“It feels like someone came in and confiscated my brain,” Real Housewives of Beverly Hills star Yolanda Foster wrote in 2015. For four years, Foster says that she’s suffered from severely debilitating pain and an intense brain fog that’s forced her to “just watch and see life go by without me participating in it.” The symptoms, she claims, are the result of an ongoing struggle with chronic Lyme disease.
Foster is not the only celebrity to say they have been diagnosed with chronic Lyme. In the last few years Foster, as well as two of her children, Kathleen Hanna, Avril Lavigne, Daryl Hall, and most recently Playboy model Crystal Hefner, have all been treated for the symptoms of chronic Lyme disease. (Some of them say they’ve been diagnosed with chronic Lyme; others simply call it Lyme, but each use language and describe treatments associated with chronic Lyme). On social media, nearly all of them have assiduously documented a range of symptoms as well as series of unconventional treatments, from Ultraviolet Blood Irradiation to detox diets and cleanses to surgically inserted ports that constantly pump antibiotics into their blood stream.
Both symptoms and treatments chronicled by celebrity chronic Lyme sufferers are, to say the least, controversial. Official medical organizations like the Centers for Disease Control and the National Institutes of Health do not recognize the chronic Lyme as a diagnosis; they argue that there is no evidence that such a disorder even exists.
The guidelines for diagnosing and treating Lyme are clear: diagnostic guidelines outlined by the CDC include two laboratory tests to determine whether or not the bacteria Borrelia burgdorferi is present in the blood, combined with acknowledged exposure to the blacklegged tick, Lyme’s most common carrier. The standard treatment for Lyme disease is two to four weeks of antibiotics. About 10 to 20 percent of those diagnosed with Lyme will suffer from Post-Treatment Lyme Disease Syndrome (PTLDS), lingering joint pain and exhaustion that persists after the presence of Borrelia burgdorferi have been neutralized in the body.
According to the CDC, PTLDS can last for up to six months, though some cases have persisted past the half-year mark. The persistence of pain post-treatment is medically inexplicable, but some researchers have suggested that the pain is the result of “residual damage to tissues and the immune system.” There is, for lack of better words, no known medical reason that the pain should endure, and yet it does.
But chronic Lyme—though often and incorrectly used to describe late-Lyme disease (Lyme left untreated for a long period of time) or PTLDS—is something else entirely. It’s unclear when the label itself was created, but it was first used by patients who had a range of seemingly inexplicable symptoms. Like all diseases invented outside of official medical organizations, there is an uncomfortable tug-of-war between an individual’s real pain and overburