# immune chatter



## kara76 (Dec 14, 2004)

I know a few of you are thinking of immune testing

there is so much on the net about it

i thought i would point you to this to start
http://www.rcog.org.uk/resources/Public/pdf/SAC_Paper_5.pdf

yes its against immune testing! but you must look at both sides, as far as i am aware IVF WALES do not suggest immune testing, they do sometimes suggest chromosome testing and clotting screen (eg level 1 tests)

Anyone who is thinking of immune testing think long and hard because a certain amount of it is a massive money making scheme-this of course is only my view

i have been up to liverpool for an endo biospy and i felt this was the best test for me, it takes cells from the right place and not circulating blood.

immune testing is highly expensive as is the treatment if IVIg etc is suggested. These drugs are NOT proven, there is a current trial going on in the US and the finding are due the start of 2009, if proof is found then fair enough

The doctor in liverpool told me not to waste my money of these until there is proof (i agree), some ladies are given more drugs than someone with a heart and lung transplant!

I have read and research loads and have my own views on this subject i suggest that you do the same.

Implantation failure is so hard to deal with, i for one hope and pray i have found the answer only time and more IVF will tell

so lets talk immune issues!!

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


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## Scouse (Aug 9, 2007)

Thanks Kara
As you know I'm going down this road..............after 3 failed ivf and no 'reason' for failure, i feel just carrying on without further investigation would be like throwing a further £10k down the drain!

I'm hoping to speak to someone at ivf wales before Nov 20th to see what invest (if any) they would likley do?  Going to see my own gp for thyroid tests and going to ring liverpool initially for nkcells biob but maybe for next cycle?

Will keep you informed on any news/ info X


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## kara76 (Dec 14, 2004)

let us know if you get to speak with anyone

i think they should look into things for you now


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## kara76 (Dec 14, 2004)

just thought i would mentioned that im freaking out about whether or not to go and have full immune testing, i have found a lab that will do it so i could save some money, but do i need to see a consultant first as no one will say over the phone what i need.....money scamming so and so's

so the plan is to get all the test name from a mate and then price them


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## miriam7 (Aug 8, 2007)

how come kara ...i thought you didnt need all of them ..whats changed you mind


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## kara76 (Dec 14, 2004)

im flapping big time

something is my head is saying leave no stone unturned before trying again

im scared what it might show and it would bumper my cycles up by 3k too and that after the testing, if i had the money i would do it at the drop of a hat even though im not a firm believer but they must be a reason


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## miriam7 (Aug 8, 2007)

i see what you mean ... i suppose if you explore every option then there will be no regrets ..it will pass the time too whilst your waiting ,its such a p off that it all costs so bloody much tho


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## kara76 (Dec 14, 2004)

if my nk cells came back fine i wouldn't even consider it


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## Cath34 (Oct 14, 2008)

How will you go about it Kara? Do you know what the costs are? I'm with you on this one, no stone left unturned and all that. Its all very draining though isn't it, let alone expensive!


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## kara76 (Dec 14, 2004)

im not sure there are a few ways

send bloods to chicago direct

go to a lab in london

go and see a con in london and get them to do it

its a nightmare of what to do


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## Cath34 (Oct 14, 2008)

The trouble is I guess there are clinics out there who will take your money no matter what. Is there anyone who can steer you in the right direction? Am I right in thinking that the full immune testing is more then just taking bloods? Sorry for sounding so thick


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## kara76 (Dec 14, 2004)

it is lots and lots of blood tests, the problem that make me wonder is none of it is proven


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## Cath34 (Oct 14, 2008)

Oh ok. I thought a blood transfusion was involved? I mentioned it to one of the nurses last cycle and she wasn't impressed. She told me there's no proof!! But reading Beer's book, there's no smoke without fire i reckon and the thig is we are all pretty desperate to try anything.


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## kara76 (Dec 14, 2004)

your thinking of IVIg which is a treatment for immune issues

now i know i have nk cells im scared steriod won't be enough, i just can't keep cycling without answers


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## Cath34 (Oct 14, 2008)

Ok so basically the bloods test for immune probs and if its proven the treatment to follow is IVIG?


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## kara76 (Dec 14, 2004)

not always

treatment could be steriod, ivig or humari or all!!!


