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  • "Monkeymagic" started this thread

Posts: 174

Reg: Oct 20th 2009

Location: Cyprus

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1

Monday, May 31st 2010, 11:46am

Where to start???

My dh and i are interested in getting tested for immune issues?

I have loads of questions as i don't really know much about it? can anyone help?

What would be the main signs/symptoms if you did have immune issues that were preventing you from getting pregnant?

Approximately how much are the tests if you have this done privately and how timely is it to get your results back?

Can these problems be treated and then go on to have a healthy pg?

Many thanks for all your help

xx

    United Kingdom

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Monday, May 31st 2010, 1:21pm

hi hun
just wanted to wish you luck and i don't know much about them the same as you but hopefully someone on can give you a bit more info big hugs xxxx [zx127]

Tinks

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Monday, May 31st 2010, 2:22pm

Hi MM

I have a immune disorder. I have cd19+cd5 killer cells, i have recurrent missed miscarriages at 8/10 weeks gestation.

I was told my pregnancy losses was unexplained for a very long time, untill i had enough and went to a private clinic to get the immune tests done.

I went to a private clinic called the ARGC in london my tests cost £904 they took 18 tubes of blood and i had my results back in less than 2wks.

There is other places you can have them done at such as portland street hospital, care nottingham, but they are more expensive when it comes to testing for immunes than the ARGC.

I was tested for the following.

Th1 -Th2 cytokine ration - TNF CD3+CD4 & INF CD3+CD4
Histone antibodies
Thyroid antibodies - thyr.perox.abs.
ANA
DNA Antibody (DS)
Cardiolipin Ab igG
Cardiolipin AB IgM
NK ASSAY % KILLED PANEL
50:1
25:1
12.5:1
IgG 12.5 50:1
igG 6.25 50:1
IgG 6.25 25:1

CD3:
CD19%
CD56:
CD 19+5 Cells

TSH
FT4
FT3
.................

You cant really tell if you have a immune disorder to be honest, some people never get sick such as colds etc due to there immune system being so HIGH.

This could be a sign, unexplained fertility - unexplained failed ivfs - unexplained recurrent pregnancy losses - FIT the bill for a immune disorder.

However before you have Immune tests LEVEL 2 - there is LEVEL 1 which you can have FREE on the nhs, done by your fertility clinic or you can request your gp to have the tests done.

The following level 1 tests are.

Karyotyping for DH and you (tests for any genetic issues)
Sperm assays and investigations - including DNA fragmentation testing

Uterine investagations should be done to make sure everything is ok.

Hysteroscopy, HSG etc. to check for scarring, fibroids, polyps etc
Thin lining, no triple stripe etc.
Doppler - to check blood flow in uterus

More level 1 tests -

Insulin resistance (fasting glucose test)
Thyroid levels (TSH, T3, T4)
Anti Nuclear Antibodies
Anti thyroglobulin
Anti-thyroid antibodies
Full Blood count
ESR (Erythrocyte Sedimentation rate)
RA (Rheumatoid Arthritis)

BLOOD CLOTTING PANEL (Thrombophilia panel)

Serum Immunoglobulins (IgG, IgM and IgA)
Activated Protein C Resistance
Factor V Leiden genotype
Anti Phospholipid Antibodies
Lupus Anticoagulant
Anti Cardiolipin Antibodies
Plasma Free Protein S level
Factor II G20210A
Prothrombin Gene Mutation
Antithrombin III M
Fibrinogen level
APTT (Activited Partial Thromboplastin Time)
APTR

MTHFR (methylenetetrahydrofolate reductase) and connected with this is measurement of your homocysteine levels

BACTERIAL

Mycoplasma,
Ureaplasma
Bacterial vaginosis
Chlamydia and any other bacterial infections
Varicella Zoster antibodies

Progesterone
Fsh
LH

......................

You need to have the above LEVEL 1 tests done first incase you have a blood clotting problem such as lupas which can cause fertility problems, failed ivfs, and miscarriages.

Bearing in mind that you MAY test positive for any of the level 1 tests and also test positive for somthing in the level 2 tests - they say any one with a blood clotting disorder
will have OTHER immune problems.

