In the late 2010s, a pest-control company asked, in a tick-control advertisement, “Can you get Lyme disease from acorns?” In 2006, researchers at the Cary Institute reported this revelation: A forest flush with acorns one year led to many well-fed mice the next, and to many hungry ticks the following year. This, moreover, was no random act of nature but an upshot, more likely, of climate change. Warmer seasons and more carbon dioxide are kind to the production of tree seeds. This leads to more banner years for acorns, and with them, more mice and more disease-infected ticks. Deer? A simple answer to a complex question.
“Death Pursues the Aboriginal”
In the mid-2000s, a team of British and American experts in ecology, economics, conservation medicine, political science, and veterinary epidemiology was assembled to record, by time and place, the number of diseases that were emerging in rapid-fire fashion around the world. It was led by Kate E. Jones, an evolutionary biologist at University College London whose professional biography notes she is “allegedly*” eighth cousin to Charles Darwin, six times removed. The asterisked qualifier gives the source, as any self-respecting scientist might, as the UK website for ancestry.com. Jones had researched the fate of the world’s 1,000 species of bats—no small feat—identifying the forces, such as loss of tropical forest, that were driving some to extinction. Now she wanted to take a similarly sweeping look at the scope of global disease outbreaks.
A half-century earlier, humankind had more or less declared a truce with infectious diseases, a hard-fought struggle aided by vaccines, antibiotics, pesticides, and public health monitoring. All of that changed by the late twentieth century, in what two scientists, British and Australian, have defined as the earth’s “fourth major transition” in infectious disease. The first transition, wrote Robin A. Weiss and Anthony J. McMichael in the journal Nature Medicine, began some 10,000 years ago with the development of agriculture, domestication of animals, and growth of communal societies; that’s when measles and smallpox emerged. The second transition, beginning in the centuries before and after Christ, was spurred as Eurasian societies came together for trade and war; rats with fleas and humans with lice carried typhus along. The third transition, around 1500, brought measles and smallpox to the New World. “Wherever the European has trod, death seems to pursue the aboriginal,” Darwin wrote in “The Voyage of the Beagle” in 1839.
In the closing decades of the second millennia, a new age of disease was dawning, in line with other major and related changes in climate and lifestyle. Weiss and McMichael ticked off some of the reasons: urbanization, poverty, social upheaval, air travel, land clearance, and climate change. “There seems little doubt that more incidents are occurring, and have the potential to spread more widely than 50 years ago,” they wrote. The scientists identified some of these new-era diseases: Legionnaires’, HIV/AIDS, hepatitis C, bovine spongiform encephalopathy, severe acute respiratory syndrome (SARS), and avian influenza. They counted, by 2004, thirty emerging diseases.
As research by Jones’ team would show just four years later, that figure was but a small sample, the leading edge of a bigger wave of illness. The tally was startling. From 1940 to 2004, the world experienced 335 emerging infectious disease “events,” outbreaks that grew decade by decade in a bar chart that looked like a steep set of stairs. There were about twenty outbreaks in the 1940s, just over forty in the 1960s, and ninety-plus in the 1980s, a spike attributed to HIV-related diseases. By the 1990s, the tally approached 80. These disease events around the globe included outbreaks of new bugs that only recently had infected people like SARS; new strains of old pathogens that had become drug resistant, such as of malaria and tuberculosis; and, last, pathogens that had existed historically but soared in the latter twentieth century. In that final category, the researchers cited but one example: Lyme disease.
The study was the first scientific analysis to show that diseases were rising rapidly around the world. Beyond the sheer number, the array of epidemics hinted at the ecological and environmental forces behind them. Sixty-percent of the diseases were zoonotic, meaning they pass between animals and humans; the researchers called this “a very significant threat to global health.” About 23 percent of the diseases were vector-borne, namely illnesses transmitted by ticks, mosquitoes, and so on; that figure rose to 30 percent of emerging diseases in the final decade of the study, a rather unsettling trend. Echoing what other researchers have suggested about the rise of ticks, the Jones study pointed to climate change, which it identified as a potential factor in the proliferation of vectors, like ticks, that are “sensitive to changes in environmental conditions.”
