Lyme disease is an emergency. Instead of feeding the hype, we must support the science.

The controversy may be low-hanging fruit, but what we really need to focus on is a motherlode of hopeful research shining new light on the disease.
Illustration of patient and doctor in shining a light in a dark cave full of ticks and bacteria.
Science is our light in the darkness.Paige Vickers / for NBC News
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By Pamela Weintraub, health and psychology editor, Aeon

The fight over Lyme disease is one of the hottest topics in medicine right now. Is Lyme underdiagnosed or overdiagnosed? Easily detected with current tests, or often missed? Cured with a 30-day supply of doxycycline or immortal, impossible to treat no matter what? These polarized debates have fueled a series of articles and trend pieces. But as a science journalist covering the epidemic for 20 years, I’ve found the hype can cause confusion. The controversy may be low-hanging fruit, but what we really need to focus on is the motherlode of hopeful research shining new light on the disease.

Is Lyme underdiagnosed or overdiagnosed? Easily detected with current tests, or often missed? Cured with a 30-day supply of doxycycline or immortal, impossible to treat no matter what?

First some undisputed facts: Lyme disease is usually caused by the spirochete Borrelia burgdorferi in the U.S. (Other borrelia species are common in Europe and have been found here, too.) It is transmitted to humans by the bite of a black-legged tick. Part of a worldwide epidemic of tickborne disease, Lyme afflicts around 300,000 up to 440,000 new patients a year in the United States alone. Most prevalent in the American northeast and midwest, it has been reported in all 50 states and, with expanding boundaries propelled by climate change, has become a source of panic on the ground.

But unresolved questions in science keep getting swept aside by Lyme politics: Critics correctly point to Lyme-wannabes (people who say they have Lyme, without exposure or any proof) and bogus treatments (where controversy is high, charlatans thrive). For instance, a Houston woman died after treating her illness with a bleach-based enema. Fever treatments from self-induced malaria to hyperthermia bring on relapses and have caused deaths. Rife therapy, magnets, even shamans — the list goes on. Authenticated Lyme patients correctly respond that so much scrutiny and suspicion has led to delayed diagnoses and late or insufficient treatment, leaving them chronically ill.

Also widely accepted are a trifecta of challenges that can make early diagnosis tough:

  1. Tests do not reliably pick up Lyme disease antibodies for at least six weeks, because that is how long it takes for the human immune response to be reliably detected.
  2. The famous bull’s eye rash, technically known as an Erythema migrans, is diagnostic for Lyme in endemic communities. But the rash actually takes many shapes, does not always appear, and often goes unseen.
  3. The CDC says if exposure is plausible and the symptoms fit, doctors should treat for possible or probable Lyme disease without a fully -positive test or the rash. They call this a clinical diagnosis. But in the face of so much controversy, doctors can hesitate, letting patients slip through the cracks of early diagnosis, when Lyme is easier to treat.

The triad of issues leading to late diagnosis constitutes an enormous problem because some 10 to 15 percent of patients remain symptomatic after the standard treatment of 10 days to a month or two of antibiotics, Johns Hopkins School of Medicine infectious diseases doctor Paul Auwaerter said in phone interview. Physician Elizabeth Maloney, president of the non-profit Partnership for Tick-Borne Diseases Education, goes further. “If treatment failure is defined as a patient not returning to their pre-Lyme health status, then a review of the U.S. trial evidence suggests that the treatment failure rate for early Lyme disease alone is 20 percent or more.” Whatever number you pick, both she and Auwaerter agree that the later the diagnosis, the likelier a patient is to stay sick.

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Is this because infection persists, as some people contend, or because of immune assault or permanent damage, as others insist? The jury is still out and, of course, patients vary. But with diagnoses climbing year after year, the number of Lyme patients staying sick, often very sick, has really added up.

A recent study from Johns Hopkins, where those failing treatment are said to have “Post-treatment Lyme disease syndrome,” found alarming brain inflammation in MRI scans of the cohort. The New England Journal of Medicine reports that the group is as impaired as those with congestive heart failure and sicker than those with type two diabetes. Imagine if 15 percent of strep patients failed treatment and stayed sick, or 15 percent of those with ear infections. Parents would be storming the barricades. No wonder Lyme activism is on the rise.