This site you may find helpfull http://www.repro-med.net/repro-med-site2/ ( Link not endorsed by fz)
You will find all about immune disorders on this website - also there is a book called (Is my body baby friendly) which is a very good read and answers all your questions inregards to immune disorders, you will read it and somthing might stand out and make you say this is me this is what i have etc - its a great read and most ladies have read it and found it VERY good.

You can get that book on amazon :)

Most ladies diagnosed with a immune disorder are treated with infusions called intralipids or ivig or humira injections - YES a lot of ladies have been cured and gone on to have a baby :D

I have a diary as you can see in my sig box under the big name TINKS - if you click on the part saying my diary you can read all about my immune disorder if you wish to do so :)

Any questions dont hesitate to send me a pm or post in my diary and i will help you if i can with your questions.

Wish you the best of luck.

TINKS

XX

BraveGirl

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Monday, May 31st 2010, 4:08pm

Tinks' advice is really helpful hon. Speak to your GP and see if you can get some level 1 tests free.

I have just had level 2 done (£1000) at Care after nothing showed up on my level 1 tests. Turns out my DH and I have a DQ alpha match, hight TNF and NKcells.

Read all the stuff at the top of this section too for advice and I cannot suggest enough that you should buy Dr Beer's book is your body baby friendly?

feel free to PM me if you want more help. x
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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  • "Monkeymagic" started this thread

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Monday, May 31st 2010, 6:07pm

Thank you so much, very helpful as always xxxxxxxxxxxxxxxx

Big hugs xxxxxxx

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Wednesday, June 2nd 2010, 12:43pm

I agree with tinks and bg. If you suspect implantation failure or have miscarried more than on e I would suggest taking the tests. I can't personally vouch for it working, but I'm on immunology drugs next cycle. There are many success stories though- too many to ignore it as a possible explanation.

Read the threads and dr beers book!

Good luck, sam

o, my tests tooK two weeks too!


3 IUI and 5 IVF :BFN:
What's the future?
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High NK and high PAI-1
On Metformin & Immune Cycle

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Reg: Jun 3rd 2010

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Thursday, June 3rd 2010, 9:10pm

new to this....

Hello all...

I've just reread this, so apologies in advance but if I don't send it, I never will!

this is my first ever posting after 2 years of trying for a baby

I've driven myself half mad accessing info and this Immunology testing is the first thing that makes sense of my situation

So we've had 6 recurrent miscarriages over 2 years- no problem getting pregnant- I can't maintain them.
I'm 41 and so afraid this might not happen for us.
I've had a range of tests done and hystroscopy and clear except for hetrozygous Prothombin clotting factor. Took Clexane and aspirin last pregnancy- still miscarried at 6 weeks

I have a 5 year old son (an unexpected pleasure) from a previous relationship and for whom I'm so grateful...but the desire to have a baby with my husband is overwhelming at times..

I live in Dublin, Ireland and have eventually decided to have Immunology testing done, So I need to get blood drawn and and send it to Chaicago Rosalind frankin centre myself because no one does immunity testing here!!

What range of tests do I do as they are expensive...Is nk assay and HLA enough...Suggestions, please..and thanks in advance...I feel I'm ranting and disjointed...so hopefully I'll get better at this! x

BraveGirl

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Friday, June 4th 2010, 8:42am

hi there hon

I think with your history it is a good idea to get the Level 2 tests. These were my results:

DQ Alpha

Me 0201,0301

DH 0102, 0301


TH1:TH2
TNF-a:IL-10 (CD3+ CD4+) 33.7 (13.2-30.6)
TNF-g:IL-10 (CD3+ CD4+) 14.3 (5.8-20.5)



NK Assay (%killed) Panel

50:1 13.9 (10-40)
25:1 8.6 (5-30)
12:5:1 5.9 (3-20)


%CD3 85.8 (60-85)
%CD19 5.4 (2-12)
%CD56 9.3 (2-12)
%of CD19 cells CD5+ 14.8 (5-10)

I have also got this information from another website that may assist and are tests that you should look at getting:

Karyotyping for DH and you (tests for any genetic issues)
Sperm assays and investigations - including DNA fragmentation testing(anyone with more info. on this as I know v. little about this)

Uterine
Hysteroscopy, HSG etc. to check for scarring, fibroids, polyps etc
Thin lining, no triple stripe etc.
Doppler - to check blood flow in uterus


