Lyme

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by Mary Beth Pfeiffer


  The Dutch recipe for preserving landscape and life-quality has made the Netherlands a lovely, habitable land—I lived there in 1991 and visit often—and an incubator for Lyme and tick-borne disease. Forget the tulips and windmills of tourist pamphlets. Here is where ticks toting dangerous pathogens mingle with and infect human beings at rates that, in some towns, are as high as anywhere in the world. On the windswept island of Terschelling, located in the Wadden Sea off the north coast, five of every thousand residents are infected yearly, rivaling disease prevalence in the United States’ Northeast, where Lyme was first recognized in the 1970s.

  The ingredients for this Dutch epidemic of tick-borne disease are cloaked in a charmingly deceptive natural tableau. Suburbs abut purple fields of heather inviting walkers onto paths lined with crushed seashells. Thrushes and small mammals thrive in a regulated, postindustrial environment. Ruddy roe deer, perhaps 90,000 nationwide, prance in fields and jump hedgerows, so common they collide with motor vehicles some 10,000 times a year.

  Willem Takken, a white-haired, white-mustachioed entomologist at Wageningen University, in 2001 began studying the dunes along the Netherlands’ blustery North Sea coast. He found them “riddled with ticks,” as he put it, with one in ten harboring the Lyme disease pathogen. He realized then the need for a national project to track the movement, infection rates, and profusion of Ixodes ricinus, the species of European tick that delivers the Lyme punch. Starting in 2006, he and his university colleagues began an annual tick census at fifteen sites across the country. Their research tells a tale of infestation and disease, with growing numbers of ticks infected with Lyme disease with each passing year.

  In 1865, a novel about Hans Brinker and his quest to win a pair of silver skates—and make his injured father well—made Holland’s frozen canals legendary. But those icy highways are a distant memory. The nation’s historic eleven-city skating race—a 120-mile trek as storied as the Alaskan Iditarod—had not been held as of the winter of 2016–17 in twenty years. It simply had been too warm. In the last century, temperatures have gone up 1.7 degrees Celsius, or about 3 degrees Fahrenheit, in the Netherlands and summer-like days have increased by nearly twenty. The potential for rising temperatures—and oceans—isn’t lost on a country with a finely tuned system of dykes and pumps, where 17 percent of the land has been reclaimed from the sea.

  In a warmer Netherlands, there is virtually no time of year when it is consistently cold enough to guarantee against questing ticks, namely those in search of one of the blood meals Ixodes ticks take at each of its three life stages. Indeed, instead of taking two or sometimes three years to complete their life cycle, ticks now may live out their lives in half the time, skipping or shortening those dormant times known as diapause. Up to 10 percent of the Dutch population—or 1.7 million people—likely would test positive for antibodies that show exposure at some time to the Lyme disease pathogen.

  The irony is that this onslaught of diseased ticks is the product of two colliding forces: the manufactured, pollution-driven phenomenon we call climate change, and human efforts to revive and coexist with a natural world we have altered. When he was a boy growing up in Holland, WillemTakken rarely saw a bird of prey. Today, they soar over a landscape with wild boar and deer, reassuring signs to the Dutch that nature survives amid industrialization, after DDT, and despite the incalculable violation of World War II. “We now see a wildlife population that is actually as it was in the nineteenth century,” he said.

  But this modern version of nature is different, sanitized, unbalanced. In today’s Holland—and in many other developed lands—people live in what a Yale University researcher wryly named the “woodburbs,” happily cohabitating with and admiring the wildlife around them. But the animals of this contrived green landscape, most especially mice and deer, come with a catch. They are essential to the survival and sustenance of ticks, and there are few natural enemies, as there once might have been, to keep the animals in check. The European roe deer bordered on eradication in the early twentieth century. But protected by hunting limits and the love of an adoring public, its population surged by 50 percent in Europe in twenty years through the early 2000s, to about nine million animals.

