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  • "pearl.crane" started this thread

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1

Wednesday, June 2nd 2010, 11:23pm

'Chicago test' in London

Hi everyone,

I'm pretty new here and totaly confused by the quantity of info I've found here.

I see some girls had 'Chicago test' done in US (by sending blood samples), but as I understood there might be some London labs (or clinics) doing the same.



Please, any info about it!!! Any clinic in London doing 'Chicago'???



I've had 5 misscarr., level 1 test completed,nothing found. All losses between 6-7.week (only the first one was in 8- no heart action registrated).

Every pregnancy was sustained by progesterone (max dose, or so). The last one by fraxiparine plus (low molecular heparin)- no results.

Afterwards, 4 months I was treated with IVIG, but didn't get pregnant. IVIG was recomended as a good solution for undefined ,they suppose imune, problem (because it's harmless).

Now -nothing I take ,nothing I do. Acctually, waiting for my period (if it comes).

I'm afraid I have some imune disorder, but yet haven't discovered which one .



Any similar experiance will be highly appreciated!

Hope you will have successful stories to tell me about!

Thanks everyone!

BraveGirl

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Thursday, June 3rd 2010, 12:19pm

hi there

I have replied to you on a PM

BG
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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Thursday, June 3rd 2010, 7:34pm

Hi Pearl i responded to your pm and just seen this post :)

I think its best you have the level 2 tests as level 1 tests are NOT for immunes there for blood clotting disorders etc - level 2 tests are more in depth they test for killer cells that attack the embryo from implanting or the placenta - it really is worth having the tests done - i have told you the hospitals where you can have them done in my pm a few days ago.

I really would suggest going to the ARGC in london as there cheapier for you than other private hospitals and with you coming from sibera its much better for you to go to london than nottingham etc.

Glad you listened to me and pmd others and set a topic up in immunes :D its always good to get other peoples advice and here what others say on the matter. Good luck hun.
x

  • "pearl.crane" started this thread

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Thursday, June 3rd 2010, 8:46pm

Yes Tinks, I hope I will get information as much as possible , because I just discovered this field of immunology the other day , so I'm very unexperianed with any procedure.

In these two days I found out a lot and I'm quite sure I will need to take that step.



I'm from SERBIA, not Siberia (thank god),and it shouldn't be a trouble coming there.

Of course, noone wants to overpay what doesn't have, so thanks for advice. I wouldn't know myself which one to choose.

My head's 'ringing' all day, I cannot stop thinking of everything I got to know these days. I need a little break.

Till new research,

See u girls

BraveGirl

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Thursday, June 3rd 2010, 8:53pm

you will pay about £1000 wherever you go but you need to make sure you get the DQ alpha and ARGC dont do that as a matter of course, you will need to make sure its added on too.

Care do it automatically. I do think too London will be easiest for you.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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6

Thursday, June 3rd 2010, 9:13pm

My hospital portland street in london does the dq alpha so you can always go there but they will be more expensive - thing is they only treat dq alpha with intralipids or ivig and you have had ivig multiple times.

I never had the dq alpha but i had been pregnant multiple times to my x husband so its not a case for me and didnt think it was a big deal and important for me to have it done.

Although my dr at portland street did say that it would be worth being tested for it, but if i didnt want to the intralipids is what they use to treat this condition any way and i was being given this, so hopes this info helps you decide.

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Thursday, June 3rd 2010, 10:37pm

...Meaning, whether we have dq alpha match or not, I would be treated with intrallipids as they are integral part of any immuno treatment.
Hmm, i just got a post about ARGC,as a cheaper ,not worse solution,so I'll see. If coming to london, i'll first get prepared everything here and do extra tests, if needed, (and/or some of them repeat), and then do everything else there.
This is my first day of thinking of london, so i need to sleep over the whole idea.
Now, I'm just happy to know there is hope and solution!

BraveGirl

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Friday, June 4th 2010, 8:33am

Intralipids are given to ladies with high TNF to bring the levels down or to those with DQ alpha match with their husbands as the match causes the TNF to flare once the embryo is put back in the body.

