Good news: For some reason, I'm feeling much better. I'd like to attribute that to the garlic pills, but alas, I haven't started them yet (don't worry, I'll get around to it).
I do not recommend doing this, and keep in mind, I'm not a doctor, so I can't tell you why this is happening. I also know it contradicts the "be on antibiotics at all times!" argument, BUT I've been experimenting. It started out as an accident. I fell asleep without taking my antibiotics, which I haven't done so far during the course of the pregnancy.
The next morning, I felt crappy, but not like hell, which is where I've been stuck for the past few weeks. I had energy to hold the baby and even do a few dishes.
During my last pregnancy, my LLMD took me off of all antibiotics for six weeks during the second trimester (stating that the most important times to be medicated are during the first and third trimesters), due to a bad allergic reaction to IV antibiotics. He wanted my system to clear out for a bit before we continued on oral Zithromax.
With that in mind, I figured that if I went Zithromax free for six weeks (looking back, that was the only time I felt GREAT during pregnancy). I could afford to miss a couple of days this time to see what happened. I've been "pausing" the antibiotics for four days now, (No, I didn't tell my doctor. Yes, I'm bad. I just want to make sure my theory is fully tested first) and I'm feeling pretty great. I have energy, I feel less "toxic," I've done chores around the house, napping less, and I even drove to the bank and planted a few seeds in garden this morning.
So was all of this terrible pain my body's way of telling me that it needs an antibiotic vacation? Not sure yet, but it seems too fitting to be a coincidence. On Monday I will start back on the antibiotics again. If I quickly decline again, I'm calling my LLMD immediately to say, "Hey, what gives?"
Again, I'm no expert, and I don't want to jeopardize the health of my unborn baby. I'm assuming I will be back on the antibiotics for the rest of the pregnancy, and I prefer it that way to be safe. However, maybe there's no harm done in clearing the system for a week or maybe even two when the pain gets to be too much? *This is a guess--I'm not sure.
The quick improvement is interesting to say the least, and I'm definitely enjoying this relief. Next week I'll either report back that I'm still feeling better even when back on the antibiotics, or that I've talked to my doctor about why my pain coincides with taking Zithromax (this doesn't happen on other antibiotics). Of course, I'll share his answers.
Ultimately, this little bit of energy has given me the optimism and hope I need to push through the next 11 or so weeks until our baby boy arrives. Regardless of setbacks, I can't believe how quickly this has all gone by!
How helpful are your doctors actually going to be during a Lyme pregnancy?
Mike and I were hit hard with an "ah-ha" moment the other day. We were driving home from an appointment with the new LLMD. Thirty minutes into the drive, neither of us had said a word yet. I was feeling entirely disappointed and defeated, and when I finally broke the silence and asked Mike what his deal was, he replied, "I'm pissed, that's what's wrong! We just spent 3 hours of travel and over $300, and all we got out of it was a bottle of f*#&%ng garlic pills and a warning that you need to poop more. I could have saved us the time and money and provided both."
He was absolutely right. That was a huge part of the reason I felt to disappointed.
I found a new LLMD during pregnancy because I wanted someone who was more "hands on." In retrospect, I wanted comfort--to know someone educated and experienced was there for me during the course of pregnancy. My previous LLMD had done wonders in terms of treatment pre-pregnancy, but I always felt like he was dismissing me during pregnancy, and that he would gladly help out again once the baby hit the outside world.
Ultimately, new LLMD and old LLMD have done the same thing: Told me there is nothing they can really do to ease my symptoms during pregnancy, but have assured me that if I can just tolerate the physical discomfort and keep up with my antibiotics, things will all turn out fine. Old LLMD saves me a lot of money by saying, "Check in with me in a few months and call if there's an emergency," which is an honest, realistic approach, but it leaves me feeling alone.
New LLMD sees me monthly or more. He encourages me to sleep, eat well, and detox often, but he also says, "I'm sorry, I wish there were more I could do--we don't have any other options."
I tell him that last weekend I was in so much pain I swore I was dying, and that the nerve pain was more than I could tolerate. He pretends to have trouble filling out a form on his computer as I'm talking. He says," Hold on one second, I'm just trying to fix something here..." and then tries to change the subject after a minute or two of fiddling. When I press him on the matter, he suggests garlic as a last resort. Really? I'm a mess here, and I get garlic? (*Not saying garlic is a bad supplement, but that was like offering a Tylenol to someone with a broken bone. Plus, I was hoping for something a little more "big guns" from a doctor, since garlic and similar supplements are mostly something fellow Lymies and forums recommend when their own treatments have failed--might help over time, but I need to start feeling all of my body parts asap, you know?)