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## popsi (Oct 11, 2007)

kara.. i cant offer advice as i know nothing about it hun, just wanted to tell you that you must go with what feels right for you, now what you think would be right.. heart not head honey xx thinking of you with these tough choices


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## kara76 (Dec 14, 2004)

thanks hun

they are a really hard choice and money is the main factor in all of this


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## miriam7 (Aug 8, 2007)

so confusing ... i wouldnt know where to start   if i win the lottery i will send you to chicago not just your blood


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## Cath34 (Oct 14, 2008)

God this is soooooooo confusing. Kara you seem to know so much hun  Good luck with your decisions. x


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## kara76 (Dec 14, 2004)

miriam7 said:


> so confusing ... i wouldnt know where to start  if i win the lottery i will send you to chicago not just your blood


i will take you up on that

yeah cath i read loads but im so confused


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## Cath34 (Oct 14, 2008)

Hi Kara, I'v just been looking up the differences between dexamethasone and Prednisolone on fertile thoughts website. There were quotes from Dr Beer saying that Dex should be used before pregnancy as it reduces the no of NK cells and that Pred should be used after around 5 weeks of preg and used for a longer period? But both help with category 1 & 2 immune issues! Does this make sense to you? I was wondering why you will be given pred and not dex the next time? Is there a logical reason why?


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## kara76 (Dec 14, 2004)

i know the reason why dr quenby uses prednislone

its doesn't cross the platcenta where dex does, dr beer prefers dex because the dose needed is a lot less

im really unsure of full immune testing, is it really worth paying tons of cash for a similar test!


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## Scouse (Aug 9, 2007)

Well ladies saw GP this morning and got good and not so good news!
Good news - all the tests for first level of immunology testing and the gp has organised them all to be done next week!  FREE OF CHARGE (don't get much free in this game!)
Not so good news - she refused to sign me off for next cycle of tx if I go up to liverpool!  So may see what liverpool can do (prob nothing) or just try a different gp or wait till I start and go in feeling 'ill'?


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## kara76 (Dec 14, 2004)

great about the level one tests hun

did she say she will sign you off once ill?

any news on the biospy?


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## miriam7 (Aug 8, 2007)

why wont she sign you off ...would she sign you off if you didnt go to liverpool? thats good getting the other tests  booked


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## ANDI68 (Aug 17, 2007)

That's awful Scouse, where is their thinking!!

What tests can GP do then?


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## kara76 (Dec 14, 2004)

gp's can do chromsome tests and also clotting screen


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## ANDI68 (Aug 17, 2007)

These are immune tests? 

I've had these at Clinic


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## Cath34 (Oct 14, 2008)

Kara  are you talking about the karyotype testig and thrombophilia test? Can GP'S do these tests? They cost me 300!!!


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## kara76 (Dec 14, 2004)

clotting screen is known as level 1 tests yet the gp doesnt do some tests an immune doctor would, yes cath

scouse do you know if they will do a drvvt test? (dilute russel viper venom time), im not 100% sure if this comes under normal clottig screen or now


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## Cath34 (Oct 14, 2008)

My God, you've lost me now!!!!!!!!


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## kara76 (Dec 14, 2004)

the drvvt is just a test where they put your blood with snake venom to se the clotting time


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## Cath34 (Oct 14, 2008)

So I guess there would have to be a problem with the initial test result to progress onto that level of testing? Yes? 

Have you ever had Heparin injections to thin the blood?


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## miriam7 (Aug 8, 2007)

im lost a few pages ago lol  snake venom


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## kara76 (Dec 14, 2004)

ive used clexane twice but i won't be next cycle as far as im concerned it hasn't helped and i have no clotting issue

i will once i get a bfp have another clotting screen done


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## popsi (Oct 11, 2007)

scouse... good news about the screening hun with your gp.. regarding the paper i would see another gp as some of mine will cover you for things and some wont ! I did not ask about tx tho as i took unpaid leave, but its defo worth asking another !


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## Scouse (Aug 9, 2007)

Level 1 investigations into recurrent embryo implantation failure-

Full blood count, liver function tests, Urea and Electroltes
Thyroid function (both free T4 & TSH)
Immunoglobulin panel (IgG, IgA & IgM)
Autoimmune antibodies (anti-nuclear antibodies, thyroid peroidase & anti-mitochondrial antibodies)
Anticardiolipin antibodies (both IgG & IgM)
Thrombophilia screen (lupus anticoagulant, Factor V Leiden and Prothrombin gene mutation

So hopefully between all these tests and the biopsy I will have some clearer idea - if not I think we'll be calling it a day!

I still haven't ovulated so don't know when I'll be heading to Liverpool?
GP said she couldn't sign me off as I wasn't incapable of work??  Will prob go back to another gp when I start jabing and just say I'm ill!!!!!!!!!!!


