Friday, February 18, 2011

A New Perspective on Lyme Pregnancy (Intro)

Well, I had a good run. Twelve solid weeks of feeling better than I had in years--bouncing Wyatt around the house, running up and down the stairs to grab baby supplies, passing on a nap so that I could wash dishes or clean up so my husband wouldn't have to do it once he got home. I've been entirely grateful for every "normal" minute I spent during my first trimester.

Sadly, my glory run seems to be over (for now at least). Not sure what happened, but I hit thirteen weeks last week, and all hell broke loose. Strange, considering the second trimester is supposed to be the best. I can hardly feel my arms and legs. Sometimes my legs are so weak, I have to physically lift them with my arms to adjust my position in a chair. I am twitching and exhausted. By blood sugar is all whacked out. In the span of a week I've forgotten my husband's cell phone number, my debit pin, and my middle name. No joke. How does one go from dancing around with a baby, playing the joyous role of happy mom, to being a housebound, brain dead invalid in a week!? And while I'm on a roll here, how come I only forget the important things? Why can't I forget my weight, my credit card balance, or any of the arrogant doctors who told me I was a nutjob? :)

It all beats the hell out of me.

I've been in treatment for three years, and while I didn't expect to be running marathons at this point, I thought (and desperately hoped) I'd at least have some stability with my health. I think what I hate most about Lyme is its unpredictable nature. You never know when you're going to have an attack, and in turn, that makes you an unreliable person. I've cancelled appointments and plans left and right, and I'm definitely not going to drive around town with my baby when I could faint or have double, spinning vision at a moment's notice.

Pregnancy is probably not the time to start exploring millions of options, but I started thinking that after three years of blasting this crap with antibiotics and getting short term positive results at best, it might be time to try a different approach. I'm not saying I'd ever go off antibiotics during pregnancy. (PREGNANT LYMIES NEED ANTIBIOTICS!) I just felt like maybe I was missing something important.

When I find doctors I like, I give them 90% of my trust. The only person I give 100% to is myself, as I've learned to fully trust my instincts over the years when my body is involved. My gut said find a different LLMD. The next day, a new fellow pregnant Lymie friend recommended her doctor to me.

He happened to be an hour away, and he's a D.O. (Doctor of Osteopathy), meaning even though he treats like your average doctor with antibiotics and such, he also focuses on mind, body, and spirit as a whole. D.O. work to get your body back in balance, toward wellness, instead of just finding a disease and blasting away at it. Just to note, my other LLMD does this to some extent, as well, but not to the extent that new guy does it.

Anyway, I saw the new LLMD yesterday, and even though he told me the same thing my other LLMD told me (Due to my allergies to all penicillins, I am pretty much stuck with Zithromax, whether it helps my symptoms or not. I just have to suck it up through the pregnancy, and we'll kick some butt after I give birth) he also shed some new light on Lyme pregnancy. Here are a few things I learned or had reaffirmed:

* Antibiotics are a must during pregnancy. If you're untreated, you have about a 50/50 shot of passing it on to your baby. If you're on one antibiotic, there's a slim chance you'll pass it on but not likely. If you're on two antibiotics (an intracellular like Zithromax and one that tackles the outer cell, like Omnicef or another cephalosporin) there's basically zero chance of congenital transmission. I'm curious to see actual studies and real numbers--this is something I will ask about next time I see him

* Like the two other LLMDs I've seen, this one says absolutely no breastfeeding and that it can pass through milk

* He's having me hold off on testing Wyatt (at nearly 7 months old), because the cord blood test came back negative, and that's pretty much a guarantee that things are fine. We will still look for unusual symptoms, but for now, we won't mess with anything that's not broken

* Probioitcs are just as crucial as antibiotics during pregnancy (I've always been a slacker when it comes to taking them, but now I know better. Our digestive tracts get messed up during pregnancy, and we have to keep our guts in line. Our symptoms will flare otherwise

* Simply blasting away at Lyme and Co. with antibiotics will only get you so far. We also have to heal the other parts of our bodies that Lyme has broken. During pregnancy, doctors aren't going to treat super aggressively, so it's a perfect time to work on other aspects of healing while you're coasting (in some cases suffering) through nine months of a "holding pattern" type of regiment. Those other aspects include your digestive health, fine tuning your diet, getting some exercise (I don't mean heavy cardio or anything--start SMALL), detox, meditate, SLEEP.

Most of my questions at this initial meeting were about my specific Lyme case and I didn't have time to grill him on pregnancy stuff. He had to hear my story and assess my health before anything else could happen, so when I see him again next month I'll get more into the pregnancy issues. I'll then post a Q&A style report.

In the meantime, please forgive the infrequent posts. I'm struggling with symptoms right now (though I think the worst is over --I was actually able to walk down the street to the mailboxes today, which doesn't sound like much, but you should have seen my sorry butt a few days ago...)

