Lyme disease: a harbinger of the world to come?

By Sonia Shah

Over the past 14 weeks, I’ve been working with a group of talented young journalism students and writers at SUNY New Paltz, as the 2014 Ottaway Visiting Professor of Journalism, on a collaborative investigation into the science and politics of Lyme disease. This tick-borne infection now afflicts 300,000 Americans every year, making it the country’s most common vector-borne disease, and costing our health-care system some $3 billion a year.

The New Paltz campus lies at the epicenter of the growing epidemic. New York state accounts for nearly a third of the nation’s Lyme disease cases, and Ulster County, where New Paltz is located, is the eighth most Lyme-infested county in the nation. Most of the students in our group who grew up in the area have been touched by the disease in one way or another.

Lyme disease should be an easy disease to control. We know how to prevent it—by avoiding the bites of ticks—and we know how to cure it too, with a prompt four-week course of cheap antibiotics.

And yet, thanks to reasons both scientific and political, the disease continues to spread, virtually unchecked.

It’s true that Borrelia burgdorferi, the spiral-shaped bacteria that causes Lyme disease, can be wiped out with a promptly administered four-week course of the antibiotic doxycycline. But prompt treatment requires prompt diagnosis. And therein lies the rub. As Jennifer McGreevey writes, one out of five people infected with the Lyme bacteria don’t develop the tell-tale “bulls-eye” rash that distinguishes the disease. Blood tests are worryingly vague, McGreevey found. The standard blood test for Lyme is not particularly specific, discerning only the presence of antibodies, which can be the result of a range of infections beside Lyme. Other diagnostic methods suffer similar shortcomings.

Thus, a great many infections are diagnosed late or missed altogether. With Borrelia burgdorferi loose in their bodies, these patients go on to suffer a wide range of long-lasting symptoms, including neurological and psychiatric ones, April Castillo found. Unexplained and poorly treated symptoms lead to depression and social isolation, breeding a bristling mistrust between patients and the medical establishment, which has led to conspiracy theories, as Smaranda Dumitru writes, and social conflicts that have derailed the development and distribution of effective vaccines against the disease, as Hannah Nesich shows in her story.

Children, who are more often exposed to the bites of ticks, are especially vulnerable. Boys between the ages of 5 and 19 suffer three times more Lyme disease than adults, Jordan Wilkinson found in her investigation. An early CDC study found that children with Lyme disease suffered symptoms for nearly a year and missed over 100 days of school. A 2011 study found that over 40 percent of children with Lyme disease suffer suicidal thoughts and 11 percent had made a “suicidal gesture.”

As Annie Courtens shows in her story, twenty percent of Lyme disease patients fail to recover after the standard treatment of a month-long course of antibiotics. The medical establishment’s response, it seems, has been to throw even more antibiotics at the infection. According to an analysis of CDC data, over half of patients diagnosed with Lyme disease are being treated with antibiotics for longer than the recommended four weeks, Courtens writes. This practice doesn’t work and is probably making things worse. Placebo-controlled trials have shown no evidence that extended antibiotic therapy, which can cause an array of adverse side effects, including the development of antibiotic-resistant pathogens, alleviates Lyme disease.

Just how the Lyme bacteria, once established in the body, responds to antibiotics is a matter of ongoing controversy and speculation.  Recent studies have discovered the Borrelia spirochete lurking in animals even after they’ve been doused with antibiotics. Borrelia burgdorferi, microbiologists say, can morph into seven different forms, and in laboratory studies has been found to band together in biofilms, networks of microbes that are impervious to a range of killing chemicals, including antibiotics, John Carey found. Chillingly, antibiotic therapy, experts say, may trigger the formation of such resistant forms of the microbe, as Carey shows in his story.

Lyme disease, which first emerged in 1975 in Old Lyme, Connecticut is not a newly evolved microbe, but it is a disease of our times, shaped by today’s disruptive land-use patterns and climate change. The patchwork forests that many New York state residents live in are the perfect habitat for Lyme disease to spread, as Laura Jensen and Zach McGrath write: devoid of the predators that limit the populations of small rodents such as white-footed mice, which harbor the bacteria and pass it on to ticks. Winter ground temperatures may depress tick populations, for now, but not for long. Climate change is expected to lead to a 8- to 12-degree Fahrenheit rise in winter temperatures in New York. Lyme is already on the move, as a result.

And yet, in the epicenter of the epidemic, the disease seems to evoke little more than a collective yawn among some business and government leaders. As one manager of a local outdoor-gear shop, which has seen zero demand for tick-repellent outdoor clothing, told Jennifer Newman, “I just don’t know if people want to be that paranoid about going outdoors.” Along a popular 24-mile hiking trail through the woods of Lyme-infested Ulster County, which draws tourists from across the region, Zameena Mejia found, there isn’t a single sign informing visitors of the risk of tick-borne disease. Ticks abound in those woods. “I went off the parking lot and went up about 30-40 feet in the brush,” a visitor to the trail told Mejia. “I was about 60 seconds in and had to pick off eight ticks…They were all over the lower part of [my] pant leg and there were two more on my lap when I sat down in the car.”

There’s so much Lyme disease around, it seems, that some locals have started to view it as a normal part of the landscape, Katie Speller found. “We all stomped through the woods half-naked and ran around without being afraid,” a four-time Lyme disease survivor recalled of a childhood spent in the Lyme-infested woods around a New York lake. Every summer, she told Speller, “the lake would go silent, there’d be no splashing or screaming or laughing to annoy the old people,” because so many children had come down with the “summer bug”: Lyme disease. And yet, despite this, she says: “It wasn’t the biggest worry.”

It’s this kind of cultural adaptation that has allowed other preventable and treatable vector-borne diseases to spread unfettered. On the other side of the planet, in sub-Saharan Africa, another wily vector-borne disease thrives: malaria. The problem with malaria isn’t the lack of preventive methods or effective treatments. Malaria has been preventable and curable for centuries. The problem is cultural. As medical anthropologists have found (and as I wrote about in my book about the disease), precious few people at risk of malaria take even rudimentary precautions, such as sleeping under mosquito nets. Why? Because the disease is considered a normal problem of life.

And so Lyme disease spreads, even as financing falls. Funds for research into the disease in New York state, Quinn O’Callaghan discovered, has dropped from $150,000 in 2008 to less than $70,000 in 2011.

Across the planet, infectious diseases are on the rise, with over 300 new or newly spreading infectious diseases emerging between 1940 and 2004. Many, like Lyme, are the result of novel contact between humans and wildlife, so-called “zoonoses,” which account for 80 percent of our new infections. Many are also, like Lyme, brought into our bodies by vectors such as ticks, flies and mosquitoes, which together infect more than one billion people around the world ever year.

The shattered lives and broken politics Lyme disease has wreaked in its leafy epicenter in upstate New York, and which you can read about here, may well be a harbinger of the global disease landscape to come.

Sonia Shah
April 30, 2014