I know last week my post on symptoms returning was a little disheartening. Honestly, my situation was looking pretty bleak, and I wanted to share that there are some tough, low points to Lyme pregnancy. You really don't know what you're going to get at any time.
I'm happy to report that the worst of the symptoms have subsided. I swear, it has a lot to do with the fact that I am hellbent on remaining positive throughout this. I even make a game of it now... how ridiculous can I get with my positive outlook (because if you can't laugh at yourself, you're screwed.)? So when I'm at the doctor's now and he tests my leg reflexes and tells me they're really weak, I say, "Yeah, but I have reflexes?" When he confirms, I raise my arms, victorious, and say, "SWEET!" Cause really, when you feel like things can't get any worse, they actually can, so you might as well try your best to stop the downward spiral before it gets out of control. ;)
So, one week later, I'm dealing with some pretty serious fatigue, tingly arms, and weak legs. No issues with brain fog or memory. I know my husband's AND my middle name. I can now get money from an ATM. Unfortunately, I still know the number on the scale (though it went down 8 pounds since hydrotherapy. Woohoo!).
When you have those rough weeks, just keep saying, "I may feel like crap today, but I've felt worse, so this is nothing." Or if you're a little less jaded than I am, say," Look how far I've come. I will get through this!" Because you will. That's the truth.
I've had this blog for over a year now, and I pretty much feel comfortable talking about anything Lyme related, except for one thing: digestive issues. Not that I'm uncomfortable talking about poop--we all do it--it's just that some aren't comfortable reading about it, and I don't want to freak anyone out, HOWEVER...
I had such a major breakthrough in detox today, and I have to share this (minus the gory details for you squeamish types):
Over the years, Lyme has basically frozen my peristalsis (the muscle contractions that push your food and waste through your body). I haven't been able to go to the bathroom without a stimulant laxative for nearly ten years. I used to think not going for 7 days was bad. Last month, I hit my record of not going for 34 days. Before your mind explodes at the thought of that, just know that I'm not the only bloated, grumpy constipated Lymie out there; I've talked to many, and some have gone even longer than a month (I'd jump off a bridge. Seriously.)
I've had every test known to man. Specialists would give me Miralax, supplements, enemas, crazy diets, blah blah blah, and then get stumped. Before they dismissed me, they'd say, "Go ahead and take stimulants, and good luck to you."
Do this for ten years, then get pregnant, and to your horror, those stimulants will stop working, and you're left with nothing but pain, despair, and a very concerned OBGYN.
Last week, New LLMD was the first doctor ever to take my condition seriously. He went so far as to say that my lack of detox is hurting me far more than Lyme and Co., and since I don't sweat either, I'm just sitting around poisoning myself. He believes that if I can start going numero dos daily and on my own, I might even have as much as 50% of my symptoms eradicated.
He put me on the following supplements:
1 scoop of Trufiber and 1 Enzalase (digestive enzyme) at bedtime 1 scoop Miralax in the morning 1 Therelac probiotic in the morning 1 tbs Biopure electrolytes mixed with water 1 tbs Biopure Microminerals mixed with water
My jaw dropped when they checked me out and the supplement cost alone was $180 for a month's supply, but I put my trust in the doctor, took the stuff, and I swear to God the very next day I finally had a toilet victory. I wouldn't win an award for it or anything, but at least it was something, and it's only getting better.
So if you have some issues down below, I highly recommend these products. All are safe during pregnancy.
And if you can stand to read further, here is my life-changing experience:
LLMD also recommended colon hydrotherapy. (Safe after the first trimester.)
Let me preface this by saying that as much as I try to be open-minded toward Lyme treatments, I think a bunch of the methods people talk about on Lyme forums are hocus pocus. Also, even though I'm all about natural treatment, shooting a daily coffee enema up my ass for detox is not something I care to do (though some swear by it, and I say all power to them). What I'm saying is, I'm a skeptic, and I believe in hydrotherapy as a great way to jump start fixing a detox issue.
So anyway, hydrotherapy--best thing I've ever done for myself. Ever. It sounds and looks scary when you Google it, but I swear, it's not bad at all. It was actually kind of relaxing, and afterwards you feel like you lost ten pounds.
I know some of you still reading this far will move on and won't think twice about this post, because most of you don't have this problem. That's WONDERFUL. I envy you. :)
For those of you that do suffer from constipation, coming from someone who has struggled with this for years, you HAVE to try this, whether you're pregnant or not. My results were immediate: detoxed and feeling so much better in just an hour. I'm going for another round next month. I wish someone had told me about this years ago; it would have spared me (and my loved ones who have had to deal with my complaints and laxative abuse) so much trouble. Therefore, I'm passing on this little cleansing secret to you and anyone else who will listen.
*Quick revision note: I was extra tired when I wrote this and forgot to mention the actual reason for this post in the first place! If you have a sluggish system due to Lyme before pregnancy, chances are it's going to get even worse while you are pregnant due to those lovely little hormones, as well as the baby taking up space. As you probably know, pregnancy is known to cause constipation in anyone, not just Lymies, so prepare yourselves for some possible uncomfortable times ahead.
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.
I am a mother and writer with Chronic Lyme, on the road to acceptance and recovery. I was bitten in 1996, diagnosed 2008. I am living proof that it is possible to live meaningfully and have happy, healthy children while battling this terrible disease.