What happens when illnness becomes an identity?
Among the symptoms that chronic-Lyme patients describe, “brain fog” is the one everyone talks about: trouble thinking and focusing, forgetfulness, confusion. There’s fatigue, the kind of exhaustion that might make it feel too arduous to get out of bed. Then there’s pain—headaches, joint pain, muscle pain, pain that won’t go away. Or maybe the pain does go away—it comes and goes. Or maybe there’s nausea. Or your eyes hurt. Or you’ve got panic attacks, or bladder issues
Polly Murray, in the 1960s and ’70s, was a mother of four with an old house on several acres in Lyme, Connecticut. In the summer, her kids built forts in the woods; they ice-skated on frozen cow ponds in the winter. The Murrays had an idyllic life in the country. They also had enormous rashes, strange joint swellings, and recurrent fevers.
One son wound up in the infirmary at boarding school, unable to lift his leg. Another had to have the fluid drained from his knee. Murray was constantly taking herself or her husband or one of her kids to a doctor—but none of the doctors ever had answers, nor did they seem especially interested in finding any. So Murray took the search upon herself. In The Widening Circle, her 1996 memoir, she reproduces extracts from her diary (“Monday, July 28: Todd had a fever of 100 again for two days and a severe jaw ache; he said it hurt to open his mouth … The attack lasted for five days”). The record Murray gathered is a testament to both the relentlessness of the symptoms and her own relentlessness in tracking them. Her husband compares her to “the lonely hero of a Hitchcock movie”: isolated, embattled, and disbelieved.
Soon, though, Murray started to hear other stories like hers. Her area, it appeared, had a cluster of juvenile-rheumatoid-arthritis cases. She called the state’s health department and met with Dr. Allen Steere, a rheumatologist doing a fellowship at Yale. He pored over her pages of notes. On the car ride home, Murray wept with joy: Steere didn’t have any answers, but he had listened. He wanted to find out what was wrong. By 1976, the condition Murray had observed had become known as Lyme disease.
“Lyme disease was a disease born of advocacy,” Dr. Paul Auwaerter told me. Auwaerter, whose lab focuses on Lyme and other tick-borne diseases, is the clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine. Back in the ’70s, Murray and her fellow Connecticut mothers had to fight for attention. Their experience left behind a powerful legacy, Auwaerter said, a sense that perhaps “the medical establishment didn’t really listen initially or were trying to be dismissive.”
Decades after Polly Murray kept her diary of symptoms, the spirit of advocacy associated with Lyme disease endures. But while Murray’s efforts were ultimately vindicated by medical science, a new fight—for the recognition of something known as “chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite—has grown into a phenomenon often untethered from scientific method or peer review. The chronic-Lyme community has a new agenda, one that was visible at last fall’s Global Lyme Alliance Gala in New York, where supporters gathered at Cipriani heard a speech from Real Housewife of Beverly Hills Yolanda Hadid.
On the show, Hadid’s diagnosis had became a major plotline; it represented a breakthrough moment in pop-culture Lyme-disease awareness. Two of her children, the models Bella and Anwar Hadid, also have Lyme diagnoses. They join an assortment of famous and fame-adjacent spokespeople who have “opened up” about Lyme: Avril Lavigne, Kelly Osbourne, Ally Hilfiger, Crystal Hefner, and Rob Thomas’s wife, Marisol. Hadid’s speech at the gala was brief— she was in the midst of a relapse, she said, so she hadn’t really been able to write anything—but the hardest part about having Lyme disease, she told the crowd, was people not believing she had Lyme disease. “My biggest struggle every day was people telling me that maybe I have Munchausen disease,” Hadid said. “ ‘How can she look so beautiful and be so sick?’ ‘How can she be in bed seven days a week and then show up to work?’ Well, I did,” she said. And then, to applause, “Because I’m a badass Dutch girl. But it wasn’t easy.”
