For better or worse, the growing number of Powassan cases, and a spate of them in the spring and summer of 2017, has helped to focus public attention on the risk of tick-borne illness. Here was an infection in which deaths and disability could be measured and seen, the line from bite to illness quick and distinct. Eighty miles from me, in the county in which my daughter and her three small children live, an unprecedented three Powassan cases, including one death, were reported that summer.
While Powassan’s toll may be startlingly dramatic, the measure of damage by Lyme disease is to Lorraine Johnson crystal clear. It is documented in a set of photographs—her before and after brain scans—that are testament to six lost years of her life. A highly successful attorney who had overseen an entertainment company in California, Johnson in 1996 became bedridden; struggled to breathe; lost her ability to reason and think; and endured numbness, tingling, and arthritic pain. Doctors did not consider tick-borne disease, and though an avid hiker who had encountered ticks and had had a bull’s-eye rash, neither did Johnson. She was diagnosed with depression, and, because nothing worked, cycled through more than fifty different rounds of psychiatric medications over the years.
The twin pictures, published in the journal Psychiatric Times, explain why her youngsters, five and seven years old at the outset, lost their mother for much of their childhood. This is another toll of tick-borne disease on children. In the left picture of Johnson’s brain, as if the lights were out, is a dark red sphere with ugly blotches of blue and black around the eye sockets and temples. On the right is the same brain with the sun out. It is lit up in shades of orange and yellow with a hint of blue in the front. The first picture is Johnson’s scan from 2002, when she was diagnosed with Lyme disease. The second, in 2004, is after she had been treated for two years with intravenous and oral doses of antibiotics for Lyme disease and several other tick-borne infections. “The depression never returned,” the article stated in 2007. Despite some lingering arthritis and such, “she has mostly returned to her active lifestyle.” When I spoke to her a decade after that article, Johnson agreed.
Alison Murphy, meantime, searches for signs of improvement in Troy who, when I visited him in late 2016, was early on the path taken by Johnson. Alison is hopeful. Troy cracks a joke sometimes. He is in much less pain. He drank some chocolate milk. Still, he does not walk. He does not lift himself from the bed in the living room. Maybe more time is needed. Maybe too much damage was done. The Murphys wait and wonder.
Among their concerns is how to pay a $487,000 bill for his seven-week stay at the New York hospital. The irony is that while he received little attention to his tick-borne maladies there, aside from about thirty days of sporadic intravenous antibiotics, Troy was given a diagnosis that shocked Alison Murphy. There in his papers, listed as Discharge Problem 2, after “loss of appetite,” was the issue doctors assiduously avoided discussing or acknowledging: “chronic Lyme disease.” The hospital nonetheless passed the buck, advising a follow-up visit with an infectious disease physician. “Will not send any prescriptions for the antibiotics…for Problem 2,” the discharge document stated. That sentence exquisitely captures the radioactive quality of late Lyme disease in America and many countries. Let someone else handle it.
Joseph: Lesson Learned?
Joseph Elone’s Lyme disease was missed under a set of care guidelines that require positive readings on each of two tests that its authors have defended so vigorously that no other diagnostic has been able to take its place. The trust-the-test mentality that permeates Lyme disease care, even in the face of risk factors and sickness, cannot be tolerated. Joseph’s cause of death was Lyme carditis, a condition often referred to, on the one hand, as rare, involving one in a hundred reported cases, and on the other, as treatable. For Joseph, Borrelia burgdorferi bacteria impeded the flow of electrical impulses that controlled the beating of his heart. In medical parlance, the infection led to heart block. And it killed him.
In 2009, researchers at Children’s Hospital in Boston studied 209 children with early disseminated Lyme disease—generally meaning the bacteria has moved from the site of the bite—and found that 33, 16 percent, had spirochetes in their hearts. Seven percent had advanced heart block. Is that rare? In serious cases, a temporary pacemaker is sometimes installed for Lyme carditis and occasionally a permanent one if doctors are unaware that Lyme disease is at the root of the abnormal heart function.
