Lyme

by Mary Beth Pfeiffer

  The doctor then wrote this: “IMPRESSION: Dehydration, possible aspiration. Rheumatoid arthritis, possible Lime’s [sic] disease. Marked inanition,” which means a kind of lifelessness wrought by lack of sustenance.

  I tell Kara’s story for several reasons. For all the anguish Kara’s parents went through and all the damage she sustained, her story has an inspirational quality and a happy, if bittersweet, ending. Kara was so sick, unable to rise from bed, that the family removed the shoes from her younger brother’s horse and brought it into the house, tail swishing, hooves clomping. Calves and baby goats were tramped through at birthing time, newly hatched chicks too, all to strengthen Kara’s will, “to find that joy,” she said, to enliven her spirit. Friends peeked in from the first-floor window, close enough to play with Kara but not to expose her to germs.

  Children whose Lyme and tick-borne disease has dangerously progressed sometimes prevail against the bug. But the story of runaway childhood Lyme disease is not primarily about the solution, which in Kara’s case—in most—is controversial and will not work for everyone. Kara’s and the other stories I will tell here are about the search. For the parents of a child with late-stage Lyme, the quest for a diagnosis and then for care is draining, time-consuming, fraught with difficult decisions, and expensive. Undoubtedly, many children are lost along the way, to disability or worse, to parents who love but are less able or endowed than Kara’s. This is not a journey for the faint of heart because in this one infection, unlike almost any other, institutional medicine is of little help. There is no accepted standard of care. There is, indeed, very little care.

  In cases like Kara’s, thirty years ago, as in those today, late-stage Lyme disease presents parents with a guaranteed and painful quandary. They have children who suffer debilitating, life-changing symptoms of a disease that mainstream medicine does not acknowledge exist. The accepted version of Lyme disease is as an acute, curable infection. What these children have, the tenets of the Infectious Diseases Society of America (ISDA) hold, is something else. But it is not Lyme disease.

  This is the nub of the Lyme controversy, the one that has stymied research and hardened medical practice. Picture yourself with a sick child in the middle of one of the biggest controversies in medicine today. Then add in that doctors may belittle you and reject any suggestion that your very ill child may have Lyme and other tick-borne disease. Tests don’t work so you will be sent from doctor to doctor for an answer that must be anything-but-Lyme. Further, health insurance will not pay for treatments that deviate from the standard Lyme protocol, even if those treatments are safe and standard for other ailments like acne or tuberculosis. And though long-term antibiotics are not ideal, they are all we have precisely because the pleas of parents and patients have been ignored. “I can’t believe this is happening,” a mother from Thunder Bay, Ontario, Jennifer Bourgeois, told me as she related her emotional quest for care, including fourteen-hour car trips to a US doctor, her son, Brody, thirteen, moaning and prostrate in the back seat. “Nobody deserves to have disrespect and be shunned like my baby was.”

  In the Netherlands, an advocacy agency called the Interest Group for Intensive Child Care looked into growing complaints by parents who had been investigated by child welfare authorities. The group was shocked to learn that 50 of 168 reports over an eight-month period from 2016 to 2017 were from parents of children with Lyme disease. The reports coincided with a change in reporting procedures in which schools and others were encouraged to report anything suspect, and many did. Some of the children with Lyme had been removed from homes; some parents had been accused of inflicting illness on their children or failing to follow medical advice they believed was wrong. The group studied each child’s records and concluded that none of the suggestions of neglect or abuse had merit. What the parents had done was what parents do. They had believed their tick-bitten children remained sick after treatment, had kept them out of school, or had sought treatments from doctors, sometimes in Belgium or Germany, who practice a different style of Lyme disease care. “Only medical treatments which are according to Dutch standards are allowed,” said Vera Hooglugt, who analyzed the parents’ reports. “Children are so sick they cannot go to school. The school says there is nothing wrong with you. They cannot walk. They are lying down all the time.” So, under the new liberal reporting policies, the schools alerted authorities, in what can be a life-changing event that permanently estranges parent and child. “They don’t understand what it is for a child and a family when there is a report, a false report,” Hooglugt told me. “What it does to a family and a child.”

