Hi Ladies,

You may remember that I posted several months ago after my 4th tx failed.  After that, and at your suggestion I went to see Dr Gorgy for further immune tests, as the Lister had already done all of their tests on me and told me that I did not have any immune issues.  The tests I had done with Dr G tell a different story and have shown 3 different immune issues and a MTHFR gene mutation.

I'm still a bit of a novice at all this, so I hope that these test results make sense to some of you:

NKCs - 50:1 = 18.3 (should be below 15), CD56 = 19.8 (should be below 12), CD19+ cells, CD5+ = 42.1 (should be below 10).  He is suggesting IVIG or possibly a combination of IVIG and Intralipids to treat this.

LAD IgG+ = 6.9 (I don't know what the normal level is, but this is abnormal) and B Cells IgG+ = 20.  He told me that my level of 20 indicates that I have been pregnant in the past, just not able to hold onto it long enough for a positive test.  He wants me to have LIT to raise these levels.

TNF-Alpha = 50.3 (should be less than 25, yikes!  )

As I mentioned I also have the MTHFR mutation, so he is recommending high dose folic acid and clexane.

I guess I'm pretty shocked that even though I suspected I had immune issues, that all of my tests have come back with something abnormal.  Dr G has assured me that he can treat each of the issues, but I guess I wondered if any of you ladies could inspire me with stories of success???  Starting at square 1 after 4 failed tx already under my belt is quite daunting. 

Thanks,

bankie

From: Zoe Smith <zoeandsam14@...>
Subject: Re: [immunologysupport] UK Doctor dismissive of Immuniolgy tests..........??
To: immunologysupport@yahoogroups.com
Date: Saturday, 4 July, 2009, 1:11 PM

Hi Mandy,

 

It was Dr Rai who i saw who told me the immune blood tests were a waste of money. He has suggested a hysteroscopy and uterine biopsy as i have had 8 miscarriage 5/6 weeks and an ectopic at 8+3 weeks (and still alive) suspects something wrong with uterus! I spoke to him about Steroids and he didnt respond maybe after the result of the op i will speak to him again about steriods or looks like i am going to have 2 go private and pay 4 NK Cell tests despite Dr Rai's opinions because i feel as though i am running out of options. I have thought about paying for the uterine biopsy (£480) at LWH but then i thought the blood immune tests maybe better as they test for more than NKcells but according to Rai they r rubbish!!. I know i have had all the blood tests available 2 me at St Marys and they told me i have FVL. Its all so confusing and contradicting  I know i need 2 make a decision as i cant afford to have both:(

 

Thanks for reply

Zoe

x

---

From: Mandy Cairns <manders41@yahoo. co.uk>
To: immunologysupport@ yahoogroups. .com
Sent: Saturday, July 4, 2009 12:52:17 PM
Subject: Re: [immunologysupport] UK Doctor dismissive of Immuniolgy tests....... ....??

I think you can self-pay at L'pool for the tests if you want to go this route Zoe and not take part in the trial. But if you want to cover all bases then seeing someone who does all the tests would be a better bet, like CARE or Dr Gorgy. I think with St Marys being an NHS hospital they can only really recommend NHS. I think I said before but I know Dr Rai at St Marys has definitely used steroids on patients. I think he also consults privately, certainly last year he did it thru Zita West. I know this part of the journey is very stressful. I found it very much so, all the searching and making sure we were making the right decisions. I can assure you once you find someone to help you and you are being 'heard' it makes a big difference.   GL with your decision.   X+x  41, 1 DS aged 6 5 m/cs, over 3 yrs ttc #2 Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD Currently on : Menevit plus extra FA, 25 mcg thyroxine, fish oils.    Protocol : Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.   At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks   Reflexology, acupuncture, herbs and gluten free --- On Fri, 3/7/09, zoeandsam14 <zoeandsam14@ yahoo.com> wrote: From: zoeandsam14 <zoeandsam14@ yahoo.com> Subject: [immunologysupport] UK Doctor dismissive of Immuniolgy tests....... ...?? To: immunologysupport@ yahoogroups. com Date: Friday, 3 July, 2009, 5:22 PM Hi there, I recently met with a Doctor at St Marys hospital in London for tests for Recurrent Misscarriage i have Factor V Leiden (blood clotting) I have had all availiable tests and treatment and am still suffering miscarriage all at 5/6 weeks. I asked his opinion on the NK Cells and the blood tests which are sent to the Beer Centre in the US. He said that they were a complete waste of time and money. His reasoning was that you can not tell the amount of NKCells in the uterus by bloods he said that 100% I would be wasting my money! However he does support Siobhan Quenby work in Liverpools Women clinic as she is the ONLY clinic in th UK to test endometrium lining for NK Cells. She will not see me in her cinic as i have a "reason" for my miscarriages (blood clottting)although after using blood thinners i am still miscarriaging. The immune tests were really my last hope but they have kind of been shattered as my Doc said they are a load of rubbish!!?? What are your thoughts??? Zoe x