Damaged Assembly Line
In the early 1990s, Anthony J. McMichael, the Australian disease researcher, wrote a book on the threat to human health of overdevelopment, deforestation, biodiversity loss, and what he called “greenhouse warming.” A major university publisher rejected “Planetary Overload,” he told an interviewer in 2012, as “rather speculative and a bit fantasy-like…written from the vantage point of a privileged society member.” By then, McMichael had been named to the National Academy of Sciences, and his views had been validated. “Climate change is not just about disruptions to the local economy or loss of jobs or loss of iconic species,” he said two years before his death in 2014. “It’s actually about weakening the foundations, the life support systems that we depend on as a human species.”
As the Forest Service report put it, “It’s possible that the conversion of forest land to development reduces both the product coming off the assembly line, and the assembly line itself.” Cut-up chunks of forest, with their plethora of deer, mice and other mammals, and their paucity of natural predators, are part of that weaker foundation, that damaged assembly line.
And so, ticks march on. In 2014 and 2015, government scientists looked at nine national parks in the Northeast and Mid-Atlantic region, sampling for blacklegged ticks along well-used trails. In all nine parks, they found ticks infected with the Lyme pathogen. In addition, B. miyamotoi and another tick-borne bug that causes anaplasmosis were found in ticks in 60 and 70 percent of the parks, respectively. The national sites included Rock Creek Park in Washington, DC, the first time tick populations had been observed in the urban park. Here, five miles north of the White House, was where researchers found the highest density of infected nymphs, the ticks that most often infect people.
The findings published in 2017 were another indicator that ticks and the pathogens they carried had moved in all directions—north, west, and south—from the coastal Northeast where the disease first emerged. Several months earlier, Lyme-infected ticks were reported on the Outer Banks, a stunning crescent of tourist-trodden islands that hugs some 200 miles of northeastern North Carolina coastline. Beyond ticks, the bug was found in white-footed mice, rice rats, and marsh rabbits, a nicely constructed framework for pathogen production. While reported Lyme disease cases in the United States have largely been limited to states in the Northeast and Midwest, the Outer Banks researchers pointed to other evidence besides theirs of Lyme disease in the coastal south: infected ticks and rodents near Charleston, South Carolina; infected birds from islands off the coast of Georgia; infected ticks on barrier islands off the coast of South Carolina. “Lyme disease spirochaete transmission is occurring in a nearly continuous chain along the coasts of these three Mid-Atlantic States,” wrote the researchers, led by Jay Levine of North Carolina University in Raleigh. Residents of those states, and in the South generally, are told that Lyme disease is rare, that it was likely contracted elsewhere, that the regional ecology isn’t friendly to the support system needed to maintain Borrelia burgdorferi in the wild. Jay Levine’s research suggested otherwise.
Ixodes ticks do not like hot sun so it’s logical to assume they would more likely spread north, as the climate warms, than south. Testing that theory, innovative researchers from the United States Geological Survey and two universities mated Wisconsin males with South Carolina females, a tick marriage of Yan
kees and southern belles. Then they subjected the unwitting offspring to simulated conditions in the US South and North. Four-month-old larvae died faster under southern conditions. They concluded that a warming climate may limit Ixodes’ damage in the South, keeping the ticks safely tucked in the leaf litter where they don’t bite people.
That is not, however, what the southern state of Virginia is seeing. Holly Gaff is a biologist at Old Dominion University in Norfolk, which is on the Chesapeake Bay in Virginia’s southern reaches, just thirty miles from the North Carolina border. When Gaff snags a handful of blacklegged ticks on one of her white denim flags, this southern version of Ixodes scapularis usually curls up and falls off, sensitive as it is to heat. But farther north in Virginia, these ticks do something unheard of a decade ago. They crawl toward the human in reach. As heartier stock from the north moves into Virginia, she believes, “we are seeing displacement coming all the way down the state. Northern ticks outcompete these southern lazy guys.” This may explain why Lyme cases rose from about 200 statewide in 2005 to nearly 1,300 in 2014. Indeed, cases have moved, presumably as infected ticks have, in a north-to-south migration, down the Shenandoah Valley and along the Blue Ridge Mountains. Gaff sees them slowly creeping around the Chesapeake to Norfolk, where she waits to snag them, corduroy flag in hand. The US Geological Survey paper that postulated ticks may stay north included a huge qualifier: it found more ticks surviving under southern conditions when humidity was high. In summer, Gaff said, humidity is always high.