  In Canada and the United States, parents like Kara’s have similarly reported that they faced charges of medical neglect over their Lyme care choices. A sixteen-year-old girl told officials at a Pennsylvania hearing on Lyme disease in 2001: “My mother, an RN who took me all over to find a diagnosis…was actually accused of Munchausen’s by proxy” – namely conjuring or causing her child’s illness – “because she was trying to get her sick daughter well.” As with the Dutch parents, the accusation had been linked so often to Lyme disease that in 2005 an article in the journal Medical Hypothesis suggested it amounted to “medical misogyny,” a way in which doctors had minimized, even criminalized, the complaints of concerned women for their children. Other mothers told me of similar insinuations by doctors or fear of it; a Dutch woman who had sought antibiotics for her little boy declined to be named for fear it would alert authorities. A Connecticut mother, Kelli Avci, spent eighteen agonizing months under investigation by child welfare authorities who questioned her son’s prescribed antibiotics and his gluten-free diet before closing the case without explanation. “I can’t even begin to tell you all I’ve gone through,” she said. Such is the strange, contentious and highly politicized world of tick-borne disease.

  Troy: ‘No Such Thing as Chronic Lyme’

  Alison Murphy got the news in a hospital room on March 31, 2016; she remembers the moment well. It was when she lost faith in a medical system she once thought functional.

  Just six weeks before, her son, Troy, had been a wiry fifth-grader who played soccer, loved to be-bop dance, and stood out in a family of five boys for his silly, endearing sense of humor. Then, her blond, bespectacled boy of ten had a second bout in six weeks of flu, this one much worse than the last. Troy had headaches, fever, and lethargy so intense he could barely move. He began to drag his right foot. His legs and stomach hurt; he could not eat. On March 11th, his parents brought him to a local emergency room, where he underwent an abdominal ultrasound and an overall workup. Doctors found nothing wrong and released him. Things got worse. Troy lost fifteen of his seventy-five pounds. He was in excruciating pain, hypersensitive to touch, and regressing physically and emotionally. On March 24th, he was admitted to a hospital for dehydration, where he was described in his chart as “uncomfortable, consistently crying, reporting constant pain.” After eight days as an inpatient there, numerous tests, and an ordeal that was torture to a bewildered, angry, and uncooperative Troy, doctors had an answer.

  “Troy’s presentation,” his discharge papers concluded, “continues to be most consistent with diagnosis of pain amplification syndrome.” In other words, Troy’s symptoms were not physical but psychological. One doctor suggested the problem might be “schoolitis.” And so on his release from the hospital, this withered little boy was prescribed two antidepressants and referred to a psychiatrist. He was told to get out of bed everyday at 9 a.m. and instructed to use breathing techniques for his pain. This happened to a child who between his ER visit and hospitalization had been diagnosed by a pediatrician with Lyme disease, a potential diagnosis that hospital doctors did not pursue. There is no evidence of tests for tick-borne illness in his discharge papers, which include only this reference: “Mom states he is currently being treated for Lyme disease…and started doxycycline last week.” That was it. “They never wanted to hear another thing about it,” Alison Murphy recalled in recounting her son’s o
rdeal.

  Kara Wilson was infected decades earlier in a place where and at a time when Lyme disease was barely known. Her long search is perhaps understandable. But Troy was infected in the American state of Connecticut, famous as the place where Lyme disease emerged in a coastal town forty years earlier. Drive an hour from Troy’s home, and there’s Yale University, the source of groundbreaking research on the pathogenesis of Lyme disease. Drive another hour, and you get to New York Medical College, where the world’s supposed leaders in Lyme disease care are based. Yet Troy was given a psychiatric diagnosis and denied care for physical disease. It must, the prevailing wisdom goes, be something else.

  This is not an isolated event; a little girl diagnosed with tick-borne infections named Fiona, nine, had a disturbingly similar experience to Troy’s at about the same time and at the same hospital. “It was almost like they were laughing at our lab results,” which, ordered by an outside Lyme practitioner, were positive for several tick-borne diseases, her mother, Laura Radmore, said. Here, at the very epicenter of the Lyme disease pandemic, tick-borne diseases and their many complications go unexplored and untreated. Consider what happens in countries around the world.