It does not matter if you have got pregnant with the person before or not. If you either cannot get pregnant with IVF and have good embryos, or have had miscarriages then you need to test for DQ aplha I think. I have had miscarriage and 3 failed IVFs and my embryos look perfect. We get blastocysts and everything. BUT we have a DQ aplha match.

So when the baby is put back into my body the TNF and NK cells rise and kill the embryo by causing clots.

I dont know if you would be able to get ILs without having the test although I am sure you could probably find a doctor who you could pay who would write a prescription without checking tests but I would not trust such a doctor.

You need to get a proper diagnosis before you start taking drugs otherwise you cannot be sure that all your issues are being addressed properly.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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  • "pearl.crane" started this thread

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Friday, June 4th 2010, 10:47am

So Brave, I googled TNF and found which deseases couse it's growing.
That means you were tested on RA neg. ( it's in level 1) and don't have any genetic inheritage, but when your egg interacts with your husband's sperm, that's the trigger cusing the TNF growing. Any of it wouldn't occur if you changed partner. One of doctors, a biologist, who I asked about my case, asked me: All miscarr. with the same man?' Well, change the man, it's probably genetic incompatibility going on !' Very comfortably ,I thought! Luckily, even if he was right, there is a cure!

Yesterday I visited a IFV clinic just for consultation and advice about IVF in my case, and I was given the name of a dr who is specialised in immunology diorders, so I will try to find her and we'll se what she will have to say. Maybe it will be possible to do some additional tests here,or to repeat the other ones.Anyway, the dr who talked to us was open for new ideas of immunology tests and treatment (as I mentined possibility of going to england) ,which rather surprised me, because I know there's no many drs having seen cases like mine. The other day, I visited another clinic and dr , when saw my results, was like A-A-A , because he didn't know what else to say. I have to point out that both are very distinguished and prominent drs. Both clinic are in Skopje,Macedonia, where I'm currently living .

The very same day (i.e. yesterday) my father arranged me an appointment with the dr whose clinic is most successfull in IVF in Serbia. That would be in August. (for free,of course).

So, the very best thing would be if I came to london during the summer to do all tests I need and than came back here for IVF with 2 embryos transfered and give birth to the twins. The ideal scenario!!! Keep your fingers crossed for me!

I really evny you, Brave, cos you're so relaxed now, though I cannot imagine what stress and hell you must have been through while waited for the results. Now, you can be calm and just wait. What you wish, it must happen eventually.

Talk to you soon, girls!

BraveGirl

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Friday, June 4th 2010, 10:56am

hi there pearl.crane, yes you have that correct about the TNF and genetic match. with someone else I would not have the same problem and could probably have a baby by IVF easy- peasy. Still the main thing is that I have a reason for it not working now and also there are treatments out there that can work. I just have to hope that they will now work for me.

It sounds good that some of the doctors are interested in the immune and as you say, you could get tested and then ask for the drugs you need and sounds like you will get them.

I think I sent you my protocol by PM so that is something you could mention to the doctors if you like.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

  • "pearl.crane" started this thread

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Friday, June 4th 2010, 11:09am

If I told them I know the protocol, they would propose me to cure myself. Thay're so vain and if you don't know them personally, you'd better pretend not to know much!
I posted a post fo u at another thread!

  • "pearl.crane" started this thread

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Friday, June 4th 2010, 1:13pm

This is a quote I copied from another british forum. It's about ARGC and Care Nottingham.

'You would need to add an initial consultation fee to that if you were a new patient with either doctor. Additionally I don't think either of these two clinics offer just immune testing if you are not a patient or did not intend undertaking treatment with them. '

Could it possiblly be true? Could you check it for me,please?

Tinks

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Friday, June 4th 2010, 1:21pm

You DO have to pay to have a consultation with both clinics - You phone them arrange appointment and also tell them on this appointment you want to have the level 2 tests done there and then.

Tell them a bit about your back ground and they will book you a early appointment.

Wow you have caught up on knowing a lot from knowing nothing about level 2 tests in 2 days lol

Can i ask you a question ? How come you got ivig free and get it free ?