Four months after Joseph’s death, the CDC published a report of three Lyme carditis deaths in the Northeast within ten months; it did not include Joseph’s. Up until then, just four Lyme carditis deaths had been reported worldwide in all of the medical literature. In one of the new cases, a resident of Massachusetts who had complained of feeling unwell for two weeks was found slumped over the wheel of a car. “Abundant spirochetes” were found in the patient’s tissues, the report stated. In the second, a Connecticut resident went to an emergency room with shortness of breath and anxiety and went home with an antianxiety medication. He died the next day. “The patient lived on a heavily wooded lot and had frequent tick exposure,” the report said.
As a reporter for the Poughkeepsie Journal when the CDC report came out, I ferreted out the identity of the third carditis case, a thirty-eight-year-old father of three and correction officer in training who, like Joseph, lived in Dutchess County, New York. It meant that within thirty-five days, two people had died of Lyme carditis about fifteen miles apart. “He was home in Beacon with his three daughters, six, eight, and seventeen, hanging laundry in the yard on a warm July day,” I began the article. “Then, in an instant, he was holding his chest, staggering into the house, pushing furniture aside in a way that made the girls think daddy was clowning around, the way he sometimes did.” His wife, who had asked that his identity be withheld, told me the signs were there. “Had he gone to the doctor, he might still be here today,” she said. Perhaps. One of the three people in the CDC report had sought medical care, but as in Joseph’s case, the signs were missed. I suspect such oversights occur in part because of how Lyme disease is viewed: The tests work. It is overdiagnosed. It is easy to cure.
Of note, donated corneas from two of the Lyme carditis fatalities were transplanted to three patients. One recipient died before being notified that Lyme disease had been found in the donor’s heart. The recipient’s death was attributed to unspecified “unrelated causes,” although no tissues were available for examination. The two other inadvertent recipients were prescribed antibiotics.
A play was written about Joseph Elone, called The Little Things, attesting to the power of a tiny tick to wreck lives and upend families. Emmauel Elone was interviewed by my newspaper days after losing the brother who had completed his family. He was eighteen, a boy three weeks from going away to college who was experiencing the toughest chapter in any life. “You should never take life for granted,” he said, straining for words. “You should always make sure that you love one another every day. You never know when they’re going to go or how they’re going to go.” He then folded into his father’s arms. He and Joseph, he wrote in a blog at Georgetown two years later, were “the closest friends that either of us ever had.”
A team at Westchester Medical Center, led by pathologist Esther C. Yoon, wrote a report on Joseph’s case, which did not lay blame. “Here, we report a rare example of fatal Lyme carditis in an unsuspected patient,” it stated. The case study, published in Cardiovascular Pathology in 2015, included this acknowledgment at the end: “We remember Joseph as a kind, gentle, and caring person. Based on his interest in science and his compassionate nature, we believe he would approve of this manuscript to understand the disease that took him away from us.”
CHAPTER 10:
Lyme Takes Flight
* * *
In 2008, veterinarians in Canada were asked to pitch in on a project with pressing implications for human health. The question: had an anticipated wave of Lyme disease arrived, and where was it emerging? In the United Sta
tes, where disease-ridden ticks had already spread widely in the Northeast and Midwest, dogs had long served as loyal if hapless sentinels of Borrelia burgdorferi infection. Twenty years earlier, Tufts University researchers had found they could use cases of Lyme disease in dogs to predict risk factors for the disease, human and otherwise. Dogs that lived at lower altitudes, namely near the coast, were five times more likely to be infected than others. Sporting dogs, those that romped through fields, were four times as likely. Moreover, and this is where Canada took a page from American Lyme history, the Tufts researchers found they could accurately predict the incidence of Lyme disease in people by looking at rates in dogs.