Even if blacklegged Ixodes ticks limit their influence to cooler climes—a big unknown—the South is not, so to speak, out of the woods. There is a far more prevalent, and heartier, southern arachnid known as the lone star tick, long implicated as a vector for Rocky Mountain spotted fever and ehrlichiosis. As you will soon learn, this heat-loving, ubiquitous tick has been implicated in a similar disease in the South—Southern tick-associated rash illness—that in some, perhaps many, cases may in fact be Lyme disease.
Do They Serve a Purpose?
Research shows that eight-legged creatures—that cannot move more than a couple of feet, cannot see but sense, can go for months without eating, are hard to find and harder to kill, and carry diseases—may be coming to a neighborhood near you. Is there anything good about this, or more specifically, about ticks at all? Do they serve any essential biological purpose? I asked scientists who have studied ticks for many years.
Felicia Keesing, the Bard professor, recalled her studies in Kenya and her sightings of oxpeckers, small, dark birds with beige breasts, and depending on the type, red and yellow or all-red beaks, and rings around their eyes. The oxpecker would perch atop a large animal—rhinos, giraffes, bison, zebras—and scarf up the many engorged tick offerings of sub-Saharan Africa. The oxpecker burrowed into the ears, between the eyes, along the spine of the chosen animal. It was an exercise the beast tolerated in one of those cooperative ventures in nature, a kind of mutualism that safari-goers love. But do the oxpeckers need the ticks to live?
“What most people don’t realize, though, is that the oxpeckers are really blood-eating creatures,” Keesing said. “If the blood is inside of a tick, fine. But if there aren’t blood-filled ticks around, the birds will gouge holes in the side of the wildlife and drink the blood directly.” So maybe they do need ticks, and maybe they don’t. As a 1999 article on oxpeckers in the journal Behavioral Ecology put it, “Their diet includes Ixodid ticks, dead skin, mucus, saliva, blood, sweat, and tears.” They have eclectic taste, these birds, to be sure.
Closer to Keesing’s New York home, no northeastern mammal or bird seems to depend on ticks as a dietary staple. Opossums will eat them strictly as part of a grooming regimen that helps control tick populations. Wild turkeys will eat them but not seek them out. Some new work has hinted that salamanders and wolf spiders might consume a lot of ticks. Who knows? “It might be that these species are real allies in reducing tick numbers,” Keesing speculated. We can only hope—not that eating ticks is itself without risk. In Ireland, the population of red grouse, a squat brown bird with short tail feathers, has been decimated in recent years, possibly, researchers theorize, because they eat ticks infected with a virus that causes Louping Ill, a disease found in farm animals. In the process of grooming themselves, the grouse may be acquiring a disease with a mortality rate of 80 percent.
Maria Kazimirova, a Slovakian scientist who has studied the secrets of tick saliva, agrees ticks do not serve much of a role in the web of life. But perhaps we shouldn’t be too quick to write ticks off, she suggests, at least in the pursuit of medical breakthroughs. Recall the ways that tick saliva numbs, suppresses its host’s immune system, and has anticoagulant properties. These eight-legged menaces may have a future in pharmacological research.
Said Taal Levi, the UC Santa Cruz researcher, “I do not know of any purpose for Ixodes scapularis ticks.” Indeed, ticks may not have a purpose from the human perspective, but they have, to be sure, a role. If not for the tick, Borrelia burgdorferi would be nothing. It would not get from here to there, would not be passed from mouse to deer and back, would lack the vector of vector-borne disease. We may not appreciate this as a magical thread in the web of life, but there it is. I won’t be the one to write off one of God’s less likeable creatures. Although I am surely tempted.
“Strictly from the point of view of humans,” Kazimirova told me, “ticks cause more harm than benefit.”
