I survived Lyme Disease — twice. Here’s what I want you to know
My name is Dillon and I’m a two-time Lyme disease survivor.
The other night, I was doom scrolling on social media. I came across a post advertising the fact that May is Lyme Disease Awareness Month. I did not know this, but I felt compelled to share my story because — believe me — you don’t want this disease.
Once upon a time, I went for a ride on my mountain bike in the woods. It was early on in my mountain biking days; I had just bought my first mountain bike for $100. I knew the cracked fork was the reason it was so cheap, but I didn’t care. I bought the cheapest fork I could find and had the local bike shop install it.
And then, I went for a ride.
For those of you who are cyclists, you will recognize the feeling of euphoria that is riding a bike through the woods. I loved it, and I was hooked. Our first daughter was due in October — so I attempted to get in as many rides as possible before she arrived.
On one fateful ride, I got lost. I’m not sure how this happened. But in those early MTB days, I didn’t have the apps tracking my rides or any GPS gadgets. I could have — it was 2017. All the tech existed, but I didn’t have the money or desire for any of that yet.
Anyway, I took a wrong turn. Next thing I know, I’m carrying my bike over my head as I trudged through chin-high weeds. It took me an hour to find the trail. And then another half hour to ride back to my car.
About a week later I developed a fever and headache. Joint pain. It was awful. I took a sick day. And then my wife saw a rash. It was a peculiar looking thing. Circular.
“Like a bullseye target,” she said.
The words triggered a memory, of a column that a colleague had written about having Lyme disease. He described having a rash, too — like a bullseye target.
“I think I have Lyme disease,” I told the nurse at a local urgent care unit.
I had every reason to think it was true. At this point, I had done my homework. We lived in Pennsylvania at the time, a state that has led the nation in Lyme disease cases for 12 of the past 14 years.
“OK …” she said with curious eyes.
She began taking my vitals while racing through the Lyme-related questions. After about a minute, she led me to another room. There another doctor greeted me as I repeated my hypothesis.
“Can I see it?”
She wanted to see the bullseye. I protracted my shorts to reveal a large, red circle on my right thigh.
“Yep, that’s a classic case.”
Nonchalance. She proceeded to tell me she’s seen many cases like this and that I’m actually one of the lucky ones because some people don’t get a rash, and that often leads to undetected cases.
She drew some blood and ordered me a three-week regimen of doxycycline. Over those 21 days, the rash and overall suckyness dissipated.
(Fun fact: the blood test came back negative. But the doc chalked it up to a false positive.)
But it took a while to feel normal again. It seemed like every physical activity — climbing the stairs, walking around the block, a jog, a ride — drained me more than usual.
Lyme strikes again
By June 2024, we had moved to Ohio. I was on another bike ride. This time, I was on the road bike and riding an annual route that I had just adopted. As the organizer, I felt a responsibility to check on riders.
One particular rider had dismantled from his saddle. He was walking along the side of a road, in some tall grass. I stopped, walked and chatted with him for a bit. He was fine, just a bit gassed.
A couple days later, I noticed two faint bullseye rashes — one on my right arm and another on the right side of my ribs. I didn’t think much of it right away. No other symptoms. But the next day I noticed some weird pains in my left arm. Stiffness, achy. And the rash was still there.
I wasn’t going to get checked. I hadn’t been in the woods, after all. Where could I have gotten bitten? Maybe along the side of the road a couple days prior?
I had a trip to California planned, and I didn’t want to go untreated during the trip.
So I went. I presented my theory about having Lyme disease to the nurse, similar to the time I went in Pennsylvania.
I told her I had been treated for Lyme disease in 2017 and that I was pretty sure I had it again, hoping she could prescribe medicine before my trip to California for a journalism conference. But she wanted to test for the disease first, so she drew blood and sent it to a lab.
The prevalence of Lyme disease cases in Ohio isn’t anywhere near Pennsylvania’s.