After collating reports from 238 veterinary practices involving more than 80,000 dogs, the Canadian study indeed found Lyme disease moving steadily, but ominously, north of the US border, at least in dogs. The risk was “low but widespread,” the study found, but with distinct areas of higher prevalence. It was these areas, and what the researchers did not report in their data, that intrigued John D. Scott.
In 1990, Scott was working as an agrologist—an occupation involving crop production—when he was diagnosed with Lyme disease in a place where the bug was not supposed to be: his hometown of Fergus, Ontario, a small city on the Grand River in a triangle of Canada bordered by three Great Lakes. That tick bite ended Scott’s career, changed his life, and set him on a scientific journey unique in the vast landscape of tick-borne disease research in North America. Over the next quarter-century, he became a leading published scientist on the movement of Lyme disease, birds, and ticks into and within Canada, work for which, he will tell you, he earned “not a cent.” His scientific papers list his affiliation as “Research Division, Lyme Ontario,” which is an advocacy group for Lyme disease patients. He does not, as many other Lyme scientists do, have the title “doctor” in front of his name or a high-class university position after it. No matter. “Name me chapter and verse where a Ph.D. is required to produce valid science,” he said when I asked about his educational pedigree.
When Scott studied that report of 80,000 dogs and the tick-borne diseases they harbored, published in 2011, he noticed something that the study authors had not. The highest rates of infected dogs, he saw, were not along coastlines or near cut up bits of forest that are known to be hotbeds of Lyme disease. Rather, the line of highest infection closely followed invisible aerial highways used by songbirds—the common yellowthroat, golden-crowned sparrow, Swainson’s thrush—on their annual north-south migration. As Scott had long believed, birds were dispersing ticks as they always had, but with a new and insidious kick; one called Borrelia burgdorferi, the Lyme disease pathogen. As he interpreted the canine data, he saw that the country’s migratory flyways were veritable roadmaps for a growing epidemic. The highest prevalence of infected dogs aligned neatly with three of Canada’s four migratory bird highways: the Atlantic flyway, running through the Maritime provinces, southwestern Quebec, and southern Ontario; the Mississippi flyway, which passes through northwestern Ontario and southern Manitoba; and the Pacific flyway, which goes north into southwestern British Columbia.
For Scott, a man with a broad, toothy smile, white cropped hair, and firmly held opinions on PhDs and otherwise, it made sense, given all he learned from the birds he had caught, examined, tested, and banded over two decades. Take the Blackpoll warbler he had captured, which flies up to eighty-eight hours straight from Canada to its wintering grounds in Puerto Rico and northern South America, returning the following spring. He had found one with an Ixodes scapularis tick firmly attached, one of many firsts he has reported in the scientific literature: First Lyme-infected tick on an indigo bunting. First finding of three tick species sharing rides, or “cofeeding,” on the same birds. First spotting of a tick that had never been reported in Canada, Ixodes affinis, and another one, Ixodes auritulus, never before seen in the Yukon.
In a three-year study, he and two colleagues pulled 481 ticks from forty-two species of migrating birds, from Oregon juncos, spotted towhees, swamp sparrows, and American robins. That the birds were carrying fifteen different species of ticks was one thing. Quite another was what these ticks brought along. Nearly 30 percent of 176 Ixodes ticks were infected with the Lyme pathogen. As concerning was this: half of the larval ticks—namely, tick babies that usually hatch clean and pathogen-free—were now infected after taking their first meal. That could mean only one thing: The “larvae almost certainly acquired borreliae directly” from the migrating birds, which themselves were “competent reservoirs” of infection. Not only could the birds import ticks into Canada. They could also infect them with the pathogen. “Our results suggest that songbirds infested with B. burgdorferi-infected ticks have the potential to start new tick populations endemic for Lyme disease,” Scott’s paper declared.
