The widespread contention that deer drive Lyme disease is, for Ostfeld, a worrisome myth. Killing or culling them could backfire and make things worse because deer also have one very big plus in their column. They generally do not infect ticks with Lyme disease. The nymph that feeds on a deer has a one in ten chance of becoming infected; the nymph that feeds on a mouse is infected nine times out of ten. Hence deer might actually dilute Borrelia’s prevalence in the environment by feeding nymph ticks, which then molt into uninfected adults. What if deer were replaced, in the hierarchy of tick hosts, Ostfeld wonders, with another mammal that was better at transmitting the pathogen? Chipmunks, shrews, squirrels, even raccoons, all are better at imparting Lyme spirochetes to ticks than deer. Moreover, and this is key, it takes very few deer to support a great multitude of ticks, as the Great Island experiment found, each female laying a couple of thousand eggs at a clip. Eradicating or reducing millions of ungulates on a grand scale is impractical if not socially and politically impossible. And it also may not be wise.
It’s the Weather
In my research for this book, I was fascinated by reports of Lyme-toting ticks in strange places. They moved up mountains in the Czech Republic and in Bosnia and Herzegovina. They were found above the 70th parallel north in Finland, nestled in the feathers of razorbills and puffins. One dropped off a dog in the Northwest Territory of Canada and prompted an alarming report on the TV news. These tick reports, from what one researcher called the “climatic edges of tick distributions,” aren’t terribly significant. After all, few people live on the tops of mountains or in Finnish Arctic. These reports are, however, indicative of a migration. Ticks are moving to places where people do live as well as to the fringes of human habitation. This movement can neither be stopped nor denied, and it aligns quite exquisitely with, well, the weather.
Consider a few places that bear witness to rises in temperature, ticks, and disease:
• Norway: A research team compared data on tick prevalence from the late 1930s and early 1940s to the early 2000s. Writing in 2001, the team said Ixodes ricinus was no longer limited to coastal areas as it long had been. Instead, it “is now found in inland and mountainous areas of South and Central Norway, and has expanded its northern distribution limit” by about 250 miles. The new tick homes include municipalities where many people live.
• Sweden: Researchers from Stockholm University and the University of California, Berkeley, charted the migration of ticks from the early 1980s to mid-1990s against changes in temperature. As the number of winter days below minus 12 degrees Celsius (10.4 degrees Fahrenheit) declined, ticks emerged in a consistent south-to-north pattern. The 1990s warming “is probably one of the primary reasons for the observed increase of density and geographic range of I. ricinus ticks,” they reported in Environmental Health Perspectives.
• Russia: Using a prized set of tick observations over a thirty-five-year period, Russian researchers reconstructed the recent natural history of Ixodes ticks in the forests and floodplains of Tula, 120 miles south of Moscow. For the first fourteen years starting in 1977, the scientists saw few ticks at all. In the twenty-one years through 2011, however, they saw the population grow exponentially, what they called a “manifold increase” that they tied to “climate and anthropogenic changes.”
• The Arctic: Venturing to a remote corner of the Siberian Artic called Verkhoyansk, a group of French and Russian researchers found the first evidence of Lyme disease, reported in 2016. With 10 percent of seventy-seven residents testing positive for Lyme pathogen antibodies—meaning they had been exposed to the spirochete but weren’t necessarily sick—the researchers called the disease “a major health threat for people dwelling, sporting, or working” in this cold clime.
• China: Lyme disease, first reported with a smattering of cases in 1985, had been confirmed by 2013 in twenty-nine provinces and municipalities, according to researchers in Guangdong province. The numbers: three million bites and 30,000 Lyme disease cases in four provinces alone. “Continuous reports of emerging tick-borne disease cases…demonstrate the rise of these diseases throughout China,” their study said. Temperatures across China, meantime, are projected to rise 1.3 to 2.1 degrees Celsius by 2020, and 2.3 to 3.3 degrees Celsius by 2050, a trend that fosters vector-borne disease in China and elsewhere.