  Ticks generally pick up the Lyme infection, in their first and second stages of life, mostly from small mammals, in particular mice (including, in Holland, the garden dormouse). These pesky rodents once might’ve been eaten by hungry foxes, animals that in this scenario at least are few and far between. When these diseased ticks molt into adults, mice and other small mammals will not do. It is on the flanks or ears or eyelids of deer that ticks find their purpose in life. They feed, they breed, they fall off, and the cycle ends with each pregnant female laying several thousand eggs to support a new Ixodes generation.

  The birds move ticks around. Warming climate helps them survive. Mice infect them. But, said Takken, “If there were no deer,” to support adult ticks, “there would be no Lyme disease.” That is debated, as is most everything in a disease in which truth and fact, as we will see, are evolving.

  “Shitty Disease”

  The road to diagnosis was long and difficult even after Barbara Pronk thought she knew what was wrong. There were many, many tests, “cheap and worthless,” her mother Josephine said, before a laboratory in Germany, using an alternative to the standard assay, confirmed Barbara’s suspicion: she had Lyme disease, and, because of the diagnostic delay, it was of the worst kind. Long-established, resistant to treatment, advanced. In such cases, the Lyme bacterium, a spirochete known as Borrelia burgdorferi, finds ways to evade the body’s immune system and survive an onslaught of medications. It damages tissues, causing lasting pain. It hides dormant, in places diagnostic blood tests don’t reach, giving its host a sense of wellness; then it strikes again. Barbara called the disease an “invisible assassin,” a description with which many late-stage Lyme patients would agree. An upstate New York doctor, speaking to about 400 people at a research forum in Albany, New York, in 2016, put it somewhat less poetically: “It’s a shitty disease,” said Dr. Ronald L. Stram. In the front row at the forum was a twelve-year-old girl in a pretty dress and a wheelchair, who had been blessed by Pope Francis on an airport viewing line some months earlier. She, like Barbara, had been told that perhaps there was nothing wrong at all even though she had gone to a doctor with the Lyme rash and wasn’t treated. Perhaps, it was suggested, she just did not want to walk.

  Barbara struggled to capture the dimensions of her illness in an email. “This is not a ‘normal illness’ but an opponent of unprecedented size: a battle against bacteria and their toxins that plague your body,” she wrote in Dutch, “into every organ, tissue, cell, and take you physically and mentally and make you completely devastated inside.”

  Long after her diagnosis, she shared her illness over coffee with a colleague. The woman put a comforting hand on Barbara’s arm. “Please, don’t,” Barbara said.” It hurt to be touched. Like others at Shell, the woman had not known Barbara was ill. When she had previously passed up a promotion to the top tier of Shell secretaries, she told the colleague only that she did not want her job to take over her life.

  But something else already had, robbing Barbara of her present and future. Her diagnosis, she wrote, came “much too late.” She had pain, “excruciating…unbearable,” that no drug could dent. She had had repeated courses of antibiotics, taken herbs and supplements, undergone acupuncture, and tried special diets. Accompanied by her mother, she had traveled to Bali for ozone therapy that, like everything else, did not help her. She cried out regularly in her sleep. She lost hope.

  In March 2014, in a flat overlooking the sprawling harbor of Scheveningen, a resort city on the North Sea not far from her home, Barbara shared champagne with her mother, two of her closest friends, and a psychologist. It had been nine years since she was infected by a diseased tick. They shed tears and held each other. Earlier, they had taken Barbara to the seaside promenade, lined with kitsch and cafes on one side, t
he city’s immensely wide, tawny sand beach on the other. The sun was shining brilliantly, atypical of the Netherlands in March, and Barbara looked out at the sea. The now thirty-nine-year-old woman was a shadow of the one in that sparkling photograph but she was more beautiful than she had ever been, her mother thought, and she was filled with joy. The decision had been made.

  Barbara had drafted an email to twenty-six members of the Dutch Parliament’s House of Commons, along with prominent Lyme disease doctors and researchers, Shell executives and coworkers, journalists, and others. It was Barbara’s attempt to make what would happen to her, and had already happened to her, matter. She would succeed, with the ironic luck of good timing and the work of many people who, like her, understood the implications of Lyme disease from personal experience.