I think he's a great guy, and I think he has the best intentions--after all, wasn't I looking for a doctor who had more of a "heart" when it came to treating me and holding my hand throughout the pregnancy? I don't think he was ignoring me with the form purposely; I think he was uncomfortable hearing me say over and over that something had to be done when he was out of suggestions. Either way, I'm taking the garlic because I bought it, and I have no business complaining if I haven't tried every option available.
I realized quickly that I miss my old LLMD. He is straight to the point, but always has something intelligent and a little more "scientific" to say. He couldn't help me fix a pregnancy problem, because it usually required drugs that would potentially mess up my baby or cause an allergic reaction, but he could explain WHY I was feeling each symptom and where it came from so I'd have at least have an understanding of what was happening to me. (Ah, so I don't need a full on root canal--that face and tooth pain comes from a swollen 5th cranial nerve!?)
I've learned that, for me, I'd rather hear the sometimes harsh truth once (or twice) than pay extra to have my hand held with the same meager results. In this case, seeing the new LLMD so frequently actually caused more anxiety, because I had high expectations for this new doctor, and I was let down. We're also officially dirt poor due to all of these visits, which adds to the anxiety.
Again, this is not his fault at all. He's been kind and genuinely perplexed by the situation. This is a Sara problem, which I'm wondering if other women will run into during the course of treatment.
Pregnancy is a time of heightened emotion and we have the natural tendency to be extra protective of our bodies. Is it realistic to think that our doctors, who haven't had the "magic bullet" cure to begin with, are really going to be able to monitor us as treat us as frequently as successfully as we want during pregnancy? To me, the answer is no. I'm not saying that to be a downer, I'm just sharing what I've learned after being pregnant for the last two + years straight (good Lord!).
I think LLMDs are there to make sure there we have reassurance when we need it that we can make it through this. I think they are there to answer our questions as best they can, and provide us with the best meds given the circumstances, but Lyme pregnancy is ultimately something we are experiencing alone (though most of us are lucky to at least have support and encouragement.) The up side: chances are, you won't have huge symptom flare-ups, and pregnancy is a VERY temporary thing. The down side, it's easy to be let down physically and emotionally when you're having a rough time and you feel like there's nothing that can be done.
I just try to keep the faith and know that the discomfort passes. That, and I'm going to blast the crap out of these bugs once and for all after my little guy is born.
After a few years of treatment under my belt, I'm embarrassed to say that it's taken me this long to take seriously the issues with toxins separate of Lyme. I've gone on and off of the "Lyme Diet," caving in to sweets and gluten when I'm feeling extra terrible (half because I actually crave it, and half because I have the tendency to be a destructive emotional eater when I feel like nothing matters anymore.)
But as I shunned the toxic sugar and gluten, I paid no attention to talk about mold and chemical toxins and how they affect the body. I still can't speak eloquently on the topic... right now I'm still in the curiosity/research stage, so if you have and info to share PLEASE do so in the comment section.
What piqued my interest is that my doctor keeps bringing up the issue of detoxification--something I could take or leave as I spent the last few years just pumping myself full of antibiotics. (Yes, dumb in retrospect.) As I sat this weekend in a haze of dizziness, nausea, and pain, I was brought back to a mental place I hadn't seen in three years.
I took my mother's advice and spent an hour sitting in a chair on her deck while she pushed the baby around in the stroller. Just watching the motion made me seasick. Sounds were coming in and out. The trees were a fuzzy blur. My heart rate kept speeding up, slowing down. I felt like I had 4 different strains of the flu, if that makes any sense. It was as if my body and my mind weren't connected at all. I couldn't cross my legs. They just wouldn't cooperate. I literally had to focus: "Come on legs, cross now...come on hand, pick up the cup." I could do it, it just took time to connect. Anyway, like I said, it's been forever since I've been here, and by here I mean plagued with a scary thought: Might I be dying? Is this what it feels like? I'm so out of it and tired, I could honestly just close my eyes and float away.
Then rationalization steps in. "Sara, you are not dying. You've felt this way before. It passes. And you don't have time to die anyway... the baby needs a bath and a bottle in 20 minutes." Still, I started to cry. I hope I'm not the only nutcase that has done this--jumps to the conclusion that they are about to croak and then actually starts crying over the made up death scene they feel they're about to experience. Anyway, it did in fact pass after a long nap, but not before desperation set it.
There HAS to be something more to this whole treatment thing. I can't be feeling like total shit just because I'm pregnant.
I am stretching far for answers, because I am stumped.
