Is Chronic Lyme Real?
Why the answer matters less than the questions you ask your doctor
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This story is told with permission from my patient.
She came in convinced she had Lyme disease. A woman in her mid-60s, she’d spent a few weeks hiking in Maine this spring. She never saw a tick. But in June she started feeling achy in her hips and exhausted for no clear reason. She also had a dull headache that wouldn’t quit. She did what most of us would do: she went online and read up on Lyme disease.
Then she took herself to an urgent care clinic in Maine where they ran basic labs including a Lyme test. Everything came back normal. “Good news,” she was told by a cheerful young doctor. Except it didn’t feel like good news when she felt draggy and not herself.
So she kept looking. A friend recommended a clinic that claimed to specialize in chronic Lyme. There, she got something urgent care hadn’t offered: someone who took her symptoms seriously. She also got a treatment plan—IV antibiotics and oral supplements for $5,000 without good evidence behind any of it. By the time she sat down in my office this month, she wasn’t sure who to believe: the provider who told her nothing was wrong? Or the one who told her he knew exactly what was wrong?
I could tell you the same story about a patient recovering from COVID, or mono, or influenza. (Or any patient with non-specific symptoms and normal labs.) The details change; the limbo doesn’t.
To be clear, the urgent care doctor wasn’t a bad doctor. She just didn’t have time to surface my patient’s whole story. My patient asked, “Do I have Lyme disease?” The labs said no. Visit over. Because answering the question a patient brings in is faster than discovering the question underneath it. Her real question wasn’t “Do I have Lyme?” It was “What could cause fatigue, joint pain, and headaches in a woman my age?” Those are two very different medical encounters.
And the Lyme clinic? It offered the most precious commodity for anyone feeling lost and unwell: someone who listened. That’s why these clinics thrive. Validation is the product; the treatments are the price.
Here’s what both clinics had in common: they took her question at face value. One answered “no” and stopped looking. The other answered “yes” and stopped looking. A dismissal and a diagnosis-for-sale are twin mistakes, each one ending the search.
Because here’s the ugly truth about lingering post-infectious syndromes: they are usually not one thing. In my experience, what gets labeled “chronic Lyme” or lumped under “long COVID” is often several different problems wearing the same costume—de-conditioning after weeks of illness, insomnia triggered by coughing jags or fitful sleep, depression or anxiety showing up in physical form, an underlying condition such as diabetes or COPD that the infection unmasked. Each of those has a different treatment. None of them is discoverable if curiosity ends at “Your labs are fine” or “It’s chronic Lyme.”
So what happened in my office? I took a detailed history: her migraines, her pre-diabetes, her family history of rheumatoid arthritis, her medications and supplements, her sleep, her stress. I examined her head to toe. And I re-ran her labs, this time casting a wider net, including markers of inflammation and a more detailed Lyme panel.
When she left, I told her the truth: I didn’t know yet what was going on, but I was optimistic we’d figure it out.
Her results came back a few days later. Lyme: negative, again. Everything else normal—except a sky-high sedimentation rate, a nonspecific marker of inflammation. A sedimentation rate that high isn’t a diagnosis; it’s a flare sent up by the body. Finding the source meant going back to her story. So, I called her on the phone and asked more about the headaches. They had started localizing to her right temple. That detail—along with her age, her fatigue, and that inflammatory marker—pointed to temporal arteritis (also called giant cell arteritis or “GCA”), an autoimmune inflammation of the arteries in the head that, left untreated, can threaten vision. I started her on steroids that day, arranged a biopsy to confirm the diagnosis (which it ultimately did), and looped in my rheumatology colleague.
The hip pain turned out to be a separate story: wear and tear from a car accident years ago, unmasked when fatigue knocked her off her regular stretching routine. An X-ray proved it. The pain was related to her new diagnosis, just indirectly—which meant the treatment for hip pain wasn’t treating the GCA; it addressing an old injury that was flaring alongside it.
It’s funny—even after she got fully better on steroids, she still didn’t quite believe me that a tick bite wasn’t behind the whole shebang. And I told her: maybe it was. Maybe a tick bite she never saw set the cascade in motion. Medicine is an art as much as a science. Labs are only half the story. The other half—the timeline, the fears, the life surrounding the symptoms—is data too.
If you’re living in this limbo—if your tests are normal and you still feel terrible—the question isn’t “Who will finally believe me?” It’s: “Who will keep looking alongside me?” That’s a different kind of help, and you’re allowed to ask for it by name.
Have you lived in this limbo—after Lyme, COVID, or anything else? What did it take to be taken seriously? I’m all ears.
Beyond the Prescription comes out on August 11! I wrote it with you in mind.
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My "nobody quite believes me" diagnosis is Ehlers-Danlos Syndrome. The compassionate rheumatologist who finally diagnosed me said, "This diagnosis solves nothing, but explains almost everything." It was on me to communicate my EDS to practitioners down the line. But many of them don't understand it, don't believe me, question the diagnosis, or just shrug. I think my age (75) has something to do with it just an old lady with a lot of pain & complaints. My new PCP does believe me, and has been helpful. She referred me to a PT with special training in hypermobility issues, and I'm finally addressing the bad shoulder that I identified weeks ago as my "one thing". Fingers (carefully) crossed.
Analysis and diagnostics. Looking at the whole picture.
Thank you for this.