It occurred to me that my main focus has been on Lyme Disease as a whole (including all of those lovely co-infections). I've tried to keep posts non-specific, as not to exclude anyone. Plus, I'm only super familiar with the co-infections I have, and I try to only report on areas in which I am confident.
That said, there are a whole lot of other specific things that can go awry when you have Lyme. Today, I'm most interested in the thyroid.
As you probably know, many patients end up with hypothyroidism as a result of years of undiagnosed Lyme. I found out the hard way that pregnancy can affect the thyroid even more, regardless of whether you're on medication.
When I visited a high risk OBGYN a couple of months ago, he asked me what my new thyroid tests showed. I just shrugged and said, "What new tests?"
I've been on the same dose of thyroid medication for two years, and it hasn't failed me yet. In fact, I'm surprised at the difference it has made in my overall level of function. I'm not going to lie--I've only been tested once since then, and it was over a year ago.
He told me that he's seen startling changes in pregnant patients with thyroid issues. Some had levels that dropped to well below normal; others increased naturally from the pregnancy, and the added medication actually made their levels way too high. Another one of the crazy hormonal joys we experience.
Levels have to be checked at least a couple of times during the pregnancy, because they fluctuate so easily, and too much or too little medication can harm you and have negative effects on your baby. It's a simple blood test that can be done at the same time as when you have your routine bloodwork done at your OBGYN.
I made the mistake of shrugging the high risk doctor off, because frankly, I didn't like him due to his Lyme ignorance. Then the doctors I respect recently told me the same thing, so I got tested immediately. (Ooops.) In retrospect, I should have had my thyroid checked during the first and third trimesters, just to be safe.
According to the various thyroid sites I Googled, normal levels should fall between .3 and 3.3. A few other sites say it's .5 to 5.5. My doctor goes by the .3 scale. (Don't be afraid to ask for your specific numbers or have doctors explain your results. It's their job.)
I got my test results back yesterday, and I've gone from mid-range on the scale (with medication) to a .3, which is the lowest mark considered "normal."
That said, it really does help to get tested, ladies. You don't want to mess around with thyroid issues, and the medications are safe (and very much needed) during pregnancy.
Just don't forget to get re-tested again after the baby is born, as your levels might change again.
Here are some signs that your thyroid might be a little sluggish:
* Fatigue * Weakness * Weight gain * Coarse, dry hair * Dry, rough pale skin * Hair loss * Cold intolerance * Muscle cramps and frequent muscle aches * Constipation * Depression * Irritability * Memory loss * Decreased libido
(Yeah, I know, all of these are the same as Lyme...)
Here are some signs that your thyroid is a little too busy (or your dose is too high):
When I found out I was pregnant, I spent a lot of time wondering about how my body would hold up when it came time to deliver, but also what would happen when it came time to be a mom and actively participate in my child's life.
It seems obvious now, but I didn't think much about how my body would hold up during the pregnancy, AKA, how an already weakened body would magnify my symptoms as they popped up throughout the journey.
Be prepared, ladies-- backaches can put you out of commission if you're not taking good care of yourself and resting often.
I'm not talking about annoying aches that disappear with Tylenol. I've got some aches right now that make me want to kick, scream, and pull my hair out, and according to my doctor, these probably aren't going to go away soon. Here's the reasoning:
Like many Lymies, I've spent the majority of the last two years in bed or on a couch. Though I once had great posture, a strong set of muscles, and most importantly, a conditioned core, all of that went down the drain as I became unable to exercise. Muscles atrophy, stamina wanes to non-existent, and sadly, those stomach and back muscles you never knew you had under there weaken and basically leave your body like a limp piece of spaghetti.
Now, all of a sudden, your uterus is expanding to the size of Texas, and your center of gravity shifts. And all power to you if you've been able to maintain that recommended maximum twenty-five pound weight gain (especially when your Lyme takes a lot out of you and you get winded while walking, let alone burning calories by exercising.) For the record, I'm at 25 pounds already, and I'm only six months pregnant. I'm also pretty strict with my healthy diet, so it's not like cheeseburgers and candy are doing this to me.
Take that extra weight and the uneven distribution of your girl parts, put it on top of a limp spaghetti frame, and you have one hell of a back problem. After consulting with my doctor and trying everything I can think of, here's what has kept me sane this past week:
1.) Wear running shoes or supportive sneakers. No flip flops, no heels, and no bare feet, even around the house
2.) Lie flat on the floor with your legs up all the way against the wall (your body is at almost a 90 degree angle). This takes the pressure off of your back for a little while. You can also lie on the couch or bed with pillows under your legs in the thought of being on the floor creeps you out
3.) The heating pad has been my number one relief so far. Some people say avoid heat during pregnancy, but it doesn't make me at all nervous if I keep the heat on my back and don't let my body temp raise too much. (Usually 15-20 minutes of heat does the trick)
4.) Regular recommended pregnancy stretches throughout the day
5.) Body pillows have not worked for me, but I hear they work wonders for some. If you sleep with a pillow in between your legs, it's supposed to help with aches and pains, as well as keep you aligned
6.) Most importantly, don't stand for long periods at a time. I'm lame and will admit that a long period of time for me is more than 5 minutes, but everyone has their own own limits, so just be aware of yours. I find it's better if I sit and rest for two minutes before I even start to get achy. Helps me go a lot longer, and I'm not whining by dinner time
Again, you have to go at your own pace, but this new pain has inspired me to do what I can to strengthen my muscles a bit, so I don't get my butt kicked when I'm in labor. It will also aide in a faster recovery later on.