Out of nowhere, the Universe finally threw me a bone (yay for OBVIOUS signs) and flooded our basement. It happens quite often, but not to this extent. We live at the bottom of a grassy hill, we have a concrete slab basement with a billion cracks, and it's been raining like a bible catastrophe for the past week. The ground water seeps in (in this case it poured in) and no matter what we do, we can't get it to dry out down there. This time it reeks badly. I can smell it right now as I type, circulating through the house. Like old, moldy towels or a dark, drippy cave. The key word is mold. It's never smelled like this before. If we didn't have a mold issue before (which I'm assuming we did, as there's always some water coming in the basement) we certainly have one now. I think it's bad when you can actually smell it, right?
Now I'm in a state of anxiety trying to figure out how to fix this expensive problem, and on top of that, I'm a mess because my overactive brain keeps reminding me that every breath I take in is giving me a nice dose of toxins. I asked my old friend Google about Lyme and mold, and I found this article (written in a Lyme for Dummies style, so forgive me if you're way above this--I'm still new.)
Makes total sense to me. Now what do I do? Anyone have experience with mold or other toxins? Did it exacerbate your symptoms? How did you treat the problem? Anything you can safely take during pregnancy?
So grateful I have a LLMD appointment tomorrow. I'll ask him about it too and report back soon.
Today I reached the point where my neuro issues were so bad, I had to call my new LLMD for advice. I'm used to hearing my old LLMD tell me to wait it out and call in a month to check in. There was never anything he could do during pregnancy to manage my symptoms due to allergies to basically all of the antibiotics safe for use during pregnancy. (Please note: this won't happen to everyone. There are plenty of antibiotics available. I just happen to be allergic to them. On top of that, I seem to be immune to Zithromax, the one I actually can take.)
After hearing this a bunch of times, it became a habit to avoid calling or reaching out on days I felt terrible.
It surprised me that when I called my new LLMD today, I actually sounded apologetic about having to bother him. He assured me that even though many doctors (LLMDs included) are hesitant to treat during pregnancy, that he wasn't, and he took my increase in symptoms very seriously.
Still, he didn't have too much to offer yet, but he did tell me this (not good news for me, but good for all of you considering making some babies):
- When I asked him if this sort of flare-up was common during Lyme Pregnancy, he said no, not at all. Usually the opposite happens, and women get a nine-month relief period from symptoms. He said he has treated a few women who have had lousy pregnancies due to Lyme, and also some who have had other medical issues that caused complications, but for the most part, the pregnancies he sees (and have heard about directly through Dr. K and Dr. B) have been uneventful. It's usually after delivery that the mother starts feeling lousy for a while.
- He still believes that detox is the best way to relieve many symptoms. We need our systems cleared out for them to run properly. In my case, he's upped the fiber supplements even more. He's also researching some herbs that are considered safe during pregnancy. Surprisingly, there aren't many that are recommended.
My doctor is taking some time to ask around and talk with other LLMDs to see if there is something that can be done for my pain and twitching, since he agrees that my treatment options are limited. I expressed that while I have no problems with going the herbal route, I'm just not comfortable pumping myself full of category C pharmaceuticals for pain. Once the baby comes, he can have me eat fertilizer for all I care--just as long as it works.
I'll hear back from him tomorrow. I'm just glad he's taken an interest in my case.
Bottom line: I'm abnormal when it comes to a significant health decline during pregnancy. It doesn't usually happen like this. I'm also abnormal in the sense that I started feeling better after I gave birth faster than most women do. If a big "relapse" occurs, it usually happens after delivery. I give all of the credit to minocycline. For some reason it helped me a great deal until I got pregnant a few months later and had to go off of it.
Do you have any remedies for treating neuro symptoms? If you do, please share!
I'm trying to remember when my health took a nose dive during my last pregnancy. By taking a nose dive, I mean having the type of Lyme flare-up we all dread. The pain, fatigue, brain fog, or whatever else you've experienced throughout the course of the disease can all pick up again and put you out of commission for a while. I believe it was around 28 weeks for me. At thirty weeks I had some last minute improvement, but by the time 36 weeks came around, I was so ill that I had to deliver early.
I get email asking about this all the time. "I want so badly to have a child, but I'm afraid that once I'm pregnant, I'll relapse and be set back for years."
Here is the truth: The fear you have about this is far worse than what will actually happen to you. I'm not saying this will be a picnic. If you're unlucky and you do have a flare in symptoms, it's probably going to suck. A lot. You will have days where you wonder if you're going to make it, or at the very least, if getting pregnant was a good idea.
I promise you, these feelings and symptoms pass. All of the women I've talked to had it in their heads that the flare-ups would be some kind of permanent setback--like life would be over. Fortunately, it doesn't work that way, however, it might take some time to bounce back. NOT the end of the world.
Another common email I receive: "Oh my God...I feel SO sick. It's been three months since I had the baby, and I'm not getting better. What should I do?"