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## kara76 (Dec 14, 2004)

i bet you have googled ivf implantation failure almost as much as me

i might get a clotting screen redone before my next cycle


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## Scouse (Aug 9, 2007)

What is worrying....................the GP's always admit that we probably know more about IVF than them!!!!!!!!!!!!!


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## kara76 (Dec 14, 2004)

we do know more than them for sure


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## SAZZLEEVANS (Aug 5, 2005)

Hi

I have a problem with my igm or igg cant remember. I know my cardio lipin antibodies were raised. I googled it a year or so back and when i mentioned it to my consultant he said he  noticed they were slightly raised but wasnt sure if that was the problem. But as they had no explanation why i had a problem with implantation i pushed it and he chatted with a hematolgist who said that it could well explain it. So since then i have been on clexaine and asprin. So its worth keeping an eye on your results. 

Sarah


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## Scouse (Aug 9, 2007)

Well going to Liverpool for biopsy on Wed 5th - blood tests on the 12th and then follow up with JE on the 20th so hopefully by Dec I'll have some idea where we're going??


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## ANDI68 (Aug 17, 2007)

A busy month for you Scouse, but as you say you will hopefully have a better idea of where you go next.

Good luck hunni xx


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## kara76 (Dec 14, 2004)

as i said early

great news hun. the doc in liverpool is lovely. my results took just over 4 weeks


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## miriam7 (Aug 8, 2007)

i take it you ovulated then ...great news


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## popsi (Oct 11, 2007)

scouse.. good luck hun you will be in my thoughts and


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## Queenie1 (Aug 21, 2008)

good luck scouse, i hope you get the answers you need. 

thinking of you


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## Cath34 (Oct 14, 2008)

Good luck Scouse, - wishing you loads of luck   with your tests.


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## kara76 (Dec 14, 2004)

might aswell wish you luck here too so good luck


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## ebonie (Apr 17, 2007)

Good luck scouse


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## popsi (Oct 11, 2007)

scouse good luck honey xx


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## Cath34 (Oct 14, 2008)

Good luck Scouse for your appointment.


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## Scouse (Aug 9, 2007)

Thank you all for your good wishes and   - not much to report apart from OW!  Kara you kept that quiet!

Still got pain in my hips??  But AF due so think it may be that - and my insides coplaining about what I keep putting them thro  
Well have to wait 4-6 weeks for results!
Got to share - my dad drove me to clinic and Dr sked if my partner wanted to come and hold my hand??  My dad's face was a picture - not cos I was his daughter / not partner but the idea of holding my hand when I had legs akimbo and someone with her hans up my never regions!


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## popsi (Oct 11, 2007)

LOL scouse your Dad must have almost collapsed lol i know mine would have been horrified (god bless him)

sorry it was oww !! but hopefully it will all be worth it my love and will give you some long needed answers xx


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## kara76 (Dec 14, 2004)

scouse yep it sure did hurt

did you cramp really bad?i did and she had to do mine twice ouch  she said this was the sign of a healthy womb!


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## Scouse (Aug 9, 2007)

She kept repeating that because I'd never had a baby the womb muscles are very tight , and don't like being touched therfore causing spasms!  No kidding Sherlock!
I has such incredible spasms they couldn't get the 'equipment' back out - they had to wait for muscls to relax !!!!!!


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## kara76 (Dec 14, 2004)

did your blood pressure drop?

it will be so worth it to find out


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## miriam7 (Aug 8, 2007)

glad it went ok scouse ... apart from embarrasing your dad


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## Queenie1 (Aug 21, 2008)

glad it went well sorry to hear it hurt so much.  

 that you get the results you want.

lol your dad's face must have been a picture.


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## ANDI68 (Aug 17, 2007)

Hope you're getting back to normal Scouse.  Are you off work?


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## Scouse (Aug 9, 2007)

[fly]As normal as ever!!!!!!!!!!![/fly]
Yeah I'm back in work Andi I've had so much time off thought I'd better not push my luck X
How are you doing?


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## Cath34 (Oct 14, 2008)

Hi Kara, I was wondering how will your next laparoscopy help to improve your chances of ivf? Are they unclipping one of your tubes? Is there any other reason as I was thinking that ivf bypasses the tubes?  Hope you dont mind me asking   xx


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## kara76 (Dec 14, 2004)

no worries asking hun

they are removing my clipped tube, my tubes fill with fluid and cause pain and could leak or cause an immune reaction, blocked tubes shouldn't be a problem unless they are hydros like mine


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## Cath34 (Oct 14, 2008)

Oh ok thanks for sharing that with me, I had no idea that could happen. Fingers crossed for you now


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## kara76 (Dec 14, 2004)

just got to hope the next one works now


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## miriam7 (Aug 8, 2007)

we will all be praying it does kara


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## kara76 (Dec 14, 2004)

scouse if you read this i hope your well hun

time is going quick and i should soon be able to cycle with 20mg prednisolone a day, i really can't wait, its been a long wait


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## kara76 (Dec 14, 2004)

bumped for cath

see we have everything on the ivf wales section


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## Cath34 (Oct 14, 2008)

Yeh, thanks Kara.