On the long list of Lyme disease theories that are open to debate, the role played by climate change ranks relatively low. As the world burns, Ixodes ticks are enjoying a population explosion and territorial expansion as never before; on that there is broad agreement. In 2006, a World Health Organization report made the link between a warming world and more of the castor bean ticks that carry Lyme disease in Europe. “Increases in density and…distribution of I. ricinus into higher altitudes and latitudes,” two Scandinavian researchers wrote for the WHO, “are correlated to changes in local climate.” Among the implications that can be argued is whether some places may ultimately get too hot or too dry to support ticks and the pathogens they bear. This is potentially a golden upside of climate change, of which there are few. For now, the story is more ticks in more places.
Whether we are poor in a Baltic state or middle class in Holland, a peasant in north China or a farmer in the American heartland, many of us are coming into closer contact with ticks. For this, we can blame patterns of development, reforestation, resurgence of deer, a plague of mice, the popularity of urban parks and suburban trails, and, as Randolph argues, economic forces that send peasants into forests for food. But these societal, recreational, and socioeconomic factors are just part of the explanation of tick-borne disease. They do not fully explain why ticks, those tiny titans from the dinosaur age, are moving to our doorsteps in the first place.
CHAPTER 4:
A Disease, Minimized
* * *
William James was a physician and psychologist who died in 1910 when he was 68, leaving a legacy of thought on the intersection of human consciousness and mental health known as functional psychology. Ranked fourteenth on a list of influential twentieth-century psychologists (after Skinner, Piaget, and Freud), he once said, “The greatest discovery of my generation is that a human being can alter his life by altering his attitudes.” Aligned with that philosophy, James and others of his time suffered from what was then called “neurasthenia,” a vaguely defined syndrome of fatigue, headaches, muscle pain, insomnia, and other symptoms. Its cause was thought to be the frenetic nature of late-nineteenth century America, with its growing cities and changing means of production, communication, and transportation. James popularized another name for this amorphous disease, rooted as it was in human response to circumstance rather than in documented pathology. He called it Americanitis.
In 2015, a group of infectious disease physician-researchers, as influential on Lyme disease as James was in the field of psychology, published the findings of a study of patients who had been bitten by ticks, infected with Lyme disease, and treated promptly with antibiotics. They were then tracked for eleven to twenty years. An average of fifteen years later, the study found the group doing quite well overall—just 4.7 percent had lingering pain and fatigue, symptoms of what has been called Post-Treatment Lyme Disease Syndrome, or PTLDS.
To that point, there had been many studies of how patients fared after they were given standard short courses of antibiotics for Lyme disease. Most research had found that significant shares of treated patients, 10 to 20 percent generally but as high as 60 percent for some patient groups, suffered fatigue, pain, memory problems, depression, and other issues even after supposedly curative treatment. But this single study—limited to a privileged set of early treated patients—would be used to redefine the dimensions of post-Lyme syndrome.
After tracking patients for an average of fifteen years, the eleven study authors essentially found little to worry about. Posttreatment Lyme, sometimes called chronic Lyme, was a problem for “only 6” of 128 patients or fewer than one in twenty, said the study. In an editorial that
accompanied the study, which appeared in the journal Clinical Infectious Diseases, Paul Auwaerter, an infectious disease physician, said the new study “should help allay the common distress that Lyme disease is routinely life-altering for the long term.” Today’s chronic Lyme disease sufferers, he went on, citing James, were yesterday’s neurasthenics, for which Lyme disease was “a universal explanation for fatiguing conditions.” The editorial took pains to let Lyme patients down easy, noting James’ contention that these psychosomatic sufferers were of “intelligent nature” with “intense yearning to try to label and understand” why they became suddenly ill, bedridden, “abandoned by family and friends.” But, based on this study, Auwaerter attributed their maladies not to chronic, unresolved infection. Instead, he said, they suffered Americanitis.
