Anyone have antibody issues? long story about finding an answer

sandykins

Haven't posted in a while but wanted to provide a little update on us. I had come to the determination that we'd never find out why Conner died. Well, I randomly had to go to an ent specialist bc of a very annoying ear infection. He mentioned my "butterfly rash" and asked me if I ever had it checked out. I have rosy cheeks and a little red across my nose. It doesn't look like a rash but looks like I've been sun kissed. I never thought anything of it bc I've had it my whole life. I just thought I had cute rosy cheeks. I googled it and it is a major symptom of lupus. And some women with lupus have this antibody issue that causes blood clots in the placenta, inhibits pplacental growth and causes losses sometime in the 2nd trimester. I lost Connor at 20 weeks and the placenta was very small. So I connected the dots, went to a rheumatologist and am being tested. My cardiolipin (sp?) antibodies are indeed elevated. We still have a long wrong ahead of us for a diagnosis and I still need a lot of blood work done but I feel like for the first time- we are headed for an answer. 

Anyway- my question is has anybody dealt with antibody issues? Can you share your experiences?  

sandykins

Pardon the typos. Stupid iPhone. Long road not wrong 

Carolee

I tested positive for antiphospholipid antibodies, and I tested positive for lupus anticoagulant but negative for lupus.  I don't know if this is my answer for what caused Eliott's death, but I'm now being seen by a hematologist and have to take Lovenox.  In some ways, knowing about this is a relief because it can be treated.  In others, it makes me more worried.  I hope you're able to get some answers soon.

KarlsSweetie05

*** Ticker Warning ***

 

First, I am so sorry for your loss.

Over on the Infertility Veterans board, there are posts about possible autoimmune and blood clotting disorders causing infertility / loss.  You will have to weed through the posts unfortunately.

In a nutshell, there are just a handful of Reproductive Immunologist (RI) specialists in the US and the field is considered "controversial".  A lot of doctors don't believe in it because there is no research studies to back up claims.  But it does seem to be a "misisng link" in why some people are unable to get pg / stay pg. 

Off top of head, there are 4 RI that I can think of in US - 2 in CA, 1 in Chicago, and 1 on East Coast (NY area I believe). There are several others I believe too.  If you post over there and ask for dr names, you might get an answer on the NY area dr (I see you are in NJ).   I can't think of his name for the life of me, sorry.

There is a book by Dr. Alan Beers called "Is Your Body Baby Friendly?" that goes into great detail about all kinds of clotting disorders and autoimmune diseases and their effect on pregnancy that you might find helpful.  https://www.amazon.com/Your-Body-Baby-Friendly-Unexplained-Infertility/dp/0978507800/ref=sr_1_1?s=books&ie=UTF8&qid=1340265520&sr=1-1&keywords=is+your+body+baby+friendly

KarlsSweetie05

found an article on topic

https://www.theafa.org/blog/lupus-infertility-and-pregnancy/