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## Cath34 (Oct 14, 2008)

I will post my results and all info on my immune testing here from now on


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## kara76 (Dec 14, 2004)

great cath

i look forward to hearing all about your immune journey.


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## kara76 (Dec 14, 2004)

hiya cath

continuing our chat , i beleive the chicago tests, test for cd 56 and cd 16 nk cells. the biospy that the book refers to tests for cd 57 but when i had the biospy she tested for cd 56 cells as she fells these are the most important nkcells

it is very indept and i only know a certain amount about it all

i would imagine that if the blood test throw up a problem a biospy would be pointless as you would be getting the treatment for it anyway

i know that dr gorgy can now and has been prescribing intrilipds which is much cheaper than ivig and of course it now a blood product, humari is a tricky thing as this shuts the immune system off fully  and of course steriods


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## Cath34 (Oct 14, 2008)

Thanks Kara, that makes sense. He did mention Humira treatment and is awaiting USA to confirm particulars before using it as its new, but much cheaper than IVIG. Well we'll soon see whats what I'm sure.


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## kara76 (Dec 14, 2004)

i am sure he will advise you what is right for you

keep your chin up hunni and i am glad you have found a way forward

im logging off for the night so night night for now and chat soon


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## Cath34 (Oct 14, 2008)

Well its official, I have found out today that I have raised NK cells in my blood   I'm not sure what the treatment will be yet as not all of my tests are back yet. Apparently my Cytokines are ok whatever that means. So here we go on the immune rollercoaster I guess.


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## kara76 (Dec 14, 2004)

cath problems that are found are problem that can be solved?


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## Cath34 (Oct 14, 2008)

Lets hope so   I did ask about the biopsy that you had and he said that he doesnt normally have the need to do it but seeing as my Cytokines were fine he said there may be a reason to actually do it as there may be cytokies in the endometrium even though they're nott in my blood. Does this make sense Kara?


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## kara76 (Dec 14, 2004)

aren't cytokines the nasty killing ones?


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## miriam7 (Aug 8, 2007)

oh cath im sorry but at least you can be treated for them now


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## kara76 (Dec 14, 2004)

cath it was great to meet you today and didn't the time so quick


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## Cath34 (Oct 14, 2008)

Yes it was great thankyou and my goodness the day is over!!!! I haven't really done much at all!!! lol


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## kara76 (Dec 14, 2004)

cath good luck with your appointment tomorrow

i really hope they are able to give you some answers, i had an email from paul armstrong last night wow!

i emailed ages ago seeing if i could find anyone in the UK to prescribe intralipids without loads of testing (for furture ref lol) of course he suggested other immune tests which im not ready for as THIS CYCLE WILL WORK FOR ME PMA PMA lol


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## Cath34 (Oct 14, 2008)

What others did he recommend?


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## kara76 (Dec 14, 2004)

Anti Paternal Cytotoxic Antibody testing on both of you and possible HLA DQ alpha

i think he does something called LIT you have probably read about it in dr beers book

i will not be having these test though, i do believe my problem with implantation is my uNK cells


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## Cath34 (Oct 14, 2008)

I got my results back and i'm the same. uNK cells for me too. My DQ Alph hasn't come back yet!!!!!! Better had by tomorrow!!! I think I may have NK in uterus too? Just a hunch I have? Gonna ask about biopsy? When can we meet again for coffee? PM me Kara. Your dates are getting closer


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## kara76 (Dec 14, 2004)

i must admit after my last faile cycle with a day 4 morula i was pretty certain it would work and i think clinic thought the same

i had a blood test and the level was below 1 so not even a hint of implantation and i felt that i needed to find out why 11 grade 1 embryos haven't produced a baby, i look into full immune testing buy my heart sent me another way, so i went to liverpool for the biospy and bingo elevated uNK cells, she test for cd56 +/- where some biospys test for cd 57 cells

she was passionate and understanding and listened too

she also suggested a womb relaxanr for a short time as i cramp really bad so bad my blood pressure drop!!!! she said it was a sign of a healthy womb!

i believe that we find the path and we then find a way


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## Cath34 (Oct 14, 2008)

I agree Kara, with my 4 treatments and on 2 occasions very good blastos transferred and last time when I had blood test it was less than 1 too. I couldn't believe not a hint of implantation either. That pushed me to investigate further. My bloods did test CD56 but they are fine from what Ican see. My CD19+ CD5+ are way up though. Its so confusing!