CHAPTER 6: Faulty Tests
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In 2001, The New York Times Magazine ran an article that set the tone for how Lyme disease patients, specifically those who disagreed with treatment policy and protocols, would be viewed for years to come. Entitled “Stalking Dr. Steere,” the five-thousand-word feature began, “Last year, Dr. Allen Steere, one of the world’s most renowned medical researchers and rheumatologists, began to fear patients.” Back in 1977, Steere was the curious doctor, then thirty-three, whose investigations of a cluster of illness in Lyme, Connecticut, led to the discovery of Lyme disease. Now, the people he had tried to help were turning on him. He was a proponent of short-course antibiotics, and they blamed him when they remained sick and were not believed. It was a good story line, and the Times ran with it.
If it wasn’t perfectly clear from the get-go, Steere was the hero of this story, a man with “a gentle, almost artistic temperament,” and a “quiet and reserved nature.” He was a “virtuoso violinist,” “a kind of Magellan of medicine.” The villains, mean and menacing, were Lyme disease patients. They stalked him in “hordes,” carrying signs when he spoke in public that said terrible things, the story said, like “How many more will you kill?” and “Steer Clear of Steere!” For all his efforts on behalf of patients, Steere was now fearful of them, beaten-down, displaying a “slightly ghostly” pallor. His stalkers thought they had a chronic form of Lyme infection, the article noted, but Steere, “the world’s foremost expert,” demurred, saying they suffered chronic fatigue, mental illness, or fibromyalgia.
The nascent movement that questioned Lyme disease treatment, of which the attack on Steere was part, was fueled by a novel, evolving, and effective way to organize dissent: the Internet. Steere was a primary focus of complaints that sometimes turned ugly. This much was true. But for every patient who may have sent a threatening email—the article doesn’t state how many Steere received—there were many more who were doing the real work of organizing a crusade. “The group did hold up signs and chanted things like ‘Steer Clear of Steere,’” said a woman with a cane who handed out leaflets on Fifth Avenue in New York. “This was a group of ill people, along with their friends and family, that were out there to educate others about the controversies surrounding Lyme Disease,” she wrote in a blog. Published letters to the editor—the Times said it received a “flood” of mail—ran four to two against the article with one writer asking, “Would you describe people who are afflicted with H.I.V., epilepsy, diabetes, heart disease or cancer as ‘stalkers’ if they protested the
loss of their medication?” Among the pro-Steere writers was his good friend since age eighteen, the violinist Itzhak Perlman, whose daughter had been misdiagnosed with Lyme disease; Perlman called Steere an “outstanding physician.” Nonetheless, in a portrayal with real and lasting ramifications, the misguided acts of some—no doubt unsettling to Dr. Steere—were cast as a guerrilla war of the many.
The venue in which the story was told—in America’s paper of record—validated the image as an accurate representation of chronic Lyme sufferers and of their unsubstantiated claims. Physicians, already told that antibiotics were curative despite indications otherwise, were given license to dismiss and ignore long-term sufferers. Other news outlets could feel comfortable following suit. Seven years later, American Medical News ran an article on the controversy over Lyme disease that continues to this day. “I have observed among infectious diseases fellows that they don’t want to see these patients,” Dr. Paul Auwaerter, a Lyme traditionalist, was quoted as saying. “It has become a poisonous atmosphere.” The fault is not solely among practitioners who rebuff Lyme cases. Patients insist they remain sick. Physicians do not know how to treat them. And the experts and public health officials who advise them have given neither permission nor tools to try. Chief among those tools is a clear-cut way to diagnose Lyme disease.
Eluding Capture
In May of 2016, the Canadian government sponsored a conference on Lyme disease in Ottawa that brought together a rare coterie of Lyme disease players: patients, activists, general practitioners, field researchers, data collectors, and most significantly, a smattering of prominent physicians and scientists on both sides of the parallel universes of Lyme disease. A rare sight at any conference that featured grumbling patients was Dr. Raymond Dattwyler, a New York Medical College professor of microbiology with a double pedigree in Lymeland. He was second author of the 2006 Lyme treatment guidelines of the Infectious Diseases Society of America, the ones that have dictated care in the United States and worldwide and been used to discipline doctors who practice outside them. As significant, he was a member of a US Centers for Disease Control and Prevention panel that met in Dearborn, Michigan, in 1994 and, as he put it at the start of his lecture, “wrote the two-tier guidelines.”
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