Other tickborne infections complicate the scene: Thousands of Americans each year contract the tickborne disease, babesia, a malaria-like parasite transmitted by the same ticks as Lyme disease. The most common pathogen in the U.S. blood supply, babesia kills almost 20 percent of those infected while transfused.

When babesia and Lyme occur together, disease is often much worse. The same ticks also carry anaplasma, the fatal Powassan virus and a host of other borrelia species causing relapsing fevers, Lyme and Lyme-like illness that won’t test positive on a Lyme test or cause any rash, leading still more patients to suffer a dreaded “mystery disease.”

It is biomedical research, not a fight made for social media influencers and the media, that will deliver true solutions, and science is stepping up.

It is biomedical research, not a fight made for social media influencers and the media, that will deliver true solutions, and science is stepping up.

Plans abound for the not-yet-bitten. A vaccine (of course, a controversy) is being readied for those who want their nature. Out in Nantucket, scientists are considering release of Lyme-resistant transgenic mice to replace the native mice currently spreading infection to unexposed ticks. In Beltsville, Maryland, entomologists are trying to disrupt a pheromone that helps ticks mate.

Important new research has yielded clues for the treatment-resistant group as well. In one notable study, biochemist Brandon Jutras at Virginia Tech found that Borrelia burgdorferi shed a cellular component called peptidoglycan that can cause excessive inflammation. “This discovery will help researchers improve diagnostic tests and may lead to new treatment options for patients suffering with Lyme arthritis,” Jutras has said. His new research aims to destroy the peptidoglycan or at least circumvent the inflammation. He’s also looking into how these components relate to neurological expressions of Lyme.

At Tulane, Northeastern and Johns Hopkins, scientists explore a role for infection that survives the standard treatment, but with a twist: These researchers are studying slow-metabolizing or dormant forms of the pathogens called persisters, which are seen, to one degree or another, following antibiotic treatment for almost every infectious disease.

Ying Zhang, a professor of microbiolgy at Johns Hopkins, explains that almost always, we need a well-functioning immune system to clear every last pathogen from the field. But in some diseases — recurrent urinary tract infections and, he says, Lyme disease — more routine persisters may be difficult to clear without specialized drugs. Zhang has been testing a new generation of treatments in animal models, but said in an interview that “We need rigorous clinical trials to see what works in us.”

The twists don’t end there. Lyme disease that has endured long enough to form persister cells can routinely invade the lymph nodes, reports immunologist Nicole Baumgarth at the University of California Davis, who works primarily with mice. Invasion of the lymph system “wreaks havoc in the germinal center, where the immune response is initiated,” preventing production of the cells that make antibodies, Baumgarth told me by phone. Notably, Baumgarth has found that when Lyme crashes immunity, her mice are unable to clear another infection, influenza, as well. “Maybe all we need is an immune fix,” she told me.

In the most endemic regions, physicians have taken note. Internist Steven Phillips, who treats resistant “Lyme-plus” from his office in Connecticut, reports that at least half his patients are now referred to him by other doctors — gastroenterologists, neurologists, endocrinologists, psychiatrists, cardiologists, internists — who are at a loss to explain their patients’ symptoms after thorough differential diagnoses eliminated the usual suspects of disease.

The dream of a one-size-fits-all approach to Lyme-plus has collapsed under the weight of so much complexity

“A neurologist has a patient with numbness everywhere. A psychiatrist has a 40-year old who was completely sane until two years ago. When things don’t add up, they send them to me,” he said. Phillips evaluates laboratory tests, rashes, patient history, exposure and signs and symptoms to see if he feels it is reasonable to make the clinical diagnosis of Lyme or another tickborne disease. When he is able to make the call with confidence, he says, he is usually able to treat infection and inflammation, and help his patients get well.

The dream of a one-size-fits-all approach to Lyme-plus has collapsed under the weight of so much complexity: an expanding group of infections; variations in human biology; and the specter of climate change spreading ticks far beyond disease zones on maps. Cookie-cutter treatments recommended by some doctors could never fix all this. But under the banner of personalized medicine and with a raft of funding from non-profits and the government alike, researchers are seeking answers and the biomedical tools to bring sick patients back from the brink. These scientists need our support, not our scorn.