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## kara76 (Dec 14, 2004)

cath i hope your appointment went well today and you have a plan of what next


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## Cath34 (Oct 14, 2008)

Thanks Kara, well all I can say is its going to be a long and very expensive road!  
I'll fill you in on Friday. x


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## kara76 (Dec 14, 2004)

cath i can't wait for a goss


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## Cath34 (Oct 14, 2008)

well I thought I'd better update this thread with my Chicago results.

NK cells are very high and I need IVIG x2 before EC and then again at +test and regularly after that!!!!!!

My Cytikine TNF 1 &2  are normal (thank God)

My LAD showed a weak postitive which indicates that I have been some way to being Pregnant fora short time I as I have produced antibodies but not enough to protect the embryo!!! Therefore they look at you DQ Alpha reaults for both of us and ufortunately we share 1 gene which means that I need Donor LIT treatment which is only available in Athens Greece!!!! I need 2 visits 1 month apart and then re test 1 month after again!! Oh joy I have an expensive rollercoaster ahead! 

Also I am homozygous which means I have inherited a gene from both parents which indicated thrombosis " sticky blood" and need 
5mg of Folic Acid on prescription and 60mg of Clexane and asprin also. 

I'm also thinking of having the endometrium biopsy for NK57 cells. If this is positive then I will need HUMIRIA!!!!! Hope not!!

Well thats me, I'm just waiting everyday for a response from Dr Tsgaris in Greece if I can go on 2nd June as they only do LIT every other Tues!!!!!!!!!!!!!!! Nightmare!


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## kara76 (Dec 14, 2004)

has he still not replied? how very rude


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## Cath34 (Oct 14, 2008)

No still no reply. I have been quite stern this time!!


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## kara76 (Dec 14, 2004)

good for you hun, fingers crossed you will get an email today


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## miriam7 (Aug 8, 2007)

oh cath its all so complicated! hope you here of them soon ...where can you get the ivig done ?


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## Cath34 (Oct 14, 2008)

Hi Miriam - I can either get it done in London at the clinic or Healthcare at home, which I would prefer I think as you are hooked up for 3-4 hours I believe! Oh Joy


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## miriam7 (Aug 8, 2007)

i havnt a clue what ivig is   i take it  you have it like a drip tho?


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## kara76 (Dec 14, 2004)

cath my mate had health care at home, she lives in swansea and a male nurse came and set her up for the infusion and she was hooked up for 4 hours, so dvd's and books at the ready. you will find it hard to sit still i bet

any reply for greece?


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## Cath34 (Oct 14, 2008)

That sounds good to me. Dr G said I can have it there as I'll be going up for scans and bloods etc.. but I dont want to be hanging around for 4 hrs in London just sitting there when I can watch dvds at home!!!!!
No reply from Greece. Ive tried ringing 2 no's and emailing flat out. How rude I say. Dont they want my business?


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## kara76 (Dec 14, 2004)

cath fingers crossed you will get a reply very soon, i agree it is very very rude


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## Jule (Oct 12, 2008)

Oh my goodness Cath i am so sorry you have to go thru all this.  I dont understand anything you typed but awful that all this needs doing.  Good luck with everything and i hope Greece contacts you soon    I suppose at least you have reasons now though and can move forward


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## Cath34 (Oct 14, 2008)

Thanks Jule - Yes it is a mine field - all this immune stuff but My God have I learnt quickly!!! I'm glad in a way that the £2600 I have shelled out already has give me results to think about even though the treatment is pretty grim!!   
The way I see it is that there were definitely reasons why really good blasts haven't stuck or even given me a bfp over the past 4 ivf treatments, so I just went for it and got some answers. Now I have to find the right balance for that all important bfp!!! It's gonna be a long road though!


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## Jule (Oct 12, 2008)

Yes it will but if you get your BFP it will all be worth it.  At least you have found this out now and not a bit further down the road.

There are girls on some of the other boards who have had ivig so you may want to speak to them. One girl i found on FET her name is Diane72 (i think that number is right), she has been thru a lot of this and she seems really knowledgeable, she may be able to help you. I really hope you get a positive result from your new journey


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## Cath34 (Oct 14, 2008)

Thanks Jules. May we all have some well deserved luck soon.