  Four years before, in 2010, Dutch citizens had also delivered a message to Parliament, submitting a citizens’ petition that legislators were legally obliged, by virtue of 71,000 signatures, to take up. Do something to monitor, prevent, test for, and treat Lyme disease, it implored. Barbara’s email arrived at the petition’s tipping point, the make-or-break moment for a movement seeking recognition. By then, a task force had met, hearings had been held, and committee reports had been issued. Advocates feared the battle would be lost in the muddled politics and polarized debate of Lyme disease. Barbara’s electronic missive, which she posted on a Lyme website where it was received with alarm, would make Dutch history. Sent March 19, 2014, just before 11 p.m., it began, “As my last wish before I will end my life….”

  Antibiotic Line in the Sand

  Every year, some 25,000 people in the Netherlands are diagnosed with Lyme disease, a figure that quadrupled from 1994 to 2015. The majority of people are treated successfully with a course of antibiotics, typically doxycycline or, particularly for young children, amoxicillin. These success stories have been used to mold the public perception of Lyme disease as a benign illness, common to some geographical regions, the story goes, but eminently treatable. Missing from that view, which has been fostered by the medical establishment in America, is the other side of Lyme, the more insidious one. This is the one in which tick bites go unseen, tests fail, cases are misdiagnosed, and, of growing importance, illnesses are complicated by other pathogens carried by ticks. In 2001, a Columbia University team published a study of twenty children, ages eight to sixteen, whose parents had taken them to an average of four doctors, with some seeing seven physicians, before Lyme disease was confirmed. Those diagnostic delays came at a price. Eighteen months after treatment, the children suffered many more memory and attention problems than a healthy control group and had lower IQs. They had trouble retrieving words and were hypersensitive to light and sound. Ominously, eight of the children, or forty percent, had had suicidal thoughts, and two had made suicidal gestures.

  These children were tested for cognitive not physical problems of pain and fatigue that are also common to people belatedly treated. They are but a small sample of what the Columbia researchers called chronic Lyme disease but is officially termed Post-Treatment Lyme Disease Syndrome. Whatever it is called, there is no question that significant numbers of people suffer ongoing symptoms from the bites of diseased ticks that go far beyond the cognitive issues of the Columbia children. How many, of all those infected, for how long, and how to treat, are unknown.

  Consider patients in Holland, where Barbara Pronk lived. Of those 25,000 Dutch cases reported annually, 1,000 to 2,500 people were estimated in 2015 to suffer prolonged symptoms a year after treatment, including fatigue, pain, and problems with concentration. The figure is likely low because of how Lyme disease is reported in the Netherlands, with most people diagnosed by the classic Lyme rash—the easiest cases to flag and treat. Other studies suggest there are many more posttreatment sufferers. At Johns Hopkins University, sixty-three Lyme disease patients—“highly active and healthy” before infection—were treated with antibiotics and, because they were symptom-free just afterward, were thought to have been cured. But six months later, twenty-one of the patients, 36 percent, developed new symptoms of pain, fatigue, and memory problems. Lyme disease or not, many people suffer in such ways, especially as they age. But this group’s rate was far higher, a challenge to assertions that posttreatment complaints “appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne coinfection.” That wording comes from the 2006 medical guidelines that have governed Lyme disease care in the United States and, because of the influence of American research and medicine, in much of the world. There is considerable science to suggest that such guidance, proffered by the Infectious Diseases Society of America (IDSA) is little more than opinion and not based in fact.

  For at least five years, the US Centers for Disease Control and Prevention (CDC) had officially stated, based on a review of the scientific literature, that 10 to 20 percent of treated Lyme patients exhibited symptoms six months or more after they were treated. But typical of the controversy that dogs Lyme disease, as I’ll discuss in chapter 4, the agency changed that wording in 2015, saying instead that a “small” share of patients suffer ongoing problems. This is characteristic of a long-running effort to tamp down public fear of Lyme disease and disempower an unhappy patient community. The CDC, like medicine generally, does not officially recognize that Lyme disease may be “chronic,” defined as the failure of common antibiotics to kill the infecting spirochete, leaving patients sick. And yet it cannot explain, as officials in Holland put it on a government website, “why some patients develop such complaints and why these persist.”