Insulin resistance (fasting glucose test)
Thyroid levels (TSH, T3, T4)
Anti Nuclear Antibodies
Anti thyroglobulin
Anti-thyroid antibodies
Full Blood count
ESR (Erythrocyte Sedimentation rate)
RA (Rheumatoid Arthritis)

BLOOD CLOTTING PANEL (Thrombophilia panel)

Serum Immunoglobulins (IgG, IgM and IgA)
Activated Protein C Resistance
Factor V Leiden genotype
Anti Phospholipid Antibodies
Lupus Anticoagulant
Anti Cardiolipin Antibodies
Plasma Free Protein S level
Factor II G20210A
Prothrombin Gene Mutation
Antithrombin III M
Fibrinogen level
APTT (Activited Partial Thromboplastin Time)
APTR

MTHFR (methylenetetrahydrofolate reductase) and connected with this is measurement of your homocysteine levels (The GP may not be able to do this one)

BACTERIAL

Mycoplasma,
Ureaplasma
Bacterial vaginosis
Chlamydia and any other bacterial infections
Varicella Zoster antibodies

Progesterone
Extra progesterone e.g. Gestone (injectible progesterone) may also be needed.
Get progesterone levels checked at the same time as any beta tests (or even 1 week after embryo transfer) to make sure you have adequate levels (especially if you have had a cycle where you have started bleeding before the end of the 2ww).


Immune testing (so called Chicago or Level 2 tests) - to be done by specialist consultant:-

Natural Killer Cells
Cytokines, (TH1, TH2)
Tnf-alpha
DQ Alpha
LAD


Also some information about submitting these tests yourself:

To undertake these tests I contacted and paid the RFU lab directly:
Rosalind Franklin University of Medicine and Science
Clinical Immunology Laboratory
CLIA ID #14D0646416
3333 Green Bay Road
North Chicago
IL 60064
USA

Jen Webber in accounts sent me the blood request form. You will need to put a referring physician on the form.
Direct line ++1 847 578 8345
main ++1 847-578-3444
work fax ++1 847-775-6506
email: clinlab@rosalindfranklin.edu

They faxed me the blood form to take to the clinic where I was having the blood drawn and sent off. (I can send you this form if you IM me your email address). I live in London so I went to the HCA lab at 111 Harley Street:
http://hcainternational.com/CustomPage.a…E1-00508B62BE1F
Main contact details:
HCA Laboratories
43a Wimpole Street,
London,
W1M 7AF
Tel: 020 7486 5091
Fax: 020 7487 2721
This is the lab the ARGC use to send off their bloods with.

I made sure I clearly told HCA I was paying RFU direct and not via them or my clinic. They are more used to dealing with patients from clinics than individuals. I paid £20 bleed fee per person. (DP and I so that came to £40). I then paid £76 fedex for the shipping. The bloods have to be in Chicago by the latest Thursday morning if it includes a cytokine test. So to be on the safe side best to do it from Mon-Tues, but you can also do it Weds. You can also send off bloods yourself. There are guides to shipping bloods to the lab in the file section of the Yahoo Immunology Support Group website. The files include documents necessary to get blood through customs into the US.

Another lovely FF saved even more cash by packaging the blood up herself:
Part of the HCA £76 charge includes all the packaging, instead just labelled the vials with name, DOB and clinic.
There are instructions on the fedex international shipping site, which were:
Clear tape on tops of bottles
Wrap each on individually in paper towel
Place all together in ziploc freezer bag
Put in strong cardboard box with list if contents, e.g.: 11 x 6.0ml blood tubes.
Label with UN label, its a diamond shape, see the fedex site:

http://www.fedex.com/us/services/pdf/PKG…imens_Feb05.pdf

Then fedex give you a clinical pak to put it all in, then print 5 copies of the commercial invoice and the TSCA certificate from the yahoo site and fill out a fedex airwaybill at their office, stuck all docs on the front of the clinical pak.

There are so many vials and so many different bottles it didn't seem worth it for the risk of me mucking it up, but this above guide seems simple and every saving helps. I just filled in the RFU form put my credit card details (so you pay RFU direct not the HCA lab which would be much more expensive) and the name of my fertility consultant in the UK at the top. By a week later I had all of my results back by fax (I had to call RFU to request this) and my UK clinic had also received the results. This saved me a lot of money and knocked about 6 weeks off the time I would have had to wait to arrange them via the UK clinic.
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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Friday, June 4th 2010, 11:03am

Brave Girl, why didn't yo do 'Chicago' in London?
Does it make sense sending blood to US, if it's possible do the test in London?