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## ANDI68 (Aug 17, 2007)

Good luck with it all Cath


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## Cath34 (Oct 14, 2008)

Well ladies I have found out today that DR T in Greece has changed his email address and the girls on the immune thread hav now given me another one to try!!! Gutted, I have been emailing the wrong one. Anyway have sent 2 today and still nothing!! Time is getting short, but the girls on the immune thread say go anyway and just turn up!!!!!!!!!!!!!!!!!!!!!! lol


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## kara76 (Dec 14, 2004)

cath i hope your've heard from greece hun


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## Cath34 (Oct 14, 2008)

Well at 5pm tonight I eventually had a reply and I am going to Greece on Tues for Donor Lit. Yippee   It took countless emails and I basically said I'm coming on Tues and I'll be there by 2.30pm!!!!!! It worked! Although I haven't got my flights yet!!!!!!!!!  
Wish me luck!!!!!!!!!!!!!!


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## popsi (Oct 11, 2007)

cath... good luck !!! xx


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## PixTrix (Aug 20, 2008)

Good luck Cath x


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## kara76 (Dec 14, 2004)

woo hoo about bloody time

thats great news cath, i bet you now have your flights booked, are you going alone?


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## Taffy Girl (Feb 8, 2008)

Wishing you lots and lots of luck Cath. Have a good trip and hope you get some answers


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## Queenie1 (Aug 21, 2008)

good luck cath for tuesday x


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## kara76 (Dec 14, 2004)

cath

have you booked your tickets?

good luck mate and i hope that it all goes well for you, i know how much you want to get started again


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## miriam7 (Aug 8, 2007)

oh cath thats brill i hope you have your flights and hotel booked now


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## Cath34 (Oct 14, 2008)

Thanks for all your good wishes girlies. I have our flight booked but we are going there and back the same day. Flying at 6.15am and arriving back at 9pm!!!!! What a day it will be. I am dreading it and if I'm honest I cant believe it has come to this!!!! Anyway I've got to do what I've got to do, if I'm not producing wnough blocking antibodies then I need injections to do so, but I am have someone else's lipids and not DH as we are a match and this scares me. Someone else's bodiliy fluid!!!!!!!!! Oh well I'm trying not to think about it!!!
I will be back on here Weds to let you know how it goes!!!! Hope I dont get delayed!!!!!!!!! Love to evryone. xx


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## miriam7 (Aug 8, 2007)

your going to have a busy day then ..hope the clinics easy to find!


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## kara76 (Dec 14, 2004)

cath jeez thats one hell of a day for you

i hope it all goes to plan


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## PixTrix (Aug 20, 2008)

Hope all goes well Cath, will be thinking of you x


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## Cath34 (Oct 14, 2008)

Thanks girls, bed soon for me, we are leaving at 1am!!! Night night x


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## kara76 (Dec 14, 2004)

good night huni 

i will be thinking of you


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## Queenie1 (Aug 21, 2008)

good luck cath hope today goes well for you.


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## Cath34 (Oct 14, 2008)

Well, thanks girls, I've made it home safe anyway! As you know I went for a day trip to Greece yesterday! lol   
It was absolutely knackering to start! We left at 1am and arrived back at 1am! A 24hr journey. Anyway after findng the clinic (which I never would have if I hadn't been reading another posting on another thread) it actually went ok.
Dr Tasgaris was absolutely fab, what a knowledgable man who is sooooooooooo in tune with immune issues its unreal. He gave me a full consultation which I wasn't expecting but all the same was very worthwhile. He pretty much said the same as Dr G which is good to know. My God there is so much in this immune stuff. If any of you are thinking of delving into this then I would say there is certainly something in it. He basically told me that without immune therapy I wouldn't get pg due to NK cells and sticky blood!!!!!!!! Hopefully if I can get a BFP this time round.


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## kara76 (Dec 14, 2004)

cath i am so pleased it went well for you

sounds like an exhausting yet worth while trip


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## Cath34 (Oct 14, 2008)

And I have to do it all again i 4 weeks time!! Bummer!


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## kara76 (Dec 14, 2004)

it will be worth it, does your tx start asap after your next LIT?