Pennsylvania, for example, recorded 11,263 lab-confirmed cases in 2024. Ohio logged 1,531, which represented a 35-fold increase over the past 13 years.
If you see more cases of something, you know what to look for.
In Pennsylvania, the nurse I saw in 2017 had seen Lyme disease much more frequently than the nurse I saw in 2024 in Ohio.
That’s why the nurse in Pennsylvania felt confident enough to prescribe medicine before lab results returned.
She also likely knew that treating Lyme disease quickly is paramount.
My suspicions of having Lyme disease in June 2024 were spot on. But it went untreated for days while traveling in California.
When the lab results came back positive, they were inconclusive on whether the infection was active. So they had to test again, which meant another couple days of waiting as the Lyme moved through different regions of my body.
One day it hurt my shoulder and knee joints. The next, my back. Then, my neck. Then, my eyes got really sensitive to light. I also couldn’t sleep very well, and felt lethargic during the day.
Then, my face started feeling tingly, until — ultimately — the entire left side of my face became paralyzed. It affected my speech and taste buds.
The nurse finally discovered I had an active infection. So she ordered doxycycline — but I was in California.
So I had to pick it up at a pharmacy in Anaheim. It’s not a fun way to spend time at a journalism conference.
Although I didn’t experience the same symptoms of fatigue, like last time, it took weeks to regain function of the left side of my face. Also, food tasted different for a while.
My kids thought I looked funny — like a pirate. When I smiled, it looked like I was saying “arrgghhh.”
Be in the know
This latest bout has made my parents fearful. My father insists that I continue to get checked for Lyme.
He’s convinced that the disease still lingers in my system, and he’s scared it could lead to impairments later in life.
If I’m being totally truthful, I’m scared too. What if the doxycycline didn’t kill it all off? Is that joint ache a symptom? Am I more forgetful because of the lingering Lyme?
I don’t know.
There is, however, a growing movement around research into Chronic Lyme Disease, which for decades has been billed in the medical community as “pseudoscience” and a “fake diagnosis.”
A 2022 breakout documentary pushes back, though. I haven’t watched it yet, but some preliminary background research reveals that around 476,000 people are diagnosed with Lyme disease every year in the U.S.
Of those, “Even with prompt treatment, 10-20% of people go on to suffer long-term, debilitating symptoms. An unknown number of people remain undiagnosed and untreated for years, decades or even a lifetime. Without an accurate diagnostic test, the true scale of this epidemic remains unknown,” reads the film’s description.
Again, I don’t know. Chronic Lyme Disease, true disease or not, needs to be understood more. Take it from someone who desperately wants to know if my bouts with Lyme will crop up later in life.
But here’s what I do know: Lyme disease isn’t fun. And more people — doctors and nurses included — need to know about what to look out for. So here are five things to know right now.
1. Lyme disease is spreading in Ohio due to expanding tick populations.
The blacklegged tick, which carries Borrelia burgdorferi, is becoming more common across the state — especially in wooded and brushy areas — leading to a steady rise in Lyme disease cases.
2. Most infections happen during late spring and summer from tiny, hard-to-see nymph ticks.
Nymphs feed during warm months and often go unnoticed. Although adult ticks can also transmit the disease, they’re easier to spot and remove.
3. Early symptoms can include fatigue, fever, muscle/joint pain, and a bull’s-eye rash.
The erythema migrans (EM) rash is a key indicator, but not all infected individuals develop it. Diagnosis requires evaluation by a healthcare provider, often with a blood test.
4. Prompt tick removal and early treatment are critical.
Lyme disease is curable, but early detection and antibiotic treatment are essential to avoid long-term health problems.
5. Prevention is key, especially for people who spend time outdoors.
Using insect repellent, checking for ticks, managing yard habitats, and wearing protective clothing can reduce the risk. Children (especially boys aged 10–14) and outdoor workers are at higher risk.
