Sunday, December 26, 2010

Lyme and Worrying About Miscarriage

I am a miscarriage magnet. In the past five years I’ve had five; most ended super early and they vacated on their own, but the last was a set of twins that stuck around a while before I needed a D&C, and I was quite attached to them. OK, that’s an understatement. My world was turned completely upside down for a good while, and the only way I was completely able to move on is when I conceived again and carried a baby to term.

Whether it’s right or wrong, I don’t think much now about the babies I lost. That wasn’t always the case, but when I was finally given the gift of a healthy baby, I felt that the fulfillment I got from being his mother was plenty enough for me, and I’ve been content ever since I had him.

Sometimes in my thoughts I can reduce the miscarriages all the way down to simple balls of cells with chromosomal abnormalities--defects of nature--and that my grief over the losses was based solely on my own disappointment (I soooo wanted to be a mom and I had my hopes up for nothing). Sometimes it’s not that easy. Or other times, if I’m feeling “cosmic”, I view them as souls that weren’t ready to sign on for the specific life my husband and I would have provided. I even recall my husband saying, “It must have changed its mind-- it signed up for the job but then it read our file and was like oh hellll no, these people are nuts! But it’s OK--someday we’ll get a tougher one who can handle us, and that one is meant for us when it’s ready.”

Regardless of how normal or abnormal my husband’s and my coping mechanisms are, I feel like there is one miscarriage thought most of us Lymies have in common, and that is the heart-dropping-to-your-gut feeling when you discover you’re miscarrying and you immediately curse your body for failing (yet again).

I think it’s a given now, even to the skeptical doctors, that Lyme and Co. can cause miscarriages and fetal abnormalities. We see this a lot in women that didn’t know they had Lyme and had trouble conceiving and/or carrying... it seems to click with them once they finally get a diagnosis: “My whole system is shot and infested with bacteria--no wonder I couldn’t carry a baby.” And that’s when the guilt, anxiety, disappointment, depression, or whatever you want to call it sets in, and what all of those words really mean is, “Lyme is ruining my life, my partner’s life, and now it just ruined my baby’s.”

For the most part, these miscarriages happen very early on--(though I’m sure people would be quick to report some rare exceptions), and the further along you are in treatment, the better your chances of a successful pregnancy. Of course, this is why the doctors stress pregnancy-safe antibiotics ASAP. Some (not all) will even treat your pregnancy as high-risk and will take extra precautions to make sure your baby’s growth is monitored from the beginning.

Some might disagree, but I feel like many of us are quick to blame all miscarriages on Lyme Disease, much like every ache and pain some of us experience is attributed to the disease as well. Is it ever possible to just have a bad headache without it being a cranial nerve flare-up? Could the bloated painful belly be due to the fact that you ate a ton of ice-cream and you’re on dairy overload? Can a miscarriage just be a miscarriage? Sure it can. After all, early miscarriages happen so often in all types of women, Lyme ridden or not (according to the American Pregnancy Association, there’s a 15-20% chance in healthy women). But unless the fetus is tested for spirochetes, there’s no way of telling for sure.

I have to admit that I’m incredibly afraid of a miscarriage right now, just based on past experience.

Does this have to have a bad outcome? Probably not. My hormone levels are rising as they should, I’ve already started getting morning sickness, and I’m cranky as hell. I mean, reallly cranky. Plus, I’m bloated beyond belief, my boobs are huge and they hurt like a mofo, and toothpaste is still disgusting. To me, that indicates all systems go.

But as you know, it’s hard. You want to get excited because this really is one of the most greatest experiences on the planet, but you’ve seen (or heard about) the outcome for many with our disease.

Lately I find myself superstitious when I normally pretty level-headed. For instance, I’ll tell myself that if I get rid of my old maternity clothes, this pregnancy will stick due to Murphy’s Law. I can’t even start thinking of names yet, unless I consider “NewBaby” a name, because that will surely lead to another miscarriage, and it sucks mourning something you’ve already named. I’m already expecting dooms day to happen because I’ve shared all of this info with you before the recommended 12 weeks! (Trust me, I struggled over when to post about the pregnancy but figured I’d tell you all if I miscarried after the fact, so I might as well include you on the pregnancy journey as it unfolds.)