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## Taffy Girl (Feb 8, 2008)

Sounds like a good days work Cath   
Hope Dr T helps you on your way to that BFP


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## Queenie1 (Aug 21, 2008)

cath so pleased to hear that your trip was worth while. 

will you travel in a day again or stay over next time.

things are looking good for a bfp for you


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## miriam7 (Aug 8, 2007)

so glad your trip went ok..maybee next time wont be as rushed


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## PixTrix (Aug 20, 2008)

wow Cath. All worth it for your BFP x


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## Cath34 (Oct 14, 2008)

Thanks girls. x


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## Cath34 (Oct 14, 2008)

Well I'm off to London again this week. I'm going for the dreaded uterus biopsy for NKcells with Dr Gorgy. I'm not looking forward to that!


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## kara76 (Dec 14, 2004)

ah so you decided to go for it

is this for cd 57 nk cells?

mine are cd 56+ in my womb.

You will probably cramp, i did. Are you going alone hun?


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## PixTrix (Aug 20, 2008)

Good luck Cath x


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## Cath34 (Oct 14, 2008)

No my brother is driving me and my mum is coming too. Thanks girls x


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## miriam7 (Aug 8, 2007)

good luck cath good you will have some company


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## Cath34 (Oct 14, 2008)

Oh yes its a family outing!!!


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## Taffy Girl (Feb 8, 2008)

Good luck for you biopsy this week, Cath.


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## kara76 (Dec 14, 2004)

cath your up early lol

hope today goes well for you and dr gorgy gives you some more news

i bet you wana start now


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## Jule (Oct 12, 2008)

Wow Cath i havent been on here for a while and ive just read about your trip to Greece and now back to London.  Hope your biopsy goes ok.  will you have you tx in London?  Hope you manage to start soon and they are able to tx the immune issues for you


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## Cath34 (Oct 14, 2008)

Well I had my biopsy yesterday for CD 57 cells and it went well. Not the most pleasant thing Ive ever had done but he was quite gentle which was good. I am in pain today and it has brought my period on which I guessed it would but I should get the result back in 3 weeks time. I'm   its not positive as I dont want to take Humira!!


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## miriam7 (Aug 8, 2007)

glad biopsy wasnt to bad cath ...bit of a long wait for the results tho ...good luck


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## kara76 (Dec 14, 2004)

pleased it went well and it was nice to chat with you hun

we always set the world to rights lol

mine brought on my period to, i spotted for a few days before full flow


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## PixTrix (Aug 20, 2008)

glad biopsy went ok Cath x


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## ANDI68 (Aug 17, 2007)

My biopsy brought on my AF too Cath, spotted for ages ... hope all will be well with you xx


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## Cath34 (Oct 14, 2008)

Well I had a hell of a shock yesterday - I found a lump on my right breast/armpit and it was so painful. I immediately thought of the worst and was worried sick yesterday thinking all sorts. Anyway I went to see my GP today and she examined me thoroughly and after I told her everything regarding my test results, homozygous positive etc... and the drugs I'm on eg cilest (the strongest pill on the market!!) she says that its my hormones and that my breasts are full of oestrogen and are very full. I have to admit she did put my mind at rest and the lump had miraculously disappeared by the time she examined me although it was still very painful. She said that the pill had probably caused this and that she was amazed that I hadn't had any problems before this!!!! Anyway she wasn't happy that I was on cilest as it can cause clotting and seeing as I have a clotting problem she wanted me to ring Dr Gorgy. I have and just for tonight I need to take asprin as usual and also 20mg of Clexane and ring him back in the morning!!! Scary! 
I just thought I'd share my story with you all tonight! I'm just glad that my lump has gone and that its not sinister. Another check up in a month just incase.


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## kara76 (Dec 14, 2004)

omg cath what a worry

i know the pill did some strange stuff to my body, and my breast went up in size and were so painful. i am so pleased you got yourself checked out

btw im in carm tomorrow seeing a mate at noon in the coffee shop, if your around pop by for a cuppa


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## popsi (Oct 11, 2007)

cath... omg thats scary, i have read some stories that fertility tx can cause harmless lumps, but all the same very scary ... you were right to get it checked straight away xx


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## Jule (Oct 12, 2008)

Glad everything ok with the lump Cath, i know i get lumps with all these hormones but its always nice to have reassurance that its nothing.  Hope you are ok and all your appts in london are going well.


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## miriam7 (Aug 8, 2007)

glad you got it checked out kath and your ok ....hope you get the clotting sorted too


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## Cath34 (Oct 14, 2008)

Thanks loads girls, I am relieved tonight I must say.


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## Cath34 (Oct 14, 2008)

Well another day trip to Greece for me on Tuesday  !!!! The things we do!!!


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## kara76 (Dec 14, 2004)

thought it was

good luck and i hope the flight is ok hun


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## Jule (Oct 12, 2008)

Oh never again why do you have to go again?


