In the space of two generations, the natural landscape in many American states has been slowly transformed from a place of refuge and peace to one of peril and menace. Blacklegged ticks that transmit Lyme disease and other illnesses inhabit half of US counties, where they infect some 300,000 people yearly in grassy meadows, urban parks, backyards and many other places.
Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of ticks or to control the harm inflicted by the Lyme bacterium. Instead, the list of new and threatening tick species and illnesses grows.
This lack of progress is not a random development. It is, rather, the product of a false image of Lyme disease, embraced by health officials and repeated in reviews of the medical literature, as an illness that is easy to diagnose and readily treatable. That picture should long ago have given way to a more nuanced view that acknowledges flaws in diagnostic tests and the limits of short-course antibiotics to cure the disease.
As a long-time investigative reporter, I began in 2012 to research Lyme disease. I had lived for 30 years in the Hudson Valley of New York, where rates are among the world’s highest, and was well aware of the rise of ticks. But I had little idea of the controversy that had stymied research and left many late-stage patients clamoring for care.
This, I found, was the real story of Lyme—minimized and simplistically framed in medical guidelines that have been raised to the level of dogma. While many patients are indeed diagnosed by a telltale rash or an antibody test, as the guidelines proffer, and many do respond to 10 to 28 days of antibiotics, thousands of others remain sick every year in a treatment paradigm riddled with loopholes.
Although 36,429 Americans officially contracted Lyme disease in 2016, the U.S. Centers for Disease Control and Prevention acknowledges that reported cases are perhaps one-tenth of the actual toll annually. Hence, some 3 million Americans have likely been infected in the last decade.
Of crucial importance, however, are studies showing that 10 to 20 percent of treated patients still suffer symptoms a year after treatment, or 30,000 to 60,000 patients annually. One long-term study found 5 percent afflicted an average of 15 years later.
Significantly, the patients in those studies were diagnosed and treated early, when outcomes are best. Among patients who are diagnosed late—as many are—perhaps half remain ill long after treatment.
The symptoms of treated patients—including pain, fatigue, memory lapses, depression, neurological abnormalities and insomnia—were described as as “severe” in a recent Johns Hopkins University study. Another study likened the quality of life of late-stage Lyme disease sufferers to those with congestive heart failure or who had had a recent heart attack.
The Lyme controversy centers on whether such patients are chronically infected, which prevailing wisdom firmly denies. But the standard test for Lyme disease—besides failing to diagnose the disease at various stages—cannot distinguish between active and past infection. Nor is there a good culture test to answer the question of ongoing infection, part of a diagnostic regime that forsakes many patients.
Beyond this, emerging research suggests current treatments may not eradicate Lyme infection. In experiments on monkeys, mice and dogs—as well as in multiple test-tube trials—a small number of Lyme bacteria have been found to survive a wide array of antibiotics. Mainstream medicine has been slow to embrace this research.
Many people in the Hudson Valley, and in other states and countries, tell of horror stories related to tick bites: men and women who never regained physical functioning after the bite was missed or rash unseen; ill children whose symptoms were attributed to psychiatric illness; landscapers and other outdoor workers disabled by implacable sickness.
Nonetheless, Lyme treatment guidelines, which have set the standard for care in the U.S., Europe and Canada, minimize the lingering symptoms of treated Lyme disease. “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living,” state the guidelines, last revised in 2006. In this milieu, researchers have told me of being rejected for grants with the comment, in one case, that Lyme was a “middle-class disease,” or, in another, that it “isn’t that much of a problem.”
The prevailing view of Lyme disease as an epidemic without urgency means that it has long been starved for funding. In 2016, U.S. health agencies spent less than $30 million to fight Lyme disease while giving $184 million to fight the mosquito-borne Zika virus. The hasty allocation was driven by valid concern for Zika’s potential to cause birth defects. But as people developed immunity to the usually harmless infection, the epidemic quickly petered out, with U.S. cases dropping from 224 in 2016 to seven in 2017.
Bites from blacklegged ticks offer no such immunity, and this plague will not soon retreat. Rather, ticks are moving to new and warmer places and delivering more illnesses, like babesiosis, anaplasmosis and sometimes-deadly Powassan virus.
If we are again to view a walk on a grassy path with joy rather than fear, we must recognize that the power of ticks has been underestimated and our response inadequate. We must commit resources equal to the threat. Because ticks are out there, on children’s playgrounds and at backyard barbecues. We are doing little to hold them in check.