Once Bitten: the Silent epidemic of Long Lyme Disease

What if one of the worst epidemics of chronic illness was also it’s most ignored? What if that wasn’t entirely an accident?

[Photo by Erik Karits on Unsplash]

I reviewed Megan O’Rourke’s Invisible Kingdom last year for the Wall Street Journal. I chose to begin the review with a singularly impacting scene from the book:

She lay in the dark in the small hours of the morning, awake, wrapped in a fog, encumbered by never-ending fatigue as the world slept — a gray traveler in a gray world. In this cocoon, she would stare at her computer screen, browsing for imaginary outfits to be worn on imaginary outings. It was an act of longing, of sorts: an attempt to be the person she wanted to be, someone who could enjoy life free from pain. But the greatest ordeal — greater than the unexplained electric shocks that rattled through her body or the unbearable abdominal pains that kept sending her back to the ER — was her doctors’ denial that she was sick at all.

I started there, because this is the horror of having a condition no one understands — of being told it’s all in your head. It’s gaslighting at its worst. Megan did get a diagnosis eventually: Lyme Disease. But by then, she had a chronic form — she would recover, but never completely, never as though the infection hadn’t occurred. Why did it happen? How come no one diagnosed it? To get to the root of those questions, it’s time we turned to another book: Bitten by science writer Kris Newby. She tells us a tale of Cold War drama — and suggests that maybe, just maybe, Lyme disease is no accident of nature.

The CDC suggests that 30,000 people are infected with Lyme every year. So… what is it? Lyme is caused by bacterium; two kinds: Borrelia burgdorferi and more rarely, Borrelia mayonii. It gets you by bug bite, in this case, infected black-legged ticks. (It might remind you of the old Black Death tales; fleas were the culprit, then). Once ill, you might have fever, headache, fatigue, and a characteristic skin rash like a bullseye. I said “might.” The trouble with Lyme is that not everyone gets the rash, and lots of other things cause headaches, etc. But: if left untreated, the infection spreads to joints, the…