As promised, here is the post all about Reproductive Immunology. Not sure if it makes much sense, but it’s something. Also, apologies if it’s repetitive. I actually wrote it a couple weeks ago.
On a good note, I think I am finally, after four days and hours of phone calls between me, my insurance, my OB/GYN, and the lab, getting my blood tests done tomorrow. Woo hoo! I also had a (free) consult with my mom’s chiropractor last night and found out that the right side of my spine is totally out of whack and my hips are “stuck” in one position. So hopefully I can get adjusted soon.
Apologies in advance if this post gets a bit too boring or technical. I am going to try to organize my thoughts logically here, but there is just so much going on in my brain. Also, sorry if none of this information is relevant. But if you suffer from recurrent miscarriages, unexplained infertility or IVF failure, there may be something of interest in the following mess of information. Here is my best attempt at working out the crazy wheels a’spinning in my head.
My mom bought me the book “Is Your Body Baby Friendly?” by Dr. Alan Beer. I knew that I would like it better than the “prevent miscarriage by ceasing your daily coke habit” book with just one glance – this book was THICK and HEAVY. It demanded respect. It sparked a little current of hope in me before I even opened the cover.
I’m not here to plug this book, per se, because I can’t speak to its effectiveness just yet. I will say that for $20, it’s definitely a worthy read if you suffer from any of the aforementioned problems. The first thing the book does is point out the absurdity of chalking up miscarriage and IVF failure to bad luck. The goal of Reproductive Immunology (RI) is to determine the source of these problems, and then to treat them. The authors are indignant that RE’s accept failure after failure or that anyone would say it was just “meant to happen that way.” They argue that a woman’s body was designed to accept and nurture pregnancy. When it fails, there is a reason for it. And – you guessed it – most of these problems can be solved with the help of RI.
The book spends a lot of time defending the field itself, citing examples of people calling Reproductive Immunologists “crazy whack jobs who are just out to get your money.” They follow up with proof of their success, describing women who had suffered seven or ten or (God forbid) thirteen miscarriages who carried babies to term by using their prescribed treatments. The book was full of hope, a lot of very in-depth technical explanations and a few logical reasons for recurrent miscarriage. Even if they’re wrong (which I doubt), the fact that SOMEONE was finally trying to explain and treat the mysterious tragedy of miscarriage made me want to weep with relief.
One thing I really enjoyed was that they laid out all the potential immune system problems AND the treatments. So basically I just saved myself $900 on a consult, because I already know what to do, right? Kind of. Here’s the thing: as I already said, Dr. L was so on point by prescribing Prednisone and baby aspirin. I’m so happy she did, because if she hadn’t, I’d be sitting here wondering if something as simple as that could have saved Baby Toast. Since many women they treat aren’t infertile, they also recommend estrogen supplements and Progesterone shots. And I’m like, I did IVF, I already have all that down on lock. It looks like I’ll be needing something even more advanced.
The most effective (if I’m reading correctly) treatment of immune system craziness seems to be IVIg injections. You have to pay a qualified nurse to administer them, they take several hours and you get injected with other people’s blood for $5,000 a session. Insurance doesn’t cover it because proof of effectiveness has not been established (and you can bet your ass that I’ve already searched for clinical trials). I’m going to say this again – $5,000 per session, and you need several throughout your pregnancy. So it doesn’t even matter if I want it, because ain’t no way in hell I’m getting it. Remind me again why I wasn’t born a millionaire?
So. Moving on. The only other thing that I haven’t been prescribed and that I can afford (possibly) is Lovenox injections to stimulate blood flow and Heparin injections (usually used to treat rhematoid arthritis) to balance out ANA antibodies. That’s a lot of injections. Not like I care. But throwing things at the wall and seeing what sticks – is that a healthful approach? Does any of this make sense for me?
So you know how when you’re going through infertility blogs, you look for someone who has a similar background and struggle to yourself? And you follow that person, hoping that your paths will be similar, especially if that path ends with a healthy baby? And it makes you feel so much less alone? I’m beginning to think I’ll never have that. I feel so different from everyone else. First of all, I had a pretty cut-and-dried case of infertility. The sperm analysis told the story of why we weren’t conceiving. We did IVF. It worked. Problem solved, right? Well no, then I had this whole other incredibly complicated problem. Not to be all “woe is me,” but I think I got dealt a pretty shitty hand here. We spent years solving one problem only to find another giant, mysterious, awful, basically unsolvable complication behind it. Sorry to sound like a broken record, but it’s just so damn frustrating. When will we catch a break?
As I’ve mentioned (perhaps ad nauseum), I have never, in all my research, found someone whose food intolerance seemed linked to their miscarriages. I feel like I’m trying to solve some unsolvable mystery here. There’s a short little section in the book that discusses elevated levels of eosinophils and asthma and the possible link to miscarriage, but it’s a tiny little snippet and it doesn’t discuss food at all. I cannot be the only person on earth who has had this happen. But am I supposed to waste $5,000 on other people’s plasma in case I have these killer cells, when really it seems like food intolerance is the issue? If I could just find someone with similar issues, I could follow her protocol. But I am alone here. There is no one like me at all. (As Amy pointed out, gluten allergies have been linked to miscarriage, ’tis true. I think that’s a fairly new school of thought and it’s not mentioned in the book at all. But you can bet your ass gluten is akin to rat poison when it comes to my new diet).
Here is what I know: my body attacked healthy, normal growing babies. That is not normal. Something inside of me is not right, and that thing needs to be corrected. I had my heart set on Bland Diet so I could absolutely ensure that my food intolerance didn’t cause my immune system to overreact. But this book… it’s making me question if the problem runs deeper than that. Maybe the food reactions are just a symptom, not a cause. And lets be honest, the term “NK Killer Cells” is really scary. It’s been haunting me daily since I saw it.
Yup, I’m talking in circles. I’m sorry. I’m happy that I read this book and that people don’t just throw up their hands and say, “It’s God’s will!” I absolutely believe in God, but I also believe that God gave us scientists to solve these problems so we don’t have to just suffer through them. Interestingly, the book includes an entire chapter on Eastern medicine (though Dr. Beer cautions that these remedies should be used in addition to, and not in place of, his protocols). The author of the holistic approach section starts out by saying she’s skeptical of using too many drugs and foreign substances. She, of course, recommends acupuncture and a peaceful diet. I like the idea of that. But is it enough?
So many questions, not a lot of answers. I don’t want to leave things to chance, but I don’t really think I have a choice.
I have, like, a week to figure this out. I feel like the answer is there, I just need to find it. Maybe that’s naive… maybe that’s crazy… yeah, it’s both. Definitely both.