  • "pearl.crane" started this thread

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Friday, June 4th 2010, 2:46pm

I realised I had to pay initial fee, but the post says :' Additionally I don't think either of these two clinics offer just immune testing if you are not a patient or did not intend undertaking treatment with them. ' . So, I was wondering if they would do my test only, without having all other procedures at their's? My plan was to get tested, get the results and be back home for further actions (whatever they would be like), not to stay overthere and keep paying for the things I can get for free. Would they accept to make test and not pregnancy protokol afterwords?

As for free IVIG, I've put a post at another thread, so you can read it there
Has anyone had a 'normal' result with level 2 immune tests??

Meanwhile, I've found Intrelipids info on serbian sites and checked out: it is on a list for free administration when needed. So, I hope it won't be a great deal getting it. But, on the other hand, some studies indicates IVIG as a mainstay of immuno treatman. It's sooooooo far to think about now!!!

What to say: do all analyses you can overthere, than find a serbian husband and his health security coverage will provide you with free treatments and medications.

BraveGirl

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Friday, June 4th 2010, 3:07pm

I think if you explained to the clinic where you lived and the tests you want that they would do them.

A friend of mine gets pregnant naturally but kept losing her babies so she got tested (and did not even need IVF) and then when she got pregnant this time she got the immune drugs and is now 16 weeks!
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

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Saturday, June 5th 2010, 9:40pm

No you dont have to be a patient to get TESTS at the argc - i know this for sure. You do however have to pay to see a doctor but onec tests are done you DO not have to be treated by them.

Yes would suggest booking a appointment with argc, have the tests and then get what there protocol would be and see if your doctor in your country can give you the recommend treatment IF you test positive for anything.

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Sunday, June 6th 2010, 11:08pm

Hi Pearl,



If you are intending to cycle elsewhere then Dr Gorgy in FGA in London can do all the level 2 tests AND offer you immune tx should you need it. We live in Scotland and we wanted to cycle with the same clinic in Glasgow so we decided not to go with Dr N at CARE Nott, although he was initially my first choice. Dr G can also do tel consultation so when you get chicao test results back after 2 weeks you can have the consultation over the phone if travelling to UK would be an issue. Also, you need to bear in mind that there tends to be a several weeks of waiting list at CARE. (Not sure about ARGC)



Hope this helps. PM me if you need more info hunni



SX
After pretty rocky ttc & pregnancy history, blessed with two lovely children. Don't stop believing....

  • "pearl.crane" started this thread

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Monday, June 7th 2010, 9:09am

Hi Saffron,

I may be pregnant at the moment, so first, I have to beat my body soldieers with all weapons I have not to fight our 'guest'. I haven't been a good host so far.

Are u implying that selecting dr and clinic make difference in interpretating test results and prescribing therapy?
I never though of it, cos my problem is as rare as the drs who could traet it.

Who is dr N.?

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Monday, June 7th 2010, 10:54am

Dr N - Dr Ndkwe from CARE NOTT.



Re your question. Well yes and no. I wasn't really implying anything...lol I was just saying Dr Gorgy can let his patient do IVF somewhere else unlike places like CARE NOTT. I read you say "the very best thing would be if I came to london during the summer to do all tests I need and than came back here for IVF with 2 embryos transfered and give birth to the twins. The ideal scenario"' and "'My plan was to get tested, get the results and be back home for further actions" So I thought you are intending to cycle back home after getting immune testing done in UK?



But yes different dr have different approaches, some recommend more agressive tx than others, but that's inevitable as immune tx is still being experimented and different dr have diferent emphasis on different areas of their treatment plans. Also while the level 2 tests they do are similar they may not be exactly the same either, for example, I have heard that Dr N at CARE doesn not routinely test LAD (one of the tests on level 2), while Dr Gorgy does.



Hope this answered some of your questions.
After pretty rocky ttc & pregnancy history, blessed with two lovely children. Don't stop believing....

  • "pearl.crane" started this thread

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Monday, June 7th 2010, 11:27am

Thanks Saffron,
you made it clear, as for drs. So far i have been told that ARGC also could arrange test is done with no other bounds.