All I can say to this is try and relax. Of course, no one wants to be in pain, but three months is hardly a blip on the map of your life. Put it this way, if you've had kids before, you will probably remember when being pregnant seemed like it was a permanent state of being. Those nine months lasted forever the first time around, and every detail of your pregnancy seemed so important. You might have even accepted the fact that you were going to be a big waddling blimp forever.
But alas, the weight comes off, and little by little your old pants pull up higher over your hips. You adjust quickly to an even more different kind of life. The nine months you spent pregnant will seem like a quick, distant memory (Wyatt is 8 months old, and I already feel like it was ages ago).
So really, it will suck for a while, but the Lyme pain experienced after birth passes. You just have to be diligent with your treatment and learn to have patience.
I am reminding myself of this daily.
Currently, I'm very sick (which explains the absence and my slacking off at returning emails). I expected a decline in health to happen, though I viewed the upcoming struggles with much less anxiety because I already know what's ahead. Unfortunately, this flare-up is happening at 21 weeks and not 28. I'm a little ahead of schedule.
I know we all experience our symptoms differently and to varying degrees, so it's hard to tell someone, "Oh, you should prepare for this during your pregnancy flare-up (if you have one)." I can only tell you what I've experienced.
If you remember, I spent my first trimester feeling better than I had in ages. It was quite a relief to have some energy, feel like a "normal" mom to my son, run errands, and even have somewhat of a social life again. Slowly but surely the extreme fatigue crept in. Usually, the red flag goes up for me once I notice that I need a bunch of naps during the day to prevent a mental meltdown, twitching, and numb limbs.
Once the fatigue happens (I'm talking fatigue that makes it nearly impossible to lift your arms up or head from the pillow), things go one of two ways: I wait it out and rest for a few days and regain energy, or I decline to the state I'm in now, which is pretty pathetic and pain-filled.
I hope this doesn't come across as whining; I'm really trying to paint an accurate picture of what my days have been like in hopes of helping others decide if they're ready to make the baby commitment. (Again, you might have a different experience. If you feel like sharing it, please do in the comment section below).
So, as I mentioned, lots of fatigue. When I wake, it takes a good thirty minutes before I start to feel my hands and feet at all. My limbs are also weak, so I stay in bed and get acclimated for a while. My husband holds and cares for the baby during this time, as I'm afraid of dropping him. Sometimes if Mike has to leave early, he puts the baby in bed with me until I can get up and start the day. Wyatt crawls at lightning speed, but so far he's far more entertained by sitting next to me, smacking my face and pulling my hair than he is bolting off the bed, so we're good for now.
The baby naps at ten. I nap at ten. He naps at two. I nap at two. If I don't, the painful electrical current running through my body gets out of control. The sensation is like I am being jolted or electrocuted from the inside 24/7. Sometimes it's just mild but annoying, as if your arm has been asleep and is tingling as the blood returns. Sometimes it's so intense, I have to meditate and try to get out of my mind, because I can't tolerate being in my own body. I have not found a medication that helps with this nerve pain, especially one that's safe during pregnancy. Last night I dreamt that I dropped a hair dryer into the bathtub and electrocuted myself--nerve pain has officially followed me into sleep territory. By the way, this neuro stuff comes from the Bartonella.
Three days ago, I lost all feeling in my legs and couldn't walk. My parents helped me out with Wyatt. Eventually, I regained mobility, but it comes and goes. My hands also turn into little claws throughout the day, and I can't feel or use them either. During these times, the little guy is great about playing in his pack and play or in his activity center. For the record, we have two pack and plays, and would have one for each room if we had the space or money. They are God's gift to Lyme moms.
I'm having convulsions at night that aren't quite seizures because I can remember them, however, they look like them and are completely out of my control.
Finally, the Tourettes-like twitches, tremors, Bell's Palsy, poor circulation, blurry/double vision (no driving--booooo), migraines, blood sugar drops, and racing pulse are all back again. There's more, but I'm starting get tired of typing all this.
There are two reasons why I haven't jumped off a bridge yet. OK, make that three: 1. I have children and a husband to love and take care of. 2. I know this flare-up is SO temporary and not like the days before diagnosis where the dark times lasted forever. 3. I felt like this last year during pregnancy and lived to tell about it, and I've been through worse before.
I also know that this could subside at any time--it's all so unpredictable--maybe my third trimester will be tolerable.
My doctors aren't as optimistic about this as I am, and they've moved my due date from August 18th to early to mid July. I love that they are looking out for the baby and me. As much as I don't like the idea of evicting my kid, part of me is so relieved that I now only have about 3 months to go.
There's that magic three months number again. A blip on the map of my life, right? It will all be worth it.
*Sorry if this post is all over the place and peppered with bad grammar. I don't have it in me to really edit this time around.
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.