In one study and one editorial, the most significant controversy over Lyme disease was being put to rest. For two decades, the Infectious Diseases Society of America, or IDSA, has worked earnestly toward that end, having concluded early in its emergence that Lyme disease was eminently curable. But to the society’s dismay, its worldview of Lyme has been tempered by a giant, well-informed, and pesky coterie of patients—tens of thousands of them in many countries—who fervently disagree. The IDSA side sees single courses of antibiotics as highly effective at curing the disease: the medications kill the Lyme disease spirochete in vivo, namely in people. Period. The other side—from ill patients who were told they were imagining things, to a few hundred marginalized but well-intentioned doctors, to researchers at selected prestigious universities—has challenged those assertions and amassed a convincing body of science to justify another look.
Following the publication of the Americanitis study, the debate over chronic or posttreatment Lyme disease took a curious, but perhaps predictable, turn. For at least five years, the US Centers for Disease Control and Prevention had asserted on its website that 10 to 20 percent of people who were treated for Lyme disease “will have lingering symptoms of fatigue, pain, or joint and muscle aches,” sometimes “for more than 6 months.” That amounted to 38,000 to 76,000 posttreatment sufferers of the 380,000 Americans estimated to be infected in 2015 alone. Those are huge numbers of potentially impaired people.
For years, the CDC’s 10 to 20 percent figure, which was based on patients who had been treated early in the disease, was seen by Lyme patients as an acknowledgment that their suffering was real. Such numbers, however, did not comport with the view of Lyme disease fostered by the Infectious Diseases Society’s treatment guidelines for Lyme disease. First issued in 2000 and updated in 2006, the guidelines maintained the tick-borne malady responded well to antibiotics—which it does early on—with few long-lasting problems, which is open to question. Those lingering problems, the guidelines state, could usually be attributed not to sickness but to “the aches and pains of daily living.” Americanitis.
Six months after the posttreatment study was published, the CDC opted to change its stance on the after-effects of Lyme disease. As of June 2015, its website declared that “a small percentage” of patients, rather than 10 to 20 percent, might suffer continuing symptoms after treatment. The agency made no announcement of the adjustment, nor was it subjected to peer review, which is required for significant changes under a federal law designed to ensure “the quality, objectivity, utility, and integrity of information…disseminated by Federal agencies.”
Forty years into the epidemic, in fact, the CDC had not conducted a single such review of its policies on Lyme disease, the nation’s leading vector-borne disease and certainly the most controversial. Instead, it quietly made this change “based on new information,” a CDC spokesperson wrote to me, naming the posttreatment study, “indicating a frequency of <5%.” Curiously, the agency did not cite the new study on its web page, leaving in the reference from which the previous figure came.
Define “Small”
I relate this rather obtuse example of a bureaucracy at work because it is key to understanding Lyme disease policy in America. This change, in a critical government posting, grows out of a tight alliance between the CDC and the crafters of the IDSA’s Lyme-treatment guidelines. Three of eleven authors on the posttreatment study wrote the Lyme guidelines, and three more are based with them at New York Medical College, the home of officially accepted Lyme dogma in America. That view, embraced by a government agency with worldwide influence, is open to question.
Here, as a case in point, are the caveats that were ignored in the CDC’s decision to redefine the population of posttreatment sufferers as “small.”
• The study’s outcomes were measured an average of fifteen years after treatment—even though posttreatment Lyme syndrome is defined on the CDC website as symptoms that “can last for more than 6 months.” In addition to the six patients considered in the study to have the syndrome, eight others—11 percent in all, rather than 5 percent—had symptoms three to six years after treatment. What about them? Even if 5 percent was accurate, that would amount to perhaps 17,000 patients annually who would still have symptoms after fifteen years. Is that small?
• More than half of the study’s Lyme disease patients, 155, dropped out along the way, and these patients were sicker—with on average four major symptoms compared to three among those who remained. Were they unhappy with the traditional treatments they were offered? Did they go elsewhere? How “this potential selection bias might have affected results is unclear,” Auwaerter’s editorial acknowledged.
• But most significant, and at the heart of the Lyme debate, was that everyone in the study had been lucky enough to have been treated soon after infection—within a week of symptom onset, a golden time in the life of a Lyme infection when anything is possible.