  Sweden: A tick-bite at age five, a childhood filled with sickness, and, finally, depression led Alice Wallenius, nineteen, to a clinic in England, where she received the treatment no doctor at home would give her. She got better. The Netherlands: Childcare authorities twice threatened to take Erica Vrijmoet’s three children, whose symptoms had baffled Dutch doctors but who were diagnosed with several tick-borne diseases by a Belgian physician. For years, her youngest daughter, who was six when taken ill, feared being taken from her home. Australia: The mother of an eight-year-old girl named Sophie, infected since she was two, told me, “We avoid hospital at all costs.” Doctors routinely tell patients, she said, “It’s all in your head.” United States: A Massachusetts mother, Jean Derderian, in discussing her son, then fifteen, who was desperately ill with neurological Lyme disease, said, “We’re so isolated. There’s no hospitals. There’s no care.”

  These are children whose childhoods are lost because of the simple bite of a tiny, common, insidious creature known in North America as a blacklegged tick; in Europe, the castor bean tick; in Russia and Northern China, the taiga tick, cousins all in the sweeping, and growing, Ixodes family. In the United States, children five to nine years old have the highest rates of hospitalization for Lyme disease. Boys that age have long had the highest rate and number of Lyme disease cases—nearly 20,000 in the United States from 2001 through 2015 and ten times that when underreporting is considered. The next biggest group was boys, like Troy Murphy, from ten- to fourteen-years-old.

  Troy Murphy may be a canary in a coal mine, akin to the cases of gay men in the early 1980s who turned up with an unlikely cancer called Kaposi’s sarcoma that opened the era of HIV. He may be a sentinel, and, to be sure, there are more like him. Unlike stories of AIDS, however, tales from the Lyme epidemic have changed little from the 1980s to 2010s. That is, with one very big exception. Early on, the issue was Lyme disease, a single infection that left a sliver of victims inexplicably disabled and in pain. Now, the larger problem is often the damage done by a constellation of pathogens that live in the bellies of ticks, a concept widely accepted in the scientific literature but disputed at the hospital door. Parents, consequently, must seek help elsewhere, or they must take what is offered. For these unrecognized, unacknowledged infections, medicine’s menu is limited and sometimes harmful. It includes psychotropic medications, counseling—“cognitive behavioral therapy” was suggested to patients I met with in England—and psychiatric hospitalization. For more blatantly physical symptoms, there are steroids, minimal antibiotics, pain relievers, and a host of drugs used for arthritis, multiple sclerosis, and fibromyalgia. Many of these are ineffective and inappropriate because this approach fails to reach the underlying cause—an illness delivered in the bite of a tick.

  After his first hospital stay, Troy continued on a downward spiral, with other unproductive trips to emergency rooms and hospitals. In December of 2016, eleven months after he got sick, I visited him at his home—barn-red clapboard with a white-columned porch and a fluttering flag—on an idyllic young cul-de-sac in a suburb of Hartford. There, a large living-kitchen area had morphed into a hospital room that featured get-well cards atop a white fireplace mantle and Christmas stockings hanging below. Troy, bedridden and attached to a feeding tube, was draped by a plaid wool blanket. His protruding feet splayed outward, a sign, along with eyes that jumped rather than tracked movement, of neurological disease. His thick blonde hair, once cut with military precision, now folded around his ears and shoulders. He sometimes moaned softly, sometimes grunted at offers of help from his mother, a slim, youthful woman with long blonde hair who had a way of reading Troy through long, probing glances, of knowing if he was in pain. Dr. Charles Ray Jones, a pediatric Lyme specialist from New Haven, Connecticut, was there too; he held Troy’s hand and talked him through a gentle examination. Troy had distrusted doctors since his first hospitalization, when he had endured painful poking and prodding but had not been believed. Jones, eighty-seven years old and with a few thousand such cases behind him, had found a way around this.

