Lessons learned from Lyme disease: Once bitten, twice shy

May 23, 2019

By: Melissa Reichley, military daughter*

Spring has sprung and summer’s upon us! Yes, I’m one who beams with joy at sunny skies, warmer weather, and the promise of more time outside. Yet, as all these happy thoughts fill my mind, so do my less happy memories of having Lyme disease more than a decade ago.

Note: Add tick repellent to grocery list. And check summer clothes for long-sleeve button-up shirt.

When I started dating my now-husband, he lived in New York and I lived in Maryland, so we traveled up and down the East Coast visiting each other. In just a few months, we went to an outdoor concert in Virginia, a park in Maryland, the Philly and Boston areas to see friends and family, a picnic at the Cloisters in New York City, the Jersey shore, the Roger Williams Zoo in Providence, RI, and more.

It was such a fun summer…except for the Lyme disease (L.D.). As it turns out, each state I just mentioned is among the top 14 states where 95% of Lyme disease is typically diagnosed. Somewhere along the way in my adventures of dating, I got bitten by a tick too.

What began as flu-like symptoms continued undiagnosed for nearly 2 months. I had:

  • blurred vision (I went to the eye doctor),
  • throbbing migraine-like headaches and a stiff neck like I’d never experienced (the neurologist wanted to do a spinal tap to test for meningitis),
  • aching joints that felt worse than after I’d run my first Marine Corps marathon (yep, I went to an orthopedist and a rheumatologist too), and
  • a complete lack of energy.

In fact, I had to talk my doctor into testing my blood for L.D. after he sent me away with the usual, “Rest, drink lots of fluids, and take Tylenol for pain” message when he thought I had the flu. It wasn’t until I returned with a cell-phone pic of the telltale bull’s-eye rash (that only about 50–75% of people who get Lyme disease ever see) on the back of my leg that he even considered L.D. might be a possibility.

I was—I am—lucky that after 3 weeks of antibiotics I felt much better.

But it was a rough few months of feeling really run down, missing work, and worrying about what exactly might be wrong with me. I’d be lying if I said I felt 100% better once I’d finished the antibiotics. I didn’t feel (mostly) back to my healthier self for probably 6 months.
Those poppy-seed-sized nymph ticks—now thought to be “most likely to succeed” in delivering Lyme disease when they bite—deliver a wallop much larger than their tiny selves. But most people pay L.D. little attention until they know someone who has or had it. The statistics deserve some attention.

Like so many other unsuspecting Americans whose inner voice says, “Nah, it won’t happen to me,” I didn’t wear any tick repellent, or thin pants, or a long-sleeve shirt (“it’s too hot!”) when I headed out for whatever activities I had planned.

In the years since I had L.D., I’ve had joint, neck, and back pain; fatigue; anxiety and depression; memory issues; thyroid problems…and children. All but the kids have been anecdotally linked to Lyme disease. Yet these ailments also can be correlated with genetics, the stresses of aging and leading a busy life, pregnancy, and parenting. So I’ve also quietly wondered whether any portion of my other health concerns might have come from my bout with Lyme disease.

At the end of the day, it doesn’t really matter. The real takeaway is that even after having Lyme disease once, I could get it again. And knowing that my kids, husband, friends, colleagues, and I are just one tiny tick bite away from the pain and exhaustion of Lyme disease makes me more cautious than I used to be.

The bottom line is, like other ailments and disabilities, Lyme disease could intrude on your life as it did mine. You can pick up a Lyme disease-carrying tick more easily than you think—in your backyard, at the park, beneath the trees, or from your pet. But with a little effort, you can significantly decrease your risk of getting L.D. in the first place.

So please, make it a new habit to buy and actually wear the damned DEET spray and a hat, long shirts and pants when you’d rather wear shorts, or even permethrin-treated clothing (many outdoor stores carry it). Shower religiously when you come in from a day outside in the summer months—even when your tired inner voice tells you it can wait ‘til tomorrow morning.

Protect yourself when you head outside for your next adventure. You’re worth it.

Melissa Reichley, of the Henry M. Jackson Foundation, is a Senior Technical Writer/Editor for the Consortium for Health and Military Performance (CHAMP) at the Uniformed Services University of the Health Sciences.

* The views expressed are those of the author and do not reflect the official position of the Uniformed Services University of the Health Sciences or the United States Department of Defense.

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