Other scientists, like Scott, were taking notice, in particular that birds weren’t only carrying the Lyme pathogen. On an island in the Baltic Sea off Germany, popular for migrating birds, researchers from Friedrich Schiller University collected nearly 200 ticks from 99 ground-feeding birds. Seven percent of the ticks were infected with Rickettsia, a spotted fever pathogen; 5 percent carried Babesia, and 3 percent were infected with Anaplasma, they reported in 2007. All of which begs the question: In the global spread of tick-borne pathogens, are birds leading the way?
Ever since the 1980s, when HIV spread around the globe in less than a decade, authorities have worried that hitchhiking germs from far-flung places were merely a plane ticket away. Indeed, the Zika virus, with its potential to cause devastating birth defects, hopped oceans in the mid-2010s in the blood of human beings; those people then infected biting mosquitos in their homelands that went on to spread the virus to other people they bit. Such is the deviously ingenious way of disease transmission. But tick-borne pathogens have their own clever ways of disseminating, geographically and otherwise, that is beyond the reach of any public health travel advisory or warning to wear DEET.
Every spring, about 3 billion passerine birds, including but not limited to songbirds, bring some 50 million to 175 million I. scapularis ticks—the ones that impart Lyme disease—into Canada, a government study estimated in 2008. Some birds arrived in Nova Scotia so infested with ticks that researchers posited they had to have stopped along the Atlantic flyway in the northeastern United States, where the ticks have been rampant for decades. Some of the imported ticks came from as far south as Brazil and dropped their cargo as far north as the Yukon. In 2008, the Public Health Agency of Canada mapped the future expansion of ticks and, moreover, of Lyme disease throughout the country. In the previous decade, government and university researchers had watched known populations of Ixodes ticks sprout from a single location in the far south of Ontario to twelve more locations—along Lake Erie; on the fringes of Thousand Islands national park; in Nova Scotia; and in southeastern Manitoba. They were bracing for more. Among the data fed into a computer simulation, along with projections of warmer weather, the tally of forested land, and the range of known tick populations, was something called “an index of tick immigration.”
Plainly put, a mass migration would deliver more ticks and likely more disease to Canada in coming years, in the form of beautiful waves of song sparrows and wrens, red-winged blackbirds, and warblers of many kinds. And a warmer climate would help these ticks survive in many new places. In a description that sounds something like a page out of a Superman comic, an article in the International Journal of Health Geographics stated, “These migratory birds are capable of surmounting geographic features (lakes, sea, mountains and areas of intensive agriculture) that are obstacles to dispersal by terrestrial hosts.” Perhaps they aren’t scaling buildings in a single bound, but these birds are traversing continents by the billion.
Hopping Mainlands, Crossing Seas
The dispersal of ticks by birds isn’t limited, of course, to the North American migratory flyways. In Germany, thrushes, blackbirds, robins, and blackcaps fly the skies from as far away as Sub-Sa
haran Africa or as near as southern Europe. They sometimes arrive with dozens of ticks tacked around their eyes, ears, and beaks, mostly of the Ixodes ricinus or castor bean variety. In a German study of 3,000 ticks harvested from nine hundred birds from 2008 to 2010, researchers computed such things as the share of birds with ticks (3 percent), the average number of ticks per infested bird (3.8); the proportion of ticks infected with the Lyme disease pathogen (about 6 to 9 percent). It is tedious messy work—removing, counting, identifying, and testing arthropods that are sometimes no bigger than a speck of dirt. But it allows scientists to make important deductions. Short distance migrants, for one, were twice as likely to carry ticks, because the arachnids hadn’t yet finished feeding and fallen off. Like passengers on modern jets, they fed in the air on a Mediterranean to Germany flight, importing pathogens, the scientists wrote, to “new potential foci.” When Gunnar Hasle was working on his PhD thesis at the University of Oslo in the early 2010s, he was impressed by the capacity of birds to cross “mountains, glaciers, deserts, and oceans.” It had never been shown that birds had actually seeded a new tick species or pathogen, he observed in 2013, but a case was surely building: “Evidence strongly suggests that this could occur.”
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