  A large man with black frame glasses and receding salt and pepper hair, Jones had decided to become a doctor in 1954 when, as a Boston University theology student, an old woman crippled by rheumatoid arthritis gently rebuffed his ministrations. “Please help me in a real way,” he recalled her saying, cupping his hands in supplication as the woman had. Little did the woman know that Jones would become among the earliest physicians to find that antibiotics worked on a disease that, in early 1970s Connecticut, as yet had no name or known cause. He had observed, as doctors sometimes do today, that children with joint pain and fatigue got better when they were incidentally treated with antibiotics for strep throat. Jones’ pediatric practice quickly filled with Lyme patients. For his penchant to prescribe long-term antibiotics, he had faced professional charges of medical negligence four times and incurred, he estimated, about a million dollars in lawyers’ fees. When I spoke with him in the spring of 2017, he was facing an assessment by a neuropsychologist of his competence. On the wall of Jones’ office is a quote from a friend at ministry school, Martin Luther King Jr.: “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” The quote is not about him, he said firmly.

  When Troy was brought to an emergency room for dehydration in the fall of 2016, the Murphys tried, as many parents have told me they must, to avoid discussing the outside care for Lyme disease they had sought for Troy, to keep it, as Alison said, on the “down low.” The couple knew where such admissions could lead. When she could no longer avoid the question, Alison told hospital staff of having sought Dr. Jones’ care. That’s when the presiding physician called Alison and William Murphy into the hallway. “There is no such thing as chronic Lyme,” he told them in a way other patients have described, of doctors who are very sure they are right. “These supposed Lyme experts are a dime a dozen,” the doctor said. “All they want is to take your money.”

  Charles Ray Jones, dressed in his signature jogging suit and sneakers and walking tentatively with a pronged cane, surely did not seem to be at Troy’s bedside for the money. I had met him a month before at a conference in Philadelphia where, sitting in his wheelchair, he had told me about a desperately ill boy, Troy, who at that moment was in one of the best hospitals in southern New York, where doctors were giving mostly palliative care. Jones was beside himself with worry, his assistant told me then, incensed at the injustice of it. Like doctors at the first hospital in Connecticut, doctors at the New York hospital had refused to consider tick-borne disease in Troy’s workup. By then, tests ordered by Jones showed markers for multiple, and treatable, tick-borne diseases. This is the new Lyme paradigm, the thing that makes Troy’s case important.
He had been exposed to the Lyme disease pathogen, followed by a damaging delay in treatment. Moreover, tests ordered by Jones showed the boy’s blood littered with evidence of tick-borne pathogens, some suggestive, some definitive.

  Troy tested positive for Bartonella henselae, a debilitating bacterium that can be transmitted by a tick, flea, or cat scratch; Babesia duncani, a parasite that causes malaria-like babesiosis; and Borrelia hermsii, also known as tick-borne relapsing fever. (“We don’t have that in New York,” a doctor at the hospital there had scoffed, Alison said.) Troy also had an “equivocal” reading for tularemia, which can cause wracking fevers and can even be a weapon of terrorism, likely explaining why it received more than half of all US funding for tick-borne diseases from 2006 to 2010. Beyond this, there was evidence of Lyme disease in Troy. The boy’s blood had high antibody levels on one test for the Lyme spirochete and what Jones eyed as highly specific Lyme markers on three other tests, namely the “bands” on the second-tier test that I discussed earlier. Two physicians who had seen Troy before his second hospitalization had considered the antibody readings positive for Lyme disease, his records showed, although the findings, from licensed, certified laboratories, would not be ruled that way by the US Centers for Disease Control and Prevention. Too few bands.

  Therein lies the Lyme disease quandary. Two-tiered testing is unreliable, missing a majority of positive cases early and an all-too significant share later, this in best-case studies. Yet alternative Lyme tests to which the sick must resort are not considered good enough. Then there is the increasingly common complication of other tick-borne infections. These, too, have been painted with the same brush as Lyme disease: exaggerated, unproven, and—for doctors who value their medical licenses—risky to treat. “Once you mention tick-borne illness,” a Manhattan neurologist who had treated Troy, Dr. Elena Frid, told me, “all bets are off.”