I’m scared, as I know many of you are, because a lot of you have experienced the same kind of loss before.

But you know there is always a hint of hope in these posts:

If we let our fears about the past stop us, we will never have children to love. Quite frankly, I can’t imagine life without my son, and each of those miscarriages was worth it to get him in the end. Will it be 12+ weeks of self-inflicted torture in the beginning (OMG I haven’t felt like puking for over an hour!--am I still pregnant?!?!)? Most definitely, and if you have a cure for that, please share.

For now, I will sit here and eagerly await the first ultrasound (January 4th), blowing things out of proportion, and then talking myself down to a more optimistic, rational state. Seriously, if you’re scared of Lyme pregnancy, you’re not the only one. We have a lot at stake here, because our health is so unreliable and we are conditioned now to expect the worst. But life only happens when we give it a chance to, right? I guess I’d rather take the risk and be nervous about a miscarriage than regret the time I spent wondering what could have been. My fingers are crossed for all of you in the same boat right now.

And hey, Lyme moms: please share how you’ve gotten through this anxious time in the past. Also, if you’re a nervous, newly pregnant Lymie, go ahead and express your fears here if you like. Knowing that we’re not alone in this is comforting.

*Note: I’d like to share statistics and studies about miscarriage occurrences in Lyme patients, but honestly, whenever I research these findings I just get pissed off. There’s so much conflicting info out there, and I refuse to be part of the group of Lymie fear mongers on a mission to prove that Lyme is going to kill your fetus before you’ve even thought of conceiving it. Most of these studies were done on mice anyway, and I’m not comfortable believing any test that’s not based on humans.


  1. My miscarriage was hard on me, because I had convinced myself that what had happened (unplanned pregnancy) was meant to be, and then, it was taken away. :( I am doing a little better with it now, but I think everything happens for a reason, and so did that pregnancy. I am a different person because of it.

    Anyways, what helped me was talking to the baby. At one point, the ultrasound wasn't looking promising, but I hadn't miscarried yet, or shown signs of that (Hcg was still extremely high) we just weren't sure. One night I talked to the embryo/"baby," in a moment of prayer/meditation. I said, "If you need to go up to heaven, that's fine. Do whatever is right for you. I support you no matter what ends up being the best thing."

    It helped me a lot. It made me realize that whatever was the best thing for the little one would end up happening, and it felt good to relinquish the power to someone else, and just be supportive and happy that whatever the baby/soul needed was what would happen.

    I'm not sure if that makes sense or not. I still mourn the loss, but I believe the baby is in heaven, and I believe she's (using she as example) looking down on me, and I believe she feels better knowing that I was okay with the loss, and told her I would be okay if she had to leave, and that I would welcome her if she decided to stay.

    I guess that's being a good parent? (asking because I don't know) Telling them you'll support them no matter what ends up being the result. Silly as it sounds, I didn't want the baby to worry about me if it had to leave.


  2. ps---Hope that story wasn't too much of a downer for this situation.

    I am sure everything will be great. I think positive thinking is important, silly as that sounds. I did feel better after telling the baby, "....whatever is best for you."

    But until you have reason to think something isn't right, I think it's best to just take care of yourself, and know that whatever is meant to happen will happen. I have a good feeling about this, considering your last pregnancy resulted in such a beautiful blessing. CONGRATS!


  3. Much congratulations!! Although the next year might be much harder, in the long run having a playmate for you child would make things easier on you (coming from a mom who was stricken VERY ILL with a toddler) . My daughter is five now and I we may try for a second this spring. I am having a hard time imagining how I will fare without my rife machine and it is a very scary thought for me that I will have to get back on the antibiotic roller coaster.
    A very happy 2011 to you!