Also, this something to keep in mind if you're not pregnant yet but are considering having a baby. Even if you can do 5 crunches a day, or just one modified "granny" push up, something is better than nothing, and you can work up to more in time. This goes without saying, but the stronger your body is, the fewer aches and pains you'll have along the way.
Of course, in the end, there's one thing that puts it all in perspective, and that's your amazing little baby. Being uncomfortable for a while is nothing in the grand scheme of things, and I'm not trying to make anyone nervous when I bring these issues up--I just promised to share the full experience of Lyme pregnancy here. You could light me on fire if it meant I'd have a beautiful baby boy. It's all worth it in the end.
Yesterday around 4pm I started to experience a lot of achy lower back pain. In addition, I had what felt like some pretty nasty menstrual cramps. I was feeling Lyme achy to begin with, and my brain was a little fuzzy, so I figured I was overtired and needed a nap.
When I woke up two hours later, the stomach and back cramping really intensified, and I had tightening in my abdominal muscles that came in intervals. I also started having to pee every 15 to 20 minutes.
Type those symptoms into Google, and preterm labor comes up. Scary stuff. But I've never had a baby before-- I don't know what contractions feel like, and it wasn't like I was unable to move around or breathe. So I waited it out a bit.
Long story short, I was finally admitted to the hospital for observation around midnight.
The good news is that the baby is still healthy, and I'm not showing any signs of labor at the moment. Yay for false alarms!
Ladies, if these scary symptoms happen to you, it's helpful to know that symptoms of a bladder infection during pregnancy can be nearly identical to those of preterm labor. If I had known that earlier, I still would have gotten checked out, but I wouldn't have been as nervous. Once I checked out ok in the contraction department, it was just assumed that I had a UTI.
But here's the mysterious part: After all that, my initial tests came back negative for infection. None of us are really sure why I'm experiencing the pain, and we can't speculate whether it's Lyme related, but it's unlikely.
I will say that even before pregnancy, I've been known to have a lot of problems "down there" when it comes to frequency, burning, and stomach irritability/cramping/digestion. All were due to Lyme and co-infections, so I'm not sure whether it's just coincidence that this is happening during pregnancy.
Bottom line: if there's an issue, get it checked out, even if you're unsure of the severity. And no matter what the issue, stay hydrated. Apparently, it's super important no matter what the problem is. Also, if you're lying down, make sure it's on your left side.
I'll be on bed rest for a little while until we get more cultures back, but I feel much better knowing that the baby is staying put for now.
Best part about this is that we were able to sneak in another quick ultrasound. (When you have Lyme, you get ultrasounds all the time.)
We learned two things: 1. Baby Wyatt is still definitely a boy, and he's not shy about it. 2.) His ears stick out like his dad's. While that might lead to teasing from the rest of the world, I think it's pretty darn cute. Hooray for floppy eared babies!
Yesterday's consult with my LLMD was uneventful. I will start back on oral Zithromax within the next couple of weeks, but I'm supposed to let my body detox from all meds a little while longer.
Not sure how I feel about that, as my health seems to have taken a nose dive this past week, but I've been assured that the second trimester is the safest in terms of avoiding Lyme transmission.
Typically, doctors are most concerned during the first and third trimesters, so I'm just going to gut it out for a couple more weeks and take it easy. (Husband does the chores while I read a book on the patio? No complaints there!)
In the meantime, I'm focusing on dealing with stress in a healthy, more productive way. Many women deal with anxiousness during pregnancy. Who wouldn't? Baby supplies and birth plans. Expanding bodies and shrinking bank accounts. Discussing with your partner how life as you know it is about to change in a major way. Are you ready? Can you handle this commitment? (Of course you can, but that doesn't mean the insecurities aren't there from time to time.)
Lymies have the added bonus of a stressful illness that leaves our physical and mental abilities inconsistent at best. I'm not going to lie. I've gotten all sorts of neurotic and stressed during this pregnancy. I've also spent a lot of time Googling things like, "Is my anxiety harmful to my unborn baby?"
The answer is, yes. Anxiety-ridden mommies have a greater chance of having anxious children. Whether that's genetic or just a learned habit from mom, I don't know. I never know what to believe with these "studies" anyway, but this particular idea makes sense to me.
