[waiting2long]

Hello,
I just had an immunological assay done and was told that my Natural Killer (NK) cells and my antinuclear antibody levels are elevated. The specialist is recommending that I do IVIG for 3 days but the cost is enormous and there is no proof that it does help getting pregnant. I've failed two IVF cycles so far (fresh and frozen) and my gut told me that my body was rejecting the embryos. I know that this area of infertility is highly controversial so I am trying to weigh my options carefully. Are there other methods of helping balance the NK cells? I already do acupuncture every week, take herbs, vitamins, etc...
Help!! We've been trying for 3 yrs. and I'm not getting any younger.

Thank you!

 

[Flopsy]

Dear Waiting,

You will find a few of us here in a similar position. I have also had the NK test and have had the IVIG's - sadly, my cycles still failed. I don't have the complication of the elevated ANA so no experience in that area sorry.

You will find some IVIG discussions here

http://www.fertilityfriends.co.uk/forum/index.php/board,52.0.html

I've been trying to keep a poll going of immune treatment results here

http://www.fertilityfriends.co.uk/forum/index.php/topic,9273.0.html

There is a seperate Yahoo group of women with similar problems here

http://health.groups.yahoo.com/group/immunologysupport/

You will also find some experienced people under the various clinic threads on Fertility Friends - i.e for the Lister, ARGC etc.

With regards to natural stuff the most common things used for NK cells is fish oils. This has been discussed a lot on the Immunology Support group (the Yahoo) one.

I did try this but it didn't help as I still experienced the same immune symptoms on the 2ww (sore throat, glands, night sweats) as before and these did not go until I tried Humira.

Hope that this helps. It's such an enormous topic.

With warmest regards,

 

[waiting2long]

Dear Flopsy,

Thank you so much for responding and for sharing your own story. I'm definitely going to check out these sites. You sound exactly like me with the swollen glands, sore throat and night sweats. You are the only one I know who can relate to that...now I know I'm not alone. I also suffer from Epstein-Barr so I think there is correlation to the elevated NK cells. Of course there is no treatment for EPV either. I'm so sad to hear that there are so many on this board that are experiencing the same problems. It's such a helpless feeling to have the facts but not able to do anything about it. I guess we just have to deal the best we can and somehow keep our hope alive.

Thanks again!

 

[night nurse]

Hi waiting2long

Just wanted to ask if your ANA levels were due to your epstein Barr?  The reason I ask is that I have systemic sclerosis - an autoimmune disease with a postive ANA.  I have no idea of the levels though.

I am about to do my first IVf cycle following two -ve iuis, and have been thinking a lot about these NK killer cells.  I never catch a cold or anything else, I get a sore throat perhaps and swollen glands but thats it.  So I know my immune sytem is overactive.

As far as fish oils go I am a bit wary of taking anything that will enhance my immune system as its already in overdrive .  I conceived my two childrent hough before I had this disease so am now naturally worried about my chances.

Thanks for listening
NN xx

 

[Flopsy]

Hi Waiting,

Sorry to hear about the EBV. I get reactivated bouts of it as well pls I have a neurological disease. Sendng lots of sympathy with you.

It's difficult to get treatment in the UK but friends in the USA try anti-virals. There are a few for the Herpes group of families.

Someone on the Immunology Support group was recently discussing a possible raise in her NK cells and wondering if it was due to a Herpes outbreak. This may be relevant to those if us who get recurrent attacks of other members of that virus family.

On thing I forgot to post last night is that Dr ******* does a test for NK cells and then uses the steroid Predislone instead of IVIG. I don't know if this is an alternative that you could consider? Just an idea.

Also Dr Carter (another USA doctor) has started working with the ARGC and the Lister. Last year I spoke with him on the phone for a long time and he has some interesting ideas (doesn't like IVIG etc). He has a message board that you can post to.

http://www.multiplemiscarriage.com/forum/viewtopic.php?t=95

Probably too much information - we are spoiled with "choice" but all costs money and there is little published work to back it up!

Hope that this helps.

With warmest regards,

 

[waiting2long]

Dear Flopsy & Nightnurse,

I've been reading alot since I found out about NK cells and the ANA. My primary physician suggested that the Prednisone may be able to take care of not only the ANA problem but the NK. It is a possible alternative to IVIG as you suggested. The only negative about Prednisone is that it can cause bloating, weight gain, facial hair (yuck!) and other unpleasant side-effects. But I'm told it doesn't happen to everyone. Thing I can't understand is that my nephew who has Leukemia takes Prednisone right before going through Chemo. Why would they want to suppress his system--shouldn't it be the other way around to fight off the cancer?

As for the IVIG--I am in the states and the cost is outrageous. It costs approx. $70/mg (equivalent to 150 quid) and the nurse fees are like $80/hr.--if you need IVIG for the 1st trimester, be prepared to spend about $10-20,000! I've spoken to several women who have done IVIG and still failed to get pregnant via IVF. With such low stats, I'm going to forgo IVIG all together. I've been told that our antibodies can go up and down on any given day so who's not to say ours won't regulate? I can only hope and pray.

Question for those of you in the UK--how much does a typical IVF cycle cost there, minus the stims? Just curious how your rates compare to the U.S.

Thanks,
Waiting2long