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Friday, June 4th 2010, 11:24pm

Just to remind breve girl to reply?
So, why US?

BraveGirl

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Monday, June 7th 2010, 8:40am

You cannot get the blood tested in the UK.

The only labortories that can process the tests are in America. You go to a UK clinic who will take your blood and send it off to America. They then send the results back to the UK clinic.
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

Tinks

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Monday, June 7th 2010, 2:49pm

Brave Girl.

I think what pearl meant was why would you not see a clinic in uk ,and let them send off the tests for you - TO the usa insted of you doing it all yourself.

She thinks the post above from ff was your pm stating you sent your bloods to usa by yourself NO doctor did it for you ?

Pearl - the post above from brave girl was copied from another forum - so the post above was not bravegirls words they where another members words from another forum.

The lady from another forum states in the copied post above from brave girl that you can have the tests done and send them off yourself MAYBE its cheaper to do this, i dont know.

To me its to much messing round - added stress to the stress your already under, i.e getting the blood forms to have the bloods and making sure there shipped off in that limited time.

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Monday, June 7th 2010, 4:06pm

What a mess?!

When I asked BG abot her case, I DID think that testing could be done in UK.
Meanwhile, I realised that all UK clinics sent the blood off to US and completely got a picture.
Sorry for confusion I made, girls!

Tinks

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Monday, June 7th 2010, 4:47pm

Pearl i told you in many posts/pms as am sure bravegirl has that you can not have the bloods tested here in the uk - it just seems where going over and over the same talk and what ever we tell you anyway - you dont like our ideas and support your own.

However with out being rude and i am NOT being rude but its best to stick with what you know such as treatments etc as our treatments our given to us for what we have been diagnosed for.

Where as you have NOT been diagnosed with anything therefor we should NOT be telling you what to take and what dosage etc as we are NOT doctors and we wouldnt want you to get poorley.

I dont feel happy telling you what meds and dosage to take anymore as you said you would take them on your own accord etc i would feel terrible if you should get sick.

However you are pregnant now - congratulations - i think its best that you see the doctor you are under who has treated you with your ivig and see what plan he has for you.

As you stated you prefare ivig over intralipids and you get it free - you had queries about steriods but when we told what dosage we take, you said we our taking a bomb dose and felt 10mg would be best.

You seem to know more now inregards to immune protocol and what ever you feel is best for you then follow your own instincts.


You say you are booked in for ivig hope it goes well tomorrow - but a question ? should you be having ivig so soon if you said to me and bravegirl by pm that your period is not due yet and you felt it could still appear - i said it wouldnt if bfp but you said it could - i understand your worries but i think it maybe to early to have the ivig if your period is not due yet best to wait till offical test day and then have ivig.

I myself have given you as much advice that i can and cant give you anymore than what i have already - i wish you the very best with your pregnancy and hope you get the right protocol to suit you.

:smile:

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Monday, June 7th 2010, 9:18pm

Quoted

Pearl i told you in many posts/pms as am sure bravegirl has that you can not have the bloods tested here in the uk - it just seems where going over and over the same talk and what ever we tell you anyway - you dont like our ideas and support your own.


The question for BG was posted before I realised from ur mail how the things work. Thay's what I wrote above.
It's not about liking or not liking your ideas, it's about reasonableness of application. I really would like to know what my problem is, because I wouldn't have any doubt about dealing with it and taking therapy, but at this moment I unfortunatelly don't. But I highly appreciate your suggestions, that's for sure.



Quoted

As you stated you prefare ivig over intralipids and you get it free - you had queries about steriods but when we told what dosage we take, you said we our taking a bomb dose and felt 10mg would be best.


Prefering or not prefering IVIG is not something I didn't even think about. I would take either, but since I've been treated with IVIg, I know my hospital can privide it. Just the other day I heard about intralipids and meanwhile found out there is such thing over here, but why the hospital gave me IVIg istead of intralipid, I don't know. What I know is that intralipids would be free ,as well. I'm just fine with any,so...
Maybe I'm taking risk if not taking 20 mg and maybe 10 wouldn't work to me, but there is a risk anyway, whether taking it or not.

