I First Had Lyme Disease in 2010. I Never Really Got Better.

The author has spent a decade fighting persistent Lyme disease symptoms — and convincing those who don’t believe him that his illness is real

Karl Bode in Lincoln Park, Seattle. Photography by Ian Bates

This story is part of “Tickpocalypse,” a multi-part special report.

My first run-in with Lyme disease had few of the usual hallmarks of the illness. I never had the trademark bull’s-eye rash. I never even saw a tick. And despite adhering to all the standard treatments, I’ve never fully recovered. Nearly 10 years later, I still suffer from an often-debilitating array of symptoms that modern medicine has no concrete answer for.

My experience with the disease began shortly after my wife and I bought a home in the Hudson Valley in upstate New York. While clearing dead trees and leaves from the property in the summer of 2010, I became viciously ill. After spending several days in bed with a fever that peaked at 103 degrees, I headed to my local doctor to be sure I hadn’t contracted a plague.

Given that we had moved just a few hours away from Old Lyme, Connecticut — where the disease first surfaced in 1975 — the doctor prescribed a two-week course of the antibiotic doxycycline, the gold standard treatment for Borrelia burgdorferi, the bacteria that causes Lyme disease. Follow-up blood tests (both the Western blot and ELISA) confirmed that his guess was correct.

I slowly began to feel better.

It didn’t last.

About a month later I began to experience bizarre new symptoms, starting with the sudden development of severe arthritis in my hips and hands. Then came recurring and debilitating headaches, chills, cold sweats, frequent bouts of disorientation, vertigo, and even depersonalization, a terrifying sensation of feeling as though you are somehow outside of your physical body.

After a few months I returned to the doctor. My blood work was normal, with the exception of the positive Lyme tests. This time, I was prescribed a 21-day course of doxycycline to see if we couldn’t “knock this out.” The same thing occurred again: For about a month I started to feel more like my old self before the symptoms roared back — with a few…