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May is Lyme Disease Awareness Month. This is the story I don’t usually tell in full.
“It’s a spider bite.”
That’s what my pediatrician said when my mom brought me in with a bullseye rash after one of my camping trips. I was in 8th grade. I remember looking at the ring on my skin and thinking it didn’t look like any spider bite I’d ever seen. But he was the doctor, and I was a kid, so we went home.
That rash was textbook Lyme disease. Nobody tested. Nobody even considered it. It was the start of a Lyme disease misdiagnosis that would take years to unravel.
Bug Spray, Ticks, and a Rash No One Took Seriously
My ticked off journey likely began in 8th grade, on my first school camping trip in Northern Central Florida. I lost my DEET bug spray on that first trip and was too afraid to ask my parents to buy me another one. So for every monthly camping trip that followed for the rest of the school year, I went without it.
It was the 2000s. We’d learned about Lyme disease in school, but Lyme was a Connecticut thing. There was no Lyme in Florida. Or so everyone believed. Without bug spray for the rest of those trips, I figured I’d be fine.
Trip after trip, we encountered ticks of all sizes. The nymphs were so tiny they seemed almost adorable compared to the hideous grown ones. We all got good at removing them with tweezers like it was just part of the routine. Nobody panicked. Nobody thought twice.
Then came the rash. A ring-shaped mark on my skin that my mom took seriously enough to bring me to the pediatrician. He glanced at it and called it a spider bite. No testing. No follow-up. We moved on. That was my Lyme disease misdiagnosis in real time, and none of us knew it.
The Work Horse Years
The following year, as a freshman on scholarship at a private school, I started to slip. Schoolwork that had always come easily to me, especially anything requiring memorization, was suddenly taking two or three times longer. I would have to reread my textbooks over and over just to understand them somewhat. I dropped my Honors Geometry class because I couldn’t keep up with the pace of learning that had never been a problem before.
My body was doing things I couldn’t explain. I had awful day and night sweats that even prescription-level deodorant wouldn’t stop. My hands were constantly clammy. I was getting sick more often than I ever had before, picking up every cold and virus that came through.
From a young age, my grandmother had taught me that struggles could be overcome with hard work and perseverance. So that’s what I did. If I needed to be a work horse, I was willing to become a work horse. I studied harder, longer, drank copious amounts of caffeine every day just to function, and went to the nurse’s office several times a week for headaches that no one could explain.
By sophomore year, the exhaustion hit a wall. A few days around my cycle each month, I would hibernate. Not “sleep in late” hibernate. The kind where your body shuts down and you physically cannot get through the day. My mom took me to the pediatrician again. The same one who’d called my bullseye rash a spider bite. This time, the labs came back borderline anemic. I started taking iron. The iron fixed the numbers on the labs. It did nothing for the hibernation.
I can’t say I was a happy teenager or a sad teenager, but I was a ticked off teenager. I was angry with myself, frustrated that my body wasn’t cooperating with what I was asking of it. My eyesight started getting worse too — by junior year I needed glasses just to read the chalkboard. One more thing my body was doing that nobody connected to anything. Home wasn’t a soft place to land either. By the end of my junior year, I was applying to out-of-state schools with generous scholarships. I wanted out.
I finished my senior year fueled by sugar-free Red Bull, guarana, and green tea. I made the 1,200-mile move to California thinking a fresh start would fix everything.
It didn’t. But that’s a story for another post.
What I will say is this: in early 2015, while living in Seattle, I was still unwell. I’d done enough reading by then to suspect Lyme. I sat in my primary care doctor’s office and asked her directly to test me for Lyme disease. She told me the tests weren’t reliable. Instead, she said my symptoms were consistent with anxiety and prescribed me low-dose Xanax.
I asked for the test by name. I was still told no.
What I Wish Someone Had Told Me About Lyme Disease Misdiagnosis
I know a lot more now than I did then. Most of it I wish someone had just told me.
The bullseye rash isn’t a given, and even when it shows up, it gets missed. Fewer than 50% of people with Lyme disease recall seeing one. Mine was textbook, a ring-shaped mark clear enough that my mom brought me to the doctor, and it was still called a spider bite. A Lyme disease misdiagnosis that cost me years. So imagine what happens when the rash doesn’t show up at all.
Early Lyme symptoms mimic things doctors already have an easy answer for. Fatigue? You’re a teenager, you’re just tired. Headaches? Stress. Joint pain? Growing pains. Cognitive slowdown? Maybe you’re just not trying hard enough. Night sweats? Hormones. Vision changes? Time for glasses. I heard versions of all of these. Every single one is also a symptom of early Lyme disease, and in kids and teens especially, they get brushed off. That’s how a Lyme disease misdiagnosis keeps going — the symptoms show up, and everyone explains them away.
Testing is not straightforward. The standard Lyme screening, called an ELISA test, can come back negative even when you have Lyme, especially early on before your body has had time to mount a response. A Western Blot is more thorough, but even that can miss cases. If you want the most comprehensive option, look into IGeneX and their ImmunoBlot test, which tests for more Lyme-specific bands than the standard Western Blot and may catch infections that other labs miss.
When I asked my doctor to test me in 2015, she told me the tests weren’t reliable and handed me an anxiety prescription instead. If your doctor says something similar, don’t stop there. Ask about testing through a Lyme-literate lab. You’re allowed to ask.
The treatment window matters. A round of antibiotics in the first few weeks after a tick bite can be the difference between a short recovery and a long one. Years of delays like mine? That makes everything harder. If my doctor had tested me that first year when the headaches started and the cognitive fog rolled in, my story might look very different.
How to Advocate for Yourself
If you find a tick or develop unexplained symptoms after spending time outdoors, bring it up with your doctor. Say the words: “I’m concerned about Lyme disease.” Don’t wait for them to connect the dots.
Ask for a Lyme-specific test. If your doctor pushes back or dismisses the possibility, ask for a Western Blot or request that your blood be sent to IGeneX for an ImmunoBlot. And if you really want to hold your ground, try this: “Can you document in my chart that you’re declining to test for Lyme?” You’d be surprised how fast that one works.
Save the tick if you find one. It can be sent to a lab for testing.
Get a second opinion if something doesn’t sit right. You know your body. A Lyme disease misdiagnosis doesn’t have to be the end of the story if you catch it.
I didn’t know I could push back at 14. By 2015, I did push back — and I was still shut down. If that happens to you, don’t stop. Find a doctor who will listen.
Why I’m Telling This Story
May is Lyme Disease Awareness Month, and honestly, most people still don’t know what they need to know. Lyme gets treated like a regional problem. A Northeast problem. A “you’d know if you had it” problem. It’s not.
I’m telling this story because I spent years blaming myself for not being able to keep up, for needing caffeine just to get through a school day, for hibernating when everyone else seemed fine. Nobody thought to look for Lyme. If even one person reads this and thinks wait, that sounds like me or that sounds like my kid, and it saves them from a Lyme disease misdiagnosis like mine, then this post did its job.
If any of this sounds familiar, please share this post. And if you want the quick visual version, check out my Lyme Disease Awareness series on Instagram Stories this month.
Trusted Resources
- International Lyme and Associated Diseases Society (ILADS)
- Global Lyme Alliance
- IGeneX Tick-Borne Disease Testing
- Bay Area Lyme Foundation
- CDC Lyme Disease
“The bullseye rash my doctor called a spider bite.”
“You know your body. Push for answers.”
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