Lyme Disease: What I Wish We’d Known

You may have noticed that we’ve been pretty quiet this summer, and unfortunately that’s because we’ve been dealing with Lyme disease!

My mom is the unlucky one of our group who picked it up during our vacation in Vermont last month, which we spent picking ticks off ourselves. (I grew up in Vermont and ticks/Lyme were a non-issue back then, but climate change (among other factors) means we will just be seeing more and more of it, sadly.)

It was a brutal month between when my mom started having symptoms (which came and went) until she finally was diagnosed and started treatment, and I’m happy to report that she seems to finally be on the mend.

My heart goes out to those of you with truly ill parents–emotionally, it was so hard to see her suffer and worry about what was wrong. Logistically, my work was put on hold because her illness fell during the two-week stretch that my kids were supposed to be staying with her. Meanwhile, her summer was dominated by not feeling well, and now being on treatment for 21 days, during which time she is particularly susceptible to sunburn so kind of has to hide out!

I do feel fortunate that we figured out what was going on with her, and I wanted to share a few things we learned about Lyme disease symptoms through this process:

1) Don’t discount a febrile illness that doesn’t resemble what you read online about Lyme.

My mom spiked a fever and suffered from extreme malaise a few weeks after she found a tick on her back, but she also experienced significant gastrointestinal symptoms when she first got sick (mostly, pronounced nausea). We assumed she had caught my nephew’s stomach bug, especially when her symptoms passed quickly and she felt fine for days afterwards. All the Lyme literature stresses an absence of gastrointestinal symptoms, and most people with Lyme feel bad with fevers and aches for weeks, so her presentation was atypical.

2) Don’t wait for a rash that looks like what you see online, or like what your doctor has seen before.

My mom’s rash was really different from anything that typically appears with Lyme, and it was originally diagnosed as some kind of post-viral \ or possible allergy because of its appearance. There was no reaction at all near her tick bite, and her rash came and went for two weeks without any bullseye ever appearing. The picture to the right is one I found online that looks similar to what my mom had, but still not exactly the same.

3) Pay attention to pain.

The symptom that finally prompted a Lyme test for my mom was pain in her back radiating to a leg. It seemed like simple sciatica, but chiropractic adjustments and massages brought no relief. That said, she is happy that she received a massage because that therapist identified the rash as similar to what another client with Lyme had experienced. I kept Googling “Lyme back pain” and coming up empty, but my physician mother-in-law found articles in medical literature that suggest various nerve pain can occur in 10%-15% of patients.

I thought I’d share these takeaways in case any of you have a weird case of Lyme like my mom did. Perhaps most cases of Lyme aren’t “textbook,” although the people who get a blazing bullseye rash and fever are the lucky ones who probably are diagnosed and treated quickly.

Please feel free to comment with your own Lyme experiences below.

Stay sane,

Maia, Founder & CEO