This is the rallying cry of the Lyme Warrior. Spend a while browsing #lymewarrior on Instagram and what you find looks like wellness content at first. There are selfies, shots of food, talk of toxins, exhortations toward self-care. There are more extensive arrays of supplements than you might expect. Then the IVs snake into view. There are hospital gowns and seats at outpatient-treatment centers and surgically implanted ports displayed with pride. This is wellness predicated on the constant certainty that all is not well. Like Hadid, the Lyme Warriors struggle against those who would doubt their condition, and, like Hadid, they are firm in their resolve. They have a name, and they have each other.
Where Murray sought to answer a question, the warrior who now takes up the cause of chronic Lyme is seeking to affirm an answer. For this community of patients, Lyme has come to function as something more expansive than a diagnosis. While Lyme disease is a specific medical condition—one that may manifest more severely or less, be treated more easily or less—chronic Lyme is something else altogether. (The medical establishment generally avoids using the term chronic Lyme, and because of this establishment wariness, advocates who believe Lyme is a chronic infection now sometimes advise patients to avoid it too.) This version of Lyme has no consistent symptoms, no fixed criteria, and no accurate test. This Lyme is a kind of identity. Lyme is a label for a state of being, a word that conveys your understanding of your lived experience. Lyme provides the language to articulate that experience and join with others who share it. In the world of chronic Lyme, doctors are trustworthy (or not) based on their willingness to treat Lyme. Tests are trustworthy (or not) based on their ability to confirm Lyme. Lyme is the fundamental fact, and you work backward from there. Lyme is a community with a cause: the recognition of its sufferers’ suffering—and, with it, the recognition of Lyme.
THE HOME PAGE OF Lyme Resource Medical of New York shows Central Park, with distant sunbathers scattered across a rolling expanse of grass. While the name suggests a degree of institutional grandeur, Lyme Resource Medical is primarily the practice of
Dr. Bernard Raxlen, and its offices are a small fifth-floor warren of rooms near Times Square.
Raxlen is one of the first names you’ll find if you search for a Lyme-disease doctor in New York. The Lyme community’s word of-mouth network makes certain doctors—like Richard Horowitz, the best-selling author of Why Can’t I Get Better—into niche celebrities, and within this milieu, Raxlen has the status of an elder statesman. Twenty years ago, he was one of the doctors who founded ilads, the International Lyme and Associated Diseases Society, which issues its own treatment guidelines, intended to counter those of the medical establishment. He inspires fierce reverence among patients. “Tears streamed down my face,” wrote Jennifer Crystal of watching him speak at a 2012 ilads conference. Crystal, whom Raxlen began treating in 2005, blogs about chronic Lyme for the Global Lyme Alliance. (Her recent posts include one on an experience she calls “song iteration”—having songs stuck in her head for “days, weeks, even a month”—which she describes as a “maddening symptom of neurological Lyme disease.”) Allie Cashel, another longtime patient of Raxlen’s, is the author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial, a 2015 memoir that begins when she comes into Raxlen’s care as a child after he diagnoses her Wall Street father with chronic Lyme. “Thank God for Dr. Raxlen,” Cashel’s father tells her. “He had the guts to go against a lot of conventional wisdom, and I will be forever grateful to him for that.”
You are unlikely to find yourself in this office unless you’re already considering the possibility that you have Lyme disease—perhaps you saw something online or heard something from a friend. Still, a Lyme-literate doctor like Raxlen is the gatekeeper who validates chronic Lyme as an identity. Lyme-literate doctors are often referred to as LLMDs, though the title doesn’t reflect any specific set of qualifications or credentials. ilads offers a daylong course in Lyme fundamentals and, through its educational arm, the International Lyme and Associated Diseases Educational Foundation (iladef), a one-to-two-week training program for clinicians. The only prerequisites for the latter are completion of the Lyme-fundamentals course and the ability to prescribe antibiotics.
