Is ‘chronic Lyme disease’ real?

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POLLY MURRAY LIVED in an idyllic slice of Lyme, Conn. — stone walls curving over gentle hills and disappearing into a deep forest where her children would play for hours on end.

But her life, however picturesque, was plagued by pain.

For years, she struggled with rashes and swollen joints. And by the mid-1970s, her kids were coping with similar afflictions. A drooping eyelid. Ear pain. Aching knees that put two of her boys on crutches.

Murray saw doctor after doctor, but none could offer a satisfactory explanation. And some grew tired of her queries. She was an obsessive, they seemed to suggest. A hypochondriac. “Oh no, not again,” one said, when a family member turned up with yet more symptoms.

But it wasn’t just Murray’s family dealing with these mysterious symptoms. There were others in the area. Murray started collecting stories and calling public health officials. And eventually, she connected with a rheumatologist at Yale who began investigating.

Murray wasn’t a hypochondriac, it turned out. She’d identified something very real, Lyme disease — a malady born of a patient’s crusade and destined to inspire a fierce activism for decades to come.

Indeed, it’s the Murray model — desperate, hard-charging patient versus skeptical medical establishment — that lies at the heart of the present-day “Lyme wars.”

Only, the fight isn’t over the existence of Lyme now, but a phenomenon known as “chronic Lyme.” And it’s not clear that Murray’s pugnacious heirs will declare the same righteous victory.

In fact, they may be doing more harm than good.

LYME DISEASE, FOR most, is nothing like the dread illness that so many of us imagine.

A tick bite yields a “bulls-eye” rash, the patient sees a doctor, and a short course of antibiotics clears up the infection.

That’s it.

Left untreated, Lyme can lead to fever and joint pain. But even then, the disease is eminently treatable.

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“When a child comes in with an undiagnosed arthritis and it turns out to be Lyme disease, I tell the parents, ‘great news,’ ” says Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at Yale University. “ ‘It’s Lyme disease, that’s the best thing you can have, we’ll treat it and you’ll get better.’ ”

But if Lyme is a manageable infection for most, some fraction of patients have lingering symptoms. There’s no real argument about that; researchers sometimes refer to the phenomenon as post-treatment Lyme disease syndrome, or PTLDS.

There is an argument, though, over what’s behind those symptoms.

Many leading experts say patients may be sensitive to the aftereffects of infection — even though the infection itself has been eradicated.

But a growing number of patients — and a small group of sympathetic, and often pricey, “Lyme-literate” doctors — insist Lyme-causing bacteria can persist in the body and must be treated with an extended course of antibiotics.

Prolonged use of the medication can wreak havoc on individual patients, though, leading to diarrhea and gallbladder trouble. And it can have worrisome effects on public health, too, by contributing to the rise of antibiotic-resistant bacteria — a phenomenon the Centers for Disease Control calls “one of the biggest public health challenges of our time.”

Part of the problem is the limitations of the Lyme disease test.

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It works by detecting the antibodies the body produces in response to Lyme bacteria. But because those antibodies aren’t detectable for weeks after infection, patients who visit the doctor just after their bulls-eye rashes appear can wind up with false negatives.

The test can also yield a substantial number of false positives. That’s, in part, because many people in Lyme-heavy areas have been exposed, at some point, to the bacteria — producing the antibodies that register on the test, even though Lyme may have had no real effect on their health.

For patients struggling with “medically unexplained symptoms” — and there are a lot of people with chronic pain or exhaustion that aren’t clearly linked to a disease — any sort of diagnosis can be comforting.

Shapiro, the Yale epidemiologist, says we have a long history of protean illnesses that can absorb the anxieties of patients. Years ago, he’d get several calls a week from people worried they had “chronic mononucleosis.” Mold and fungi have inspired fear for decades.

These days, it’s Lyme that gets much of the attention — its catch-all, explanatory power supercharged by the Internet. “If your nose falls off,” Shapiro says, “you can find out that Lyme disease makes your nose fall off.”

The web has also helped to build and sustain a community of the sick and besieged. If Murray’s quest for a diagnosis was a lonely one, “chronic Lyme” sufferers can turn to an army of #lymewarriors — offering up sympathy, selfies, and solidarity in the fight against a disbelieving medical establishment.

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Shapiro says he understands patients’ frustration. Many who believe they have “chronic Lyme” are dealing with very real pain. And a good doctor, he says, will be empathetic and try to help.

But for patients who have latched onto Lyme as an explanation for what ails them, anything short of confirmation can feel like condescension — or worse.

EARLIER THIS SUMMER, Virginia Tech biochemist Brandon Jutras and his collaborators published an intriguing study four years in the making — one that could offer an answer to the enduring mystery over Lyme’s lingering effects.

The team found that, when the Lyme-causing bacteria Borrelia burgdorferi multiplies, it sheds a cellular component called peptidoglycan that has an inflammatory effect — serving as a major contributor to Lyme arthritis.

Further research, Jutras says, could show that this cell-wall component is behind other late-stage Lyme symptoms as well.

Stanley Plotkin, a prominent Lyme researcher who was not involved in the study, says Jutras’s work still needs to be confirmed. But it looks like a genuine “game-changer,” he says. And it should be cause for humility, he suggests, on both sides of the Lyme wars.

Doctors who dismissed patients complaining of long-term pain “are probably wrong,” Plotkin says. But the patients and “Lyme-literate” doctors who have insisted that the bacteria itself persists — hiding out in the body, responsible for every headache, and demanding months of antibiotic treatment — are probably wrong, too.

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What he is describing, here, are the outlines of a truce: a way for the medical establishment to finally acknowledge the advocates who have played such a pivotal role in the curious career of Lyme disease, and a chance for the advocates to step away from some of their most destructive practices.

But it doesn’t appear that peace is imminent.

There are still legitimate researchers — nevermind #lymewarriors — searching for signs of lingering bacteria. And Shapiro, the Yale epidemiologist, says that even if the Jutras study is borne out, it has limitations.

The research may explain why some who contracted Lyme have prolonged arthritis. But so many who claim to be “chronic Lyme” patients have weak claims to ever being infected with Lyme in the first place.

As long as their symptoms persist — as long as there is chronic pain and a fierce determination to get to the bottom of it — the “Lyme wars,” or something like them, seem likely to rage on.