In The Atlantic, an important article by Meghan O'Rourke, a Lyme patient: Why Is Lyme Disease So Hard to Understand? Excerpt:
Even as changes in the climate and in land use are causing a dramatic rise in Lyme and other tick-borne diseases, the American medical establishment remains entrenched in a struggle over who can be said to have Lyme disease and whether it can become chronic—and if so, why. The standoff has impeded research that could help break the logjam and clarify how a wily bacterium, and the co-infections that can come with it, can affect human bodies.
After 40 years in the public-health spotlight, Lyme disease still can’t be prevented by a vaccine; eludes reliable testing; and continues to pit patients against doctors, and researchers against one another. When I got my inconclusive diagnosis, I knew better than to dream of a quick cure. But I didn’t know how extreme the roller coaster of uncertainty would be.
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.
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