  4. When I had my miscarriage I had set all my hopes in the PREGNANCY because I thought it would make the rest of my time without my husband go quicker and happier (we got pregnant when he was home for R&R from Iraq). Plus, when pregnant, my pain and debilitating fatigue would disappear so I felt a lot better than I normally did.

    So when I lost the baby it was very easy for me to get depressed because of the hope I had set in the wrong thing. And also to start wondering if it was MY fault because my body was broken.

    But in the end, with the reminder of friends, I realized it was out of my hands and that God was in control. He knew how many days that little baby's heart would beat and some day my husband and I will get to meet that little one in heaven.

    I spent a lot of time trying to find some sort of "meaning" or "lesson" from the whole ordeal but I still can't. I guess we can't always know why we were put through certain trials.

    I got through the sadness by sharing the news with friends who had compassion on me and did simple things like send encouraging notes to making me dinners since they knew I wouldn't feel up for that kind of thing for a while since I was feeling blue. It was great to have the support of family and friends and you'd be surprised how many of them confessed to me that they had had multiple miscarriages (and they weren't even "ill" to begin with!) before they went on to have 3 or 4 kids. That made me feel a lot more normal and stop blaming myself for the loss.

    When I got pregnant the third time, it was much different than the first pregnancy (my miscarriage was my second pregnancy). I had no hint that anything could go wrong with my first one. But now in the third one I had to fight worry all the time. I was nauseous and vomiting nearly constantly but if I even had 5 minutes that I wasn't, I would wonder if something had happened. I learned to laugh at myself during the moments and just trust the little baby to God and pray for a healthy outcome.

    I know people say not to worry but I think a little worry is fine :) As long as it doesn't take away from ENJOYING the excitement of life growing inside of you! :) So anyway -- that was my experience.

    Congrats again. Two kiddos has been very fun for me and has brought so much joy even while I've been extremely ill raising them. I've never regretted having them, even if I had known I was going to be this ill.

    Sorry to ramble!

  5. I'm sorry I've left these comments sitting for so long without a response. I think subconsciously I've been avoiding all thoughts of anything bad happening. Thank you for sharing your stories.

    Hoos, I LOVED reading about your communication with the baby. What a beautiful way to remember her in a positive way and understand that what happened was out of your hands. I hope you are well enough to try again soon (when you're ready, of course). You are such a compassionate person and you're a great mom.

    Heather--you are blessed to have such a wonderful support system. Sometimes when we're suffering a loss (or living with a serious illness) we feel alone even if we're surrounded by people. It's funny how some of these people open up and reveal that they've experienced the same kind of loss. You do feel a little more "normal," and you start to realize, "Hey, it's not my fault. This affects all kinds of women, not just the sick ones."
    Your girls are beautiful!

  6. I was diagnosed with lyme disease over a year ago. After the fact I had a miscarriage but am now pregnant again. I just came back from my first ultrasound at 5 weeks and the doc said the sac is abnormal again and I may miscarry but it is still to soon to tell for sure. I started researching and just found out that women with Lyme have a harder time with pregnancy, but am also having trouble finding any good research on it. I would like to know if you ended up having luck with your pregnancy i am so upset today to find out my sac is abnormal I really want another child.

  7. I'm so sorry to hear about your pregnancy struggles! :( I hope that everything turns out well, and that this was only a matter of the ultrasound being done too early.
    I am relieved and happy to report that since my miscarriages (and after some antibiotic treatment) I have had two very successful pregnancies, and I now have two beautiful, healthy children. It just took a long time.
    For some reason, it was very easy for me to conceive and have viable pregnancies immediately after I had a D&C for my last miscarriage (2009). I don't know if I can give full credit to the procedure, but as soon as I had it, I felt better immediately, and my reproductive system actually started working. I had my first viable pregnancy three months later.
    I wish you the best and hope everything works out ok. Please email me if you have questions or just want to talk.

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