Regardless of how it affects baby, we should try to live stress-free for ourselves. You already know by now that stress makes sick people sicker. It has a negative impact on even the healthiest people.
I get tired of reading those articles--"Ten Ways to Eliminate Stress," and they repeat the same things over and over. Breathe. Meditate. Get a pedicure. Exercise (yeah I'll get right on that as soon as I can feel my legs again). Sniff some scented oil (barf).
Here's how I look at it: We're obviously all different, and as much as meditating works for me, you might think it's a crock. The smell of fresh lemons might make you want to hurl. But here's what we ALL have in common: there are at least a few things in this life that make us so happy/content that we feel physically lighter and more relaxed.
These don't have to be huge, life changing things. For me, it's all about reading books on Buddhism, preferably outside when there's a nice breeze. I like taking pictures of things in my neighborhood, especially new spring blooms. I like to hug my dog, stick my feet in the lake across the street and throw rocks in the water. On great days, I have a friend over for tea or I share a "fancy" meal at home with my husband. By fancy, I mean we drink our water out of wine glasses and we use the good napkins and plates for the hell of it.
As long as you're present in that exact moment, enjoying it for what it is, your muscles will loosen up, you will take deeper breaths, but most importantly, the world will not feel as heavy.
So think about it--what are your "this is what makes life better!" activities? Next time you're stressed about babies or health, try doing one of these things you love and just be kind to yourself and enjoy the mini mental vacation.
Though I don't have much to share in terms of future Lyme treatment (still giving my body a break from all drugs for another week until I meet with my LLMD), I will discuss an issue that's been on my mind a lot lately.
The Lyme Literate doctors all say no way; my other doctors say there's no recorded proof that spirochetes can be transmitted through breast milk, and if it does happen, the chances are so slim, it's not worth worrying about.
All I hear is, "There's a slight chance you could make your kid very sick, but no worries--everything is just fine!"
Once again, I find myself having to choose between two very opposite sides of the spectrum. There's no middle ground when it comes to basic decisions like feeding. Boob juice or no boob juice. That is it. Simple, right?
The first time mom in me steps up and says, "You'd better think about this long and hard, because YOUR actions determine the health of this baby, who can't speak or think for himself. YOU are the protector."
But "breast is best!" No s***, really?! If I read one more militant mommy rant about how it is cruel and selfish to deprive a child of breast milk, I'm going to kick something. Yes, animals in the natural world nurse their young for a reason. Yes, I am remorseful and already sad about not being able to share in that bonding experience.
Breastfeeding just does not work for some families, and whatever that reason is, the mother should not be made to feel like a failure for her decision. So why am I second guessing myself about going straight to the bottle? I'm assuming it's because I haven't had much support so far, and I want to feel like I'm doing the right thing and being a good mom.
Yesterday I saw one of my favorite doctors--she's works closely with my main OBGYN (the woman I always speak so highly of). When I brought up my apprehension about breastfeeding, she was quick to (kindly) lecture me about how I needed to breastfeed. All mothers need to do it, regardless of the situation. "Even mothers with serious diseases like HIV can breastfeed because the transmission rate is so low, so stop worrying about Lyme!"
I know she didn't mean to sound ignorant or insensitive, but really?! Serious diseases? And for what it's worth, I wouldn't risk passing on HIV either, no matter how slim the chance, but hey, that's just me.
I'm aware of the benefits of breastfeeding. Babies need mom's milk to build up their immune systems and ward off illnesses. Breastfed babies have fewer colds, ear infections, childhood illnesses, etc.
I can't help but take a look back at bad years of my life, particularly the last three.
Paralysis, neurological problems, claw hands, blue feet, Bell's Palsy, wheel chairs, weekly doctors visits, anxiety, depression, thyroid and adrenal problems, severe stomach issues, allergic reactions, food intolerance, vertigo, double vision, heart problems, the humiliation of fainting in public places, trips in ambulances, excruciating physical pain that at times left me drifting off to sleep wondering, "Will I wake up tomorrow morning, or is this it?"
I'm not saying this to be melodramatic; this is very real. So, I think I just settled my own internal debate. When baby Wyatt makes his grand appearance, he will lovingly receive his very first bottle of manufactured formula. I say let him get an ear infection. Let him get five! These are minor problems we can fix. I couldn't live with myself if he experienced any of the others listed above because I folded under the pressure of critical doctors and judgmental spectators.
I'm not sure which camp is right. Either I'm completely wrong for buying into the better- safe-than-sorry group, or perhaps in the years to come, Lyme will be taken more seriously, breast milk transmission will be proven, and I will feel sad for the women who had to tell their sick children, "I'm sorry, we didn't know much about Lyme back then, and the doctors said it was safe."
I am very curious to read other thoughts, opinions, and experiences on this subject, as I'm in unknown territory here. Any breastfeeding with Lyme info (preferably scientific) is also greatly appreciated. Anyone out there have kids during an active Lyme period? How is everyone's health now, and looking back, would you have done anything differently?
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.