Indeed, early treatment is key to assuring that B. burgdorferi spirochetes are stopped in their tracks, before they move to the brain, the eyes, the nervous system, the joints, to places that complicate treatment and confound tests. The CDC left out all of those relevant details in its blanket statement on the after-effects of treated Lyme disease, part of a misleading picture of Lyme disease as it is officially drawn.
In June of 2017, the CDC released a report on complications of long-term intravenous therapy for Lyme disease. Five patients in a three-year period, the report said, had suffered serious infections from the intravenous lines, including one who died. These incidents were undoubtedly concerning. But the report was as significant for what was left out. Aside from failing to balance the risk of treatment against its benefit, the agency’s report did not say how it had compiled its cases. For this, CDC officials solicited stories on bad outcomes involving Lyme patients from Infectious Diseases Society doctors with whom the agency has long been aligned. The stories were meant to cite the failures of physicians who believe that Lyme disease can be chronic and who do not follow CDC-supported IDSA dictates. The medical association that represents those physicians, the International Lyme and Associated Diseases Society, was not contacted for the study, nor were key members I queried. These cases were little more than cherry-picked anecdotes, provided by the side with which the CDC agreed. At the time, a CDC spokesperson told me that no systematic look at the risks of intravenous antibiotic treatment for Lyme disease had ever been done. This surely wasn’t it.
In five years of writing about Lyme disease, I have found a medical landscape that is breathtakingly controversial and, in many ways, dysfunctional, one characterized less by warring sides than by parallel universes. The side taken by the CDC strenuously and dogmatically proffers a view of the disease that is straightforward and unambiguous, solidified in 2001 by two major treatment trials and precious few since. The other sees a disease complicated by poor tests, a bafflingly complex and crafty bacterium, and the influence of related tick-borne infections, like babesiosis and bartonellosis, and a variety of related B. burgdorferi species and strains that may be missed by classic tests. Often denied government grants, this side has conducted research experiments with the help of nonprofit entities,
challenging the status quo.
Unlike almost any other disease in America, Lyme disease care is a closely controlled construct of one American medical group—the IDSA—and one government agency, the CDC. Doctors who have opted to treat outside the mainstream have faced the terrifying prospect and reality of censure or suspension by licensing boards, here and in other countries. In England, France, and the Netherlands, where I visited; in Australia, Austria, Canada, Germany, Ireland, Sweden, and in other countries from which I interviewed patients and doctors, US guidelines on Lyme disease treatment dictate care. In Sweden in early 2017, a physician named Kenneth Sandström lost his license for using too many antibiotics to treat people with tick-borne infections, even though many attested to getting better under his care and 6,700 signed a petition in support.
Sandström and other doctors do this for Lyme patients, I found in dozens of interviews, because the drugs made patients better, though not always well. Lacking an alternative, antibiotics, augmented with herbal antimicrobials and treatments for coinfections, allow some people with advanced Lyme disease to work, raise children, and exist in a relatively pain-free state. Monica White, forty-seven, of Poncha Springs, Colorado, had been incapacitated by Lyme disease and three other tick-borne infections for several years when she began intravenous antibiotic treatment around 2013. “If this is taken off the table for me,” said the mother and disabled forest biologist in 2017, “I don’t have any other resort to keep me functioning.” At a support group meeting in a local pub in Winchester, England, a woman in her fifties told me, as others have, “All I know is if I take enough antibiotics, I can have a reasonable quality of life. As soon as I stop, the symptoms come back in a matter of weeks.” Like the vast majority of advanced Lyme patients, she takes the antibiotics orally and pays out of pocket. In treatment trials involving three-month courses of antibiotics, 9 to 46 percent of patients reported improvement from placebo drugs, which may in part explain why patients on longer-terms say they feel better. Those trials, however, generally showed greater, sometimes far greater, improvement in patients on antibiotics. These benefits were deemed statistically insignificant, temporary, or overshadowed by side effects. Reassessments of the trials, as I’ll discuss later, have suggested their designs were poor and benefits underestimated.
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