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## miriam7 (Aug 8, 2007)

oh good luck enjoy your flying visit


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## Cath34 (Oct 14, 2008)

Thanks girlies. Well you have to have 2 LIT treatments a month apart so here we go again.   
Will let you know how it goes ladies. xx


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## PixTrix (Aug 20, 2008)

Good luck Cath x


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## Taffy Girl (Feb 8, 2008)

Bon Voyage Cath  
Hope you have a good trip 
x


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## kara76 (Dec 14, 2004)

cath have a good trip


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## Queenie1 (Aug 21, 2008)

have a good trip cath, hope it goes well.


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## Cath34 (Oct 14, 2008)

Thanks ladies. xxx


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## Jule (Oct 12, 2008)

good luck Cath, hopefully this will be the last time you need to go there. xx


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## kara76 (Dec 14, 2004)

cath i suppose we should keep this thread going for you as then you can always find things to look back on


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## Cath34 (Oct 14, 2008)

Cheers Kara   I really dont want to do that journey again, its a killer!!! I think I will be tired for a few days. Lets just hope its been worth it when the retest result come back!!!


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## kara76 (Dec 14, 2004)

yeah fingers crossed hunni

what are you stimming with this time?


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## Cath34 (Oct 14, 2008)

No idea   I think menopur as I know it works well for me but I haven't got that far yet!! I'm also excited annd scared this time around as theres more involved this time, IVIG Intralipids etc... scary.


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## kara76 (Dec 14, 2004)

with you do ivig and intrlipids at home or do you need to go to london?

im wondering what news regarding immune issue will come from the annual eshra meeting thats going on this week


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## Cath34 (Oct 14, 2008)

Is that whats going on Amersterdam? Dr G has been at some fertility convention for a few days there. 

Well this may interest you Kara, Dr G has now sorted out a test to see how Intralipids reduce NK cells. Its very new but is already being done somewhere in USA. Like with IVIG they can tell us how that will reduce the levels and by how much, they can now do it with Intralipids. Dr G is the 1st I think to go for this over here and I know it will be popular as IVIG is £1250 p/transfusion v Intralipids £350 p/transfusion, what a differnece hey? If it does the same thing then thats great. The only reason they push IVIG is beacause its proven and they know it works, well this could go the same way who knows.


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## kara76 (Dec 14, 2004)

there eshre annual meeting is a big event , experts from all over the world gather and present new research etc.....in the indepenant today it was saying how funding for ivf in the uk is one of the lowest and how a new blood test is being devise to show chances of success

good for dr g i heard there was a test, i assume it the lab in chicago RFU?

now all he needs to do is LIT


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## Cath34 (Oct 14, 2008)

we're on the case, he wants to!!!! I hope he does, I really dont want to go back to Greece again!! Hoping I wont have to   
Yes I believe it must the same convention thingy. Did JE nd Lyndon go? Maybe they might move forward with immunes if they went


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## kara76 (Dec 14, 2004)

im not sure JE has been away but whether its to this i have no idea

I do believe that a big IVIG study was due to me presented, IVIG and recurrent miscarriage

i really wish specialist would do a full blown blind study and prove without doubt it works as im still on the fence so to speak lol....i know there must be something in it!!!


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## Cath34 (Oct 14, 2008)

whens this study being published, I'd like to read it. I do believe thats there's alot in what Dr Beer has written, our bodies can be very strange things sometimes!!!


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## kara76 (Dec 14, 2004)

i believe it was due to be published and present at the eshre annual confence so now really

i have googled and haven't found it yet!

if you want to look into her work is professor stephson in chicago


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## Cath34 (Oct 14, 2008)

Just had my NK 57 cells biopsy results back and it was negative, thank God!! No Humira for me, yippee!!


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## Queenie1 (Aug 21, 2008)

thats good news cath so pleased for you.


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## Taffy Girl (Feb 8, 2008)

Yay   - I don't really understand all this stuff - but am very pleased its a good result for you Cath. 

Good luck for your treatment - wont be long now 
x


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## kara76 (Dec 14, 2004)

cath as you know i think this is great news

phew thank god you don't have to add to your list of drugs


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## Cath34 (Oct 14, 2008)

Thanks girls, yeh I know Kara, I feel like I'm on every drug possible for immunes and IVF!!! It had better be worth it!!


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## PixTrix (Aug 20, 2008)

fab news Cath x


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## Jule (Oct 12, 2008)

Cath glad its good news and your results are negative.  everything is looking really good for this cycle for you good luck


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## miriam7 (Aug 8, 2007)

great news cath


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