12 December 2020

The Atlantic: “Lyme Disease is Baffling, even to Experts”

Lyme disease came into public view when an epidemic of what appeared to be rheumatoid arthritis began afflicting children in Lyme, Connecticut. A young rheumatologist at Yale named Allen Steere, who now conducts research at Massachusetts General Hospital, in Boston, studied the children. In 1976 he named the mysterious illness after its locale and described its main symptoms more fully: a bull’s-eye rash; fevers and aches; Bell’s palsy, or partial paralysis of the face, and other neurological issues; and rheumatological manifestations such as swelling of the knees. After much study, Steere realized that the black-legged ticks that live on mice and deer (among other mammals) might be harboring a pathogen responsible for the outbreak. In 1981, the medical entomologist Willy Burgdorfer finally identified the bacterium that causes Lyme, and it was named after him: Borrelia burgdorferi.

B. burgdorferi is a corkscrew-shaped bacterium known as a spirochete that can burrow deep into its host’s tissue, causing damage as it goes and, in laboratory conditions at least, morphing as needed from corkscrew to cystlike blob to, potentially, slimy “biofilm” forms. Because of this ability, researchers describe it as an “immune evader.” Once it hits the human bloodstream, it changes its outer surface to elude an immune response, and then quickly moves from the blood into tissue, which poses problems for early detection. (Hard to find in the bloodstream and other body fluids, the B. burgdorferi spirochete is hard to culture, which is how bacterial infections are definitively diagnosed.) If it goes untreated, B. burgdorferi can make its way into fluid in the joints, into the spinal cord, and even into the brain and the heart, where it can cause the sometimes deadly Lyme carditis.

Meghan O'Rourke

I had a friend who was diagnosed with Lyme a couple of years ago, but she made a full recovery after the antibiotics treatment. Apparently others are not so fortunate, and develop a range of symptoms after the initial phase of the disease. It goes to show how much there is still to discover about our bodies and the complex interactions between pathogens and the human immune system – something that plays an important role in the evolution of COVID-19 patients as well.

Map of the United States showing reported cases of Lyme Disease in 2018
Map of the United States showing reported cases of Lyme Disease in 2018. Cases are concentrated in the north east region of the country.

In contrast to this new coronavirus, work on a vaccine for Lyme disease has been extremely slow. A previously available vaccine in the US, LYMERix, was discontinued by the manufacturer in 2002, citing insufficient consumer demand – more likely because of public suspicion around vaccination, since the number of cases has grown constantly. In some positive 2020 news, the French company Valneva in partnership with Pfizer have completed a Phase 2 study for a new vaccine with positive initial results – but it might be available to the public only in 2025… Other researchers have had success eliminating the bacteria with the antibiotic azlocillin, in mice for now, and are evaluating how to repurpose this as an oral treatment for Lyme disease.

Meanwhile, my father, who lived in Connecticut, had begun to suffer drenching night sweats, fatigue, and aches and pains. His tests were negative for Lyme but suggestive of ehrlichiosis, another tick-borne infection, and his doctor—in the heart of Lyme country—decided to treat what seemed like a plausible culprit and its co-infection. My father was put on doxycycline for five months. He didn’t improve, which surprised me, given that I had seen immediate results. Then one day my brother found him at home, on the verge of collapse, and took him to an ER, where batteries of tests revealed that he had a different problem. He was suffering from Stage 4 Hodgkin’s lymphoma.

In 2018, my father died of complications from pneumonia, after recovering from the cancer. I couldn’t help wondering how much those lost months had perhaps cost him, as the cancer advanced and weakened him—all because Lyme had seemed like an obvious enough explanation, and the testing was sufficiently murky, that his doctor did not pursue other diagnoses. Though promising new diagnostic technologies are on the horizon, we still can’t reliably sort out who has a tick-borne disease and who doesn’t.

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