Quoted

You say you are booked in for ivig hope it goes well tomorrow - but a question ? should you be having ivig so soon if you said to me and bravegirl by pm that your period is not due yet and you felt it could still appear - i said it wouldnt if bfp but you said it could - i understand your worries but i think it maybe to early to have the ivig if your period is not due yet best to wait till offical test day and then have ivig.


I was told to call up dr immediately if get pregnant. That's why I booked it today. I had to call today to make sure they have my bottle on stock. Every bottle of IVIG must be strictly acquired p and giving out is more strictly controled. I talked with dr and she said to come for ivig asap. Why, I cannot tell ? Today is the day, nothing 's changed and I'll repeat test first thing in the morning. If there still are both lines, I'm going to get it. If there's one- 'preject' to be postponed. That's all.

After all, I relly don't know what you got upset about. I didn't mean to hurt your feeling or to oppose your therapy.

Any price of my decision will eventually be charged on me!

Tinks

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Monday, June 7th 2010, 9:52pm

I really would like to know what my problem is, because I wouldn't have any doubt about dealing with it and taking therapy, but at this moment I unfortunatelly don't.


Pearl this is why you should see a better doctor as we are not doctors - we can only tell our experiances from what are doctors have told us but this is based on our diagnosis.

Exactly you dont know whats wrong with you so we cant say take this and take that because that drug maybe not be right for you and could cause complecations insted of good.

This is why i dont feel happy telling you what doses etc in other words encourging you to have such medication when you have not been diagnosed with anything - it would be wrong for me to do so which is why i feel you should put across the information both myself and bravegirl have told you with a doctor and see if he can help you.

You said you would take steriods on your own accord and can get them with out seeing a doctor - do you know that when taking steriods you have to be tested for diabetas ? while on this treatment AND that you can not just stop steriods as you can become ill - you have to be weened off them, which is why i feel i shouldnt be encouraging you or anyone elsa in taking such medication with out permission from a doctor.

Prefering or not prefering IVIG is not something I didn't even think about. I would take either, but since I've been treated with IVIg, I know my hospital can privide it.


why the hospital gave me IVIg istead of intralipid, I don't know. What I know is that intralipids would be free ,as well. I'm just fine with any,so..


This is why i said stick to what you know - what treament you have already been given. Ivig and intralipids is what we use anyway with immune disorders, you get either free which is GREAT sticking to the ivig would be sensible.

After all, I relly don't know what you got upset about. I didn't mean to hurt your feeling or to oppose your therapy.



Dont be silly you have not upset me - i am not upset- i just dont feel its right to encourage you to take medication that is NOT gonna be supplied by your gp i.e steriods - i dont want you to get sick.

I know you said the decision is yours but i really feel you need to see a doctor and let him prescribe you the medication not get the steriods yourself.

I did not know you was due on period tomorrow - when i said congrats on bfp you said your period was no where due, when one says that i would suspect it was in a good few days.

I just didnt want you to take your treatment so early in your cycle till your offical test day - looking out for you more than anything.

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Monday, June 7th 2010, 10:43pm

Ooooooohhhh, we could reply to each other forever.
OK let's cut it. Tomorrow (if my period doesn't surprise me during the night) I'll speak to doctors,not only one and I'' ll report decided!
Just to mention that I know things you said about steriods,that all made me reconsider my first impuls ! I got scared! So, that's why I took a step back!

Speak soon and sleep tight!

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Saturday, June 12th 2010, 12:03am

pregnant

Hi girls, haven't been here for a while.
I'm officially pregnant, but still very concerned.
All drs I talked with were explicitely against steroids!
I have to admit that I've never seen more controversal issue of resolving imuno problems.
I still haven't taken any and I had decided not to take, but the more I read, the more doubts I have.
At the moment I'm on Utrogestan (3x2), Faxiparine, Aspiryn, folic acid and magnesium. I had IVIG 2 days ago. Betha hcg was 132 on tuesday, 2 days later 495.
So far, nothing spectacular, but the crises shows up a bit later.
I was adviced to get CRINONE gel, they say it's superb! Haven't got it yet.

I want to reseach some more about steroids,so i'll open a new thread on forum about steroids and having successful outcome! I would like to hear from women who had taken them and then had a healthy baby.
Are there such ladies?

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