  I have heard the stories of many people who suffer long-term effects from the bite of a diseased tick. Many see confirmation that they have a chronic form of Lyme infection because they respond, to a point, to antibiotics, and relapse without them. Others had suffered from a complex array of tick-borne infections and been rejected for care by top-notch clinics and doctors. These patients—from the United States, Canada, European countries such as Sweden, the United Kingdom, the Netherlands, Germany, and Austria, and even Australia—often were diagnosed months or years after initial infection, giving the Lyme spirochete time to disperse throughout the body and cause a laundry list of symptoms. “A fork felt like a bowling ball,” wrote New York City singer and songwriter Dana Parish, who, though treated early, was so overwhelmed by weakness she believed she would die. A Pennsylvania woman, Sherrill Franklin, who had founded and run a highly successful manufacturing company, suffered vertigo, tinnitus, and a thirty-pound weight loss. “I struggled to climb a set of stairs,” she said. An Oxford University student, bitten by a tick in her first year, could once memorize Shakespeare plays; with Lyme, “my memory had all but shut down,” Rachel Martin wrote in an essay describing her ordeal. Darren Fisher, from a remote town in Alberta, Canada, described daily headaches and debilitating back pain that $250,000 spent on treatments and care had not curtailed. His one ironic stroke of luck was when a radiologist certified brain damage enough to qualify him for long-term disability.

  The experiences of these patients are the reason that Lyme disease should be feared. It is a stealth invader that is remarkably adept at evading the body’s immune system and finding places to hide from both diagnostic tests and antibiotic treatment—concepts that are backed by science I will discuss in coming chapters. In its advanced stages, Lyme disease is an illness modern medicine is ill equipped to treat, let alone cure.

  These patients tell remarkably similar diagnostic sagas to the one lived by Barbara Pronk. Symptoms were assessed. Tests were performed. Medical wisdom was checked. And patients were sent elsewhere for answers. A young man who grew up with my children on our country lane visited perhaps ten doctors when Lyme disease made it impossible for him to work as a landscaper. “After awhile,” Richard Hargrove said of the physicians he’d seen, “I knew that look.” A woman in Holland told me of going to the Czech Republic for her baby’s Lyme disease treatment, after local physicians refused t
o care for the little boy. A woman from London saw eleven doctors in six specialties; after she tested positive, a rheumatologist confessed to knowing nothing about treating Lyme disease and sent her away. Indeed, in the face of unschooled doctors and uncertain treatment, patients go to great lengths for care. In Canada, they cross the border into New York State to see a particular doctor because Canadian physicians won’t take them. The Oxford student sought care in the Netherlands and later the United States. A doctor in Washington, DC, Joseph Jemsek, has a world map with dozens of pins dotting the many countries from which his Lyme patients come. These pins represent people who may exhaust their life savings and mortgage their homes to seek care outside the standard medical menu that has failed them. Many others have no such resources to spend.

  When turned away by doctors, patients with advanced cases are given various reasons, some valid, some in not so many words: You think you have Lyme disease but probably don’t; it says so in the guidelines and the literature. You are depressed, anxious, mentally ill, misguided. You will take too much time. I do not know how. The insurance company won’t pay for your care.

  What these doctors surely do not say is, I do not want to lose my license or face disciplinary charges, as others have, for prescribing antibiotics for longer than medical protocols suggest, which is generally ten to twenty-eight days. Imagine this. We are talking not about prescription opioids that killed 28,000 people in the United States in 2014 and for which few doctors have been held responsible. We are not talking about pharmaceuticals with alarming toxic side effects—duly noted in scores of American television advertisements—that are readily dispensed after government-sanctioned risk-benefit calculations. We are talking antibiotics, inexpensive drugs that, while no doubt overused generally and plagued by issues of superbug resistance, are among the safest there are.

 

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