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 heart, and the nervous system. Yes. It will come for your brain. And as a result, brain fog (now also characteristic of long Covid) can be a recurring problem. And also like long Covid, the recurring problems are autoimmune in nature.

The American Autoimmune Related Diseases Association estimates that up to 50 million people in the United States have autoimmune disease. Called the “invisible illness,” autoimmune disease happens when the body’s own defenses go haywire. It’s not a single disorder. Instead, it happens when the immune system stops being able to tell the good guys from the bad guys. Scientists have discovered eighty to a hundred different kinds of autoimmune disorder, including some you probably recognize: lupus, multiple sclerosis, rheumatoid arthritis, type 1 diabetes, and thyroid disorders. One of the biomarkers for autoimmunity is the presence of antinuclear antibodies, antibodies that attack normal proteins. You become your own enemy, and once healthy tissue can be permanently damaged.

Kris Newby knows all of this first hand. She and her husband both contracted Lyme and went diagnosed for a very long time. The symptoms were weird. They did not make sense: “We got lost in our own neighborhood, became sensitive to sound as well as light, and experienced roaring tinnitus in our ears, muscle twitches, and tendon pain.” Unconvinced that is was a “real” disorder, Newby’s doctor described it as “a psychosomatic couples thing.” Meanwhile, the virus and the body’s response to the virus were taking a huge toll. But you see, Newby isn’t just a patient. She is also a researcher. And we researcher’s are not content to let weird things lie. She went ona journey to find out more about Lyme—and what she found, well. It’s the stuff spy movies are made of. Newby suggests that the emergence of the disease in the 1960s is related to U.S. germ warfare programs. We created a monster, and it turned on us.

The first response most of us have, no doubt, is that can’t be right. Surely that’s the stuff of conspiracy theories. It’s partly what drew me to the book; I love a weird non-fiction story (and I wrote a book about actual Cold War head transplants that inspired an X-Files movie… so yeah, the truth it out there). I ordered the book, I wrote to the author, and Newby will be the first guest at the Peculiar Book Club (Youtube livestream/podcast) on January 12th. I encourage you to join us live if you can (it’s free) or watch the video afterwards—because it’s a story you have to read to believe.

First, there’s the history. Willy Burgdorfer, the Swiss-born scientist who discovered the pathogen that causes Lyme, also worked on Rocky Mountain Spotted Fever… and ALSO for a US Military program of chemical and bioweapons research. Newby went all in, dug deep, found more. And then there’s the threats. She was told that pursuing these issues “too vigorously” could get her killed. It’s a research book, a history of medicine, but reads at times like a true-crime thriller. Is there a smoking gun at the end? Newby admits its largely circumstantial evidence; it’s in the reader’s hands to decide. But one thing is very true: people still get Lyme, it’s spreading in range, and the chronic effects are life-long. As we prepare for the epidemic of long Covid, this is a story worth returning to.

As a follow up… It just so happens that Pfizer and Valneva are in the midst of developing a vaccine for Lyme. Called VLA15, this vaccine is currently in Phase 3 human trials. It’s multivalent, designed to protect people against North American and European strains of the Lyme disease bacterium. You probably haven’t heard of the Lyme vaccine, for many of the same reasons few understand how widespread the disease really is. We are still struggling with short-sighted approaches to Lyme disease, and patients without the bullseye rash still have trouble getting physicians to take their concerns about Lyme seriously. Worse, many worry that, in the wake of Covid anti-vaxxers, even those most at risk for Lyme will refuse to take a vaccine once one is available. But truly: Read Newby’s book. Read O’Rourke’s. Chronic illness debilitates. It steals away years of life. We might not be able to do much about how Lyme started (whether natural or man-made), but with better education we can at least get better at prevention and treatment.

Want more from the Peculiar Book Club? You can see our archive of past author shows here, or find out more on the website. Join us for the podcast, too, where in addition to books, we cover film.