So,we'll see what happens next , but if I'm coming then I'll make sure to do as many analyses as possible. I'r better have them all done.

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Monday, June 7th 2010, 2:41pm

Pearl i agree with saffron about dr ? at care notts - there waiting time for a appointment is VERY LONG 3mths for me so i thought sod that and went to london - You want to see a doctor who is just as proffesional but available to see and NOT have to wait donkeys years for a appointment.

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Monday, June 7th 2010, 4:01pm

Yeah,yeah, but now ,before doing anything ,I have ti wait to to end 'this state of mine' up with either prg on ,or another miscarr.

You Tinks, recomended the ARGC as the cheapest and not the worst one, but we'll see when it comes to it!

I've decided to go for IVIG tomorrow morning, cos I don't feel like driving late at night!

BraveGirl

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Monday, June 7th 2010, 4:34pm

ARGC being cheaper may be true but please check that the price quoted includes DQ Alpha.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

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Monday, June 7th 2010, 8:33pm

I dont think the ARGC do dq alpha i know they dont do the mthrfa is it ?

Portland or lister or care notts do this test - argc is cheaper but they dont do dq alpha or the mthfra if thats right <

The argc is not the worst one - neither of the hospitals are the worse one there all good hospitals its just some are cheaper than others ARGC being one and some you can get appointments straight away and others you have to wait a while due to there busy schedual.


Would having ivig be a good thing to have so soon - you said your not due on yet! when is your offical test day i.e period date. ?

May be worth waiting till offical test day and then book for your ivig.

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Monday, June 7th 2010, 9:23pm

The official date is tomorrow, (one day late).
I put a post on other topic.

I know the hospitals are not bad, I just wanted to say that cheaper doesn't mean worse!
If it comes to going to UK, I probably will make a choose depending on their schedule. That sounds reasonable!

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Tuesday, June 8th 2010, 4:31pm

As far as I understand, the tests all those clinics carry out are NOT exactly the same so it is understandable some are cheaper than others. I would say double check what each clinics offer to test before you make a comparison.



I paid about 1800 for all our tests and initial consultation with Dr Gorgy but that included infection tests for both me (swab) and DH (sperm sample), hidden Chlamydia test (this is menstrual blood test - even when you had neg chlamydia with swab before apparently you can be + ), DQ alpha, mthrfa and LAD. My view is that if you are taking trouble to visit one of the immune clinics anyway you might as well get the full, comprehensive tests done, rather than coming back to do more later on but that's just me.



Personally after speaking to ladies on difefrent boards I figured out that the difference in cost bet clinics are not that much in the end. I guess in your case what may matter is that wheter the clinic of your choice would be happy to do a telephone consultation instead of a face to face app. I know Dr Gorgy does but I don't know about other clinics. For example, CARE said that they don't give tel consultation to go over the results but not sure about ARGC.



Hope this helps.
After pretty rocky ttc & pregnancy history, blessed with two lovely children. Don't stop believing....

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Wednesday, June 9th 2010, 8:45pm

Just nosing about! TX at the ARGC is a LONG process, so if you do chose it as your clinic, plan to stay in London for around 2-3 weeks!!! I think the ARGC rock, and Dr T is a genius, but then, I would!!! Had by IVF, Chicago tests IVIG and every blooming drug/ steriod/ clexane/asprin/more steroids, more IVIG more clexane etc etc etc going with them - cost a FORTUNE but totally and utterly worth it. Good luck with whatever you choose, would defo do the full tests and full drugs available - is more expensive but you should (in theory) have less TX coz it works sooner???!!!
Cathie

Proud mum to Eric after 3 years TCC!!!

This post has been edited 1 times, last edit by "Cathie" (Jun 9th 2010, 8:46pm)


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Wednesday, December 10th 2014, 9:11pm

Chicago test in Athens

Hi all,
Just wanted to add that you can get the chicago test done at only £ 300 at Serum IVF in Athens.
Just flew down there from Denmark. Also had intralipids done at only £ 80.
X

This post has been edited 1 times, last edit by "blissfull" (Dec 10th 2014, 9:12pm)


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