Saturday, January 12, 2013

Answers After Almost 6 Years


I'm back finally! Sorry it's been so long since my last post but the truth is there really wasn't a whole lot to tell. For those of you who didn't already know, we have been working with Karen Pace. She is an reproductive immunologist counselor (not doctor). She will tell you which autoimmune tests to have and interpret them for you. She will them recommend a treatment plan for you and get you set up with an actual reproductive immunologist who will work with you in conjunction with your RE. She is also available for you throughout the whole process, even up until delivery should you get pregnant with the treatments.

We started working with Karen in October. There were tons of blood work to get done at various places for various things so it has taken us this long to get it all done with the results. We had our 3 hour  Skype session with Karen Thursday night. Basically she knows exactly why we are experiencing infertility and why we are miscarrying!!!!!! After all these years and 3 losses, no one had ever said those words to me. I felt like screaming because I couldn't believe we could figure this whole thing out from blood tests all along but I also felt like screaming for joy. Guess I should stick with joy. :)

So here's the deal. First of all I have clotting problems which I found out about after my second miscarriage in 2008. Now they actually found one more that can be treated with a high dose of folic acid. We already knew about my clotting but what I didn't do with pregnancy #3 was take Lovenox appropriately. I took it the day I found out I was pregnant because that was the recommendation I was given. Sadly, I should have started my blood thinning shots before trying to conceive. This helps with clotting during implantation. I also have abnormalities with my antiphospholipid antibodies (APA) which is treated with Lovenox and baby aspirin as well. Oh and my thyroid is acting crazy so I have to go back to the regular endocrinologist to get that checked out. I had thyroiditis in 2009 so my guess is I'm having another flare up. The good news is that all of these issues are an easy fix. The rest of my abnormalities are a little more complex.

I also have elevated natural killer cells. We all have NK cells in our bodies to protect us from disease and infections. When they are elevated, they sense the embryo as a foreign object that needs to be destroyed. This can cause very early miscarriages but also can even prevent your embryo from ever implanting. The recommended treatment for this problem (in my case) is IVIG. This treatment is when a home health care nurse comes to your house and hooks you up to an IV with antibodies for at least 3 hours. That part doesn't bother me because at this point I would do absolutely ANYTHING for my baby but it is very expensive. You must do one prior to conception and one when you get pregnant for sure. After that they will test your blood to see how it's working then schedule the sessions as needed. Karen said some girls need only a few while others need it once a month throughout their entire pregnancy. There are some other options if we don't want to spend so much such as intralipids. Have any of you tried intralipids or IVIG? I would love to know about your experiences so we can make a decision. The part that worries me is that we will spend money on the intralipids and it won't work and we will have to do IVIG anyway. We aren't really sure what to do about this.

The last problem I have is a strange one! Apparently, Brad and I have genetically similar DNA. Gross. I promise we aren't cousins even though we are from Tennessee! Anyway, in the beginning of the conception process, the mother's body must recognize her pregnancy as being foreign in order for her body to stimulate the necessary immune reactions to sustain it. When a couple's make-up has similar DNA, the mother does not produce the required antibodies and the pregnancy either never implants or you miscarry early. Sounds about like me doesn't it? I am not producing the anti-paternal lymphocyte antibodies required to protect my babies. The treatment for this is Lymphcyte Immune Therapy (LIT).

LIT is when they draw blood from your husband and the lymphocytes are extracted and made into a serum. Then the serum is injected into the wife's forearm just under the skin. After 3 weeks the process is repeated. It's not that expensive and seems to raise pregnancy rates when this DNA thing is a problem. BUT  guess what? It's not available in the United States. In January 2002, the FDA suspended the use of LIT in the US until they can establish its effectiveness. The only way to get this treatment is to go out of the country and Mexico is the closest place. The immunologist in CA used to perform LIT before it was suspended by the FDA with good results. If Brad and I want to have our own genetic child, then it appears it's off to Mexico (at least twice) to do LIT.  If any of you have done this treatment, please share!!!

So there you have it. Answers. Answers after almost 6 years of pain. Answers after 3 miscarriages of babies who did not survive because of my body. Although I hate my stupid defective body, I did not cause these problems. My issues are medical. It wasn't due to my diet, because I wasn't relaxed enough or  because I did something or didn't do something. I didn't cause my miscarriages because I didn't eat well enough or because I lifted something I shouldn't. We will try these treatments and they may or may not work, but that's OK. It's nice knowing that it's really not my fault. Thank You Jesus for providing us with answers. I will keep you updated!

6 comments:

  1. Wow! What a diagnosis! I am so confused why this service has been banned in the US? Especially if its so inexpensive. As confusing and detailed as the diagnosis is I bet it's great to finally hear some words that are encouraging. Welcome back!

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    1. Apparently LIT is banned due to efficacy. Not because it's unsafe or anything like that so I feel fine using it. If it doesn't work, then OK. But why wouldn't we try it if it may work for that issue? It's actually only around $600 per treatment. The expensive treatment is IVIG. The cheapest one I could find was $2,000 per treatment! Ick!

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  2. Oh my gosh, I'm soooo excited that you have answers!!! This is great!

    Your clotting issues sound a lot like mine! I had to take Lovenox early in my cycle. As well as baby aspirin and lots of Folate.

    My hubby and I also have similar DNA, but we didn't end up needing any treatment for it. We thought that was a funny one though! I heard about LIT, but we were not recommended for it. I guess there's a debate about that one among the immune specialists.

    Dr. Sher said I had activated NK Cells, but when Dr. Kwak-Kim checked, she said mine weren't high enough thankfully. I didn't end up needing IVIG or intralipids. I've heard of those treatments working wonders for other people though!

    It's tricky stuff, but it can be treated - which is awesome!! I'm very hopeful for you & glad to see your update. Thanks for the support on my blog - you are so sweet! xoxo Hugs & prayers.

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  3. You should read Which Way To Baby: http://whichwaytobaby.blogspot.com/

    Rebecca had so many miscarriages, and traveled to Mexico to do IVF with LIT. They now have a one year old daughter.

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  4. I certainly hope no one told you that you caused your miscarriages. And I'm so glad that you have answers after all this time. I can't imagine how hard it must be to lose 3 babies. My heart goes out to you. Hope these answers help you overcome your medical obstacles.

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  5. I just found your blog today and have added it to my blog list. Sounds like you have been through so much, and I admire your willingness to go all the way with immunology testing and treatment. Wishing you the very best in your journey to conceive!

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