .  

Cath - sorry missed you tonight; didn't go to Zita West in the end as in the clinic having the ivig for quite a while and decided I'd rather get home earlier rather than late.  

Bankie - you have a while before 8th Sept - I would hang on in there for a reply - you will get one eventually and it is a few wks away.  Good luck.  

Susan P -   you haven't got swine flu!  

Superted -   about the mirror.  I went rushing out to Carisa today and said "I love the mirror"!! Bet they have been having a bit of a laugh about it, her & Dr G!  And no, I would def struggle to see my bits up there - large tho the mirror is!!!!!!!!!  

And what about that huge bathroom in the back room - there is room for a bath & shower there - perhaps Dr G will need that when he gets busier - he can just live in the clinic then  

Tokii - good luck tomorrow hon, hope your travelling around today wasn't too bad and hope you have lots of nice eggies tomorrow despite not being able to use them this cycle     Lots of   

I had my scan today, all seems to be going well, prob another 5 days of stimms apparently.  Had ivig today too, intralipids on Saturday and another ivig on Monday    Hope the credit card is ready for yet more hits!!!!

Enough from me, hi to everyone else 

Sarah x


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## Cath34 (Oct 14, 2008)

Sarah - I'm so glad everything's going so well for you so far. I was wondering wht he's giving you IVIG x2 and Intralipids. I had the same but my NKS were soooooooo much higher than yours and I thought he was only going to give you IVIG x1? Did he say why?


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## dakota (Feb 6, 2007)

New home this way............http://www.fertilityfriends.co.uk/forum/index.php?topic=205278.msg3219407#msg3219407


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