When I visited, Raxlen’s waiting room had two black leather couches and a narrow bookcase in one corner. Among the titles on its shelves were The Creator and the Cosmos: How the Greatest Scientific Discoveries of the Century Reveal God and Get Rich Click! The Ultimate Guide to Making Money on the Internet. As I waited for him to finish an appointment, I read a children’s book I’d found among the issues of WebMD magazine on the coffee table. Learning About Lyme is written by Raxlen and relates the story of a little girl named Annie. “Annie has been real sad lately,” reads one page. “Her personality has changed from bright and sunny to dark and moody. Drastic changes in your personality can be a sign of Lyme disease.”
From Raxlen’s office in the back drifted snatches of conversation. “I could get bit again?” said a woman’s voice. “Oh yeah, I’m not going on the lawn at all!” A few minutes later, a woman in gym clothes with long blonde hair and a tight face emerged. She took a seat on the other couch and began to fill out a sheaf of paperwork.
Raxlen brought me back to his office, past a wall with a large black-and-white photo of himself in younger days, when his rakish goatee was still dark. The CV posted on the Lyme Resource Medical site lists stints in Guatemala, Hawaii, Israel, and Brazil; not until he’d settled in Connecticut and was practicing as a family therapist did he turn his focus to Lyme disease. He is trained as a psychiatrist, but he is not board-certified in that or any other specialty.
When a new patient arrives in Raxlen’s office, “you test them first,” he told me. “You’d send the blood to a—” He paused and seemed to consider the next word. “A respectable lab. The bigger labs don’t usually get it right. Their tests are pretty antiquated.” The mainstream testing process for Lyme measures a patient’s antibodies, which has made it a source of consternation: Within the first week or so after infection, a patient may not yet have an immune response sufficient to show up on the test and could produce a false negative. (“From that has sprung the sense, often advocated, that the test is not very good at understanding the symptoms,” Johns Hopkins’s Auwaerter said. “When, in fact, I think it is very good.”) Lyme-literate doctors will ask that patients do their testing through specialty Lyme labs that apply their own criteria in measuring results and describe their offerings as “more sensitive.” Among the most prominent is IGeneX, a Bay Area lab whose founder and longtime CEO was a co-founder of ilads.
Even so, having done the test, “you don’t believe the test,” Raxlen told me. “Too many people are sent away with a diagnosis of NLD—not Lyme disease. And that’s because the tests come back negative. You can’t rely on the test to differentiate a Lyme case. You must go by the clinical symptoms.” Diagnosis is a matter of trusting “your own radar,” he said.
THE SIMPLEST, standard-issue textbook case of Lyme looks like this: A tick carrying the disease bites a person, who then develops an expanding bull’s-eye rash around the bite. (This happens in some 70 to 80 percent of cases, according to the CDC.) This is the point at which the person would probably see a doctor, who’d prescribe a short course of antibiotics. A sufferer might also miss the rash and seek treatment later, after developing Lyme’s other early symptoms, like a fever or painful swollen joints. A doctor in a Lyme endemic area (like the East Coast or the Upper Midwest) would then administer a two-tier test for Lyme antibodies and prescribe antibiotics if it came back positive. But there can be complications or extreme cases, which include infection of the brain and nervous system. Sometimes people don’t notice a bite or don’t develop a rash, so they never get diagnosed and the disease progresses and grows severe. And some patients who have been treated for Lyme experience lingering symptoms afterward—sometimes referred to as post-treatment Lyme disease, or PTLD.
No one disputes that Lyme disease can leave patients with longterm symptoms; the source of disagreement is their cause. Is the illness the aftereffect of an infection that has passed? Or is it an ongoing, active infection, the kind that might require continued treatment with antibiotics? At present, the vast majority of main stream medical authorities do not support the use of long-term antibiotics for persistent Lyme symptoms; this includes the Centers for Disease Control, the National Institutes of Health, the American Academy of Neurology, the American College of Rheumatology, and the Infectious Diseases Society of America.
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July 22 - August 4, 2019