Our Experience with Lyme Disease

My blog has never been a glossy or polished place where I try to make our lives seem perfect. At the same time, I feel like sometimes I end up telling the world far too many of our family’s problems. I feel vulnerable and even stupid for certain mistakes. And I really thought about not sharing this chapter, but I figured if I could help anyone avoid what we are experiencing -- good.

So, here it goes.

We live in upstate New York and frequently travel to Pennsylvania and New Jersey. And we LOVE being outdoors. As a result, we know all about ticks and Lyme Disease. If you don’t live where this is a big deal, feel free to skip this post (and thank your lucky stars!). Anyway, we check Ada for ticks daily, head to toe. So, when Ada was diagnosed with early disseminated Lyme earlier this week, we were completely blindsided. I mean, jaw-dropping, what-the-hell-do-you-mean, I’m-the-worst-mother-ever sort of shocked.

It all started a couple weeks ago before I headed home for the Laurel Festival. Ada had a low-grade fever for a couple days. I was worried she might have a virus or even strep. We always have to be careful with strep because my dad had open heart surgery to replace his aortic valve several years ago. Getting that strain can have deadly consequences for him. I had planned to take her to the doctor to rule it out before our trip when the fever vanished overnight.

My parents picked me up and we enjoyed our stay, only to have the fever come back when we returned home. It was low. Usually around 100.1, but ranged between 99 to 101.5 or so, and when we returned home, I figured it had been six days. Ada was also being somewhat irritable for a couple days, but otherwise completely healthy. We took her to her primary care doctor to start the investigation. Nothing showed up on a multitude of tests. 

But our doctor did mention the possibility Lyme. She said if Ada’s fever didn’t go away, we should return for a blood test. The three of us noticed a bit of redness on her scalp, so we were told to watch that, too. Of course, I immediately didn’t think that could be the case. We check her skin nighty and run our fingers through her hair, and I’ve never seen a tick on her little pale body.

It’s funny when you fixate on something for long periods of time. Like, I had this substitute teacher in high school who would always introduce himself by handing out pamphlets about the dangers of Lyme Disease. He was a long-time sufferer, and it had such an impression on me. A tiny tick bite can cause debilitating symptoms, sometimes with little notice. Where I grew up, the prevalence isn’t terribly high, so we thought this guy was a bit of a nut-case. Since I’ve grown and moved east, our doctor says around 40 percent of ticks carry the disease. When we visit NJ, the rate might be even higher. And ticks carry other sorts of scary, even fatal diseases as well.

Fast forward to Monday night after bath time. Ada had been fever-free for a week and the redness on her scalp had faded almost immediately after our doctor visit. We thought we had dodged some major bullet. Obviously she had just had another one of the hundred viruses we’ve jumped the gun and taken her to the doctor for. And then Stephen said “Uhhhhh -- you need to get up here. NOW. Ada has a rash over her entire body!” Cue the freaking out. Big and little round blotches were on her arms, legs, and trunk. Her cheeks were bright red, and this all just showed up after being in lukewarm water.

We ran over to the walk-in just minutes before it closed. The nurse practitioner wasn’t worried -- the rash was already fading the longer she had been out of the bath. But she said given our history of the mystery virus, she wanted to check with the on-call doctor. When the doctor came in, she sort of nodded and didn’t say much, they went out to the hall to talk, and we were promptly given a course of antibiotics “just in case” and a lab sheet to get a blood draw to check for Lyme.

By now, I was completely dumbfounded.

How could this have happened on my watch?

Last night I got a call from Ada’s usual pediatrician with a message that the results were in + we needed to chat. It reminded me a lot of her tone when Ada’s MRI results came back and meant brain surgery. I knew immediately that Ada had Lyme. I called her back and we spent a good 20 minutes talking about the stage the disease is in (basically we caught the early disseminated form in its earliest days -- because we didn’t see a bullseye, and not all people see the initial rash), the treatment plan (low dose antibiotics for SIX weeks), and anything we should look out for.

I told her I feel like a complete failure because I never saw a tick -- and I was looking! She said we did the best we could do by being so proactive about bringing her to the doctor. Apparently out of the four years she has been in our area, this has been the absolute worst for Lyme. I also told her I’m afraid to go outside again. She said we cannot live our lives in a bubble. We caught this early enough that Ada should have no long-lasting effects. Kids apparently don’t suffer the same fate as adults, and they typically have lower rates of post-treatment complications. 

So, now we watch and wait. And we arm ourselves with information to keep this from happening again. At the same time, I will admit the stuff I have come across online makes spotting ticks seem so easy. Ada has a lot of hair, and I’m almost certain that must be where the tick was hiding (after all, we did see the slightly red area at the doctor the first time around). The doctor said it’s possible the tick hadn’t been attached particularly long and that the 72-hour rule you hear isn’t necessarily how long it takes to contract the disease.

Anyway, if you live in a Lyme area, check, check, and check some more. Many people get Lyme without ever seeing a tick, so pay attention to any weird symptoms like on and off fever/flu with no explanation. Weird rashes. In children, irritability is another sign. The list goes on all the way to swollen joints, face paralysis, and more scary stuff I’m trying not to think about.

I look back on that high school substitute and now think he wasn’t so crazy. In fact, I thank him. Now I’m going to carry on that tradition of letting people know that this disease is no joke. Not all ticks carry Lyme, but if you ever suspect anything is out of the ordinary, get in touch with your doctor ASAP.

Have a safe and happy 4th of July weekend!