If you have specific questions on areas I didn't cover, feel free to email me. I'm not sure how much to write publicly about my specific ailments and treatment plan-- I try to make topics accessible to everyone, so for now I'm sparing you details. This doctor was great and full of interesting things to say about Lyme and Co. in general, so I'm up for comparing notes.

Finally, since I'm on the topic of email, I want to apologize to the bunch of you who haven't received a response from me yet. I swear I haven't forgotten you, and I don't mean to be rude. I WILL get it together and respond asap. Thanks for your patience.


  1. What can they do about sleep while you're pregnant? My doc put me on a low-dose anti-depressant only for the reason that it helps me sleep through the night (makes me tired). But during pregnancy I know I wouldn't be able to use it so I'm curious what they'd do while pregnant.

  2. That's a really good question... I'm actually not sure, so I'll have to check on that. Heavy duty sleeping aids have always made me nervous, even when I had really bad insomnia and wasn't pregnant. Most times, I'd just deal with the exhaustion, but in retrospect, that's not good for healing at all. I'm just not into hardcore sleep or pain meds, because addiction is possible and scary to me. Because of that I think I suffer a lot more than I have to, but I just can't go there.

    My LLMDs have always pushed melatonin, to which I'd always reply, 'Whaaaat?! Have you never had insomnia?" That stuff doesn't work for beans when you have real insomnia. I'm covering my butt right now by saying I'm not recommending this and please talk to your doctor before you take anything, but I've found a happy medium that works for me. I used to pop a few Tylenol PM at night until I realized I didn't need the Tylenol part. Then I realized Benadryl is the same thing without the pain med.

    Maybe I'm a bad mom and/or a hypocrite, but I have no problem popping a few Benadryl at night to take the edge off. It's not Ambien or anything, but it does help. It's considered safe during pregnancy. My doctors would probably yell at me for taking it often, but honestly, I did it with Wyatt and he doesn't have extra limbs or anything. I try to only take them now when I REALLY need them, just in case. I am not recommending this, btw. Just sharing what I do. :)

    But I'll add this to my list of questions for the doctor.

    Last thing: Is there an antidepressant that's safe and sleepy during pregnancy? Maybe something to look into...

  3. Sorry you are having a return of symptoms. Our paths of healing from this terrible disease are ever-evolving. I have gathered from your posts that you aren't too into many of the alternative treatments, but I have to tell you how amazing rife has been for me and my husband. It is the craziest sounding treatment of all, I know. It was really last ditch for me. I could barely walk (I understand the lifting of the legs with arms), couldn't think, had crazy flecks and flashes in my vision, terrible auditory sensitivity, my legs were on fire (the list went on and on, I'm sure you know how it is). I turned to Rife because someone my husband respected recommended it to us and decided I would look for the all telling herx. Boy, did we both herx! We treat for Lyme, bartonella and babesia on separate nights and each gives very different symptoms. I was given my life back. I still have some nerve stuff, but not too bad most of the time.

    On a different note, I have only recently gone back on abx and stopped rifing to try for a second child. I got pregnant the first month but miscarried very quickly at five weeks. It is very sad, and I am hoping that I will be able to carry a pregnancy successfully soon. You are an inspiration:)


  4. BTW, the herbs skullcap and passionflower are considered safe during pregnancy and are used for insomnia and relaxation. I used to go days without sleeping until I became determined to figure out what works for me. Melatonin def. didn't! When non-pregnant, the amino acids Tryptophan and GABA are pretty amazing. They helped me when my Lunesta stopped working and I was desperate. Stacey

  5. Stacy, I'm so sorry to hear about the miscarriage. That must have been an incredible letdown after making so much progress with the Lyme treatment. I love that you are optimistic and plan to try again soon. That makes a world of difference. You really never know with that kind of stuff--we were able to have a successful pregnancy very shortly after a miscarriage, so it's possible, and of course, sometimes it takes a little longer, but don't give up hope!

    Thank you for sharing this great information on alternative treatments. Like you said, all of our healing paths are different, and I realize that just because something didn't work for me doesn't mean it hasn't made a huge difference to someone else, so I definitely appreciate the additional suggestions! Rife machines aren't for use during pregnancy, does that sound right? It would be something to do afterwards?

    I'm going to read about skullcap and passionflower. I've never heard of using either, so this could be helpful for me when I have bouts of insomnia. I imagine there are a lot of other sleep deprived readers that could benefit from this info too. Thanks!

  6. hi
    is it possible to email you privately . i have a few questions regarding docs and pregnancy recommendations. hope you are well . thanks.

  7. Of course! You can email me at Look forward to hearing from you! :)

  8. My LLMD in California gave me a similar transmittal statistic of 50/50 with no abx, 25% with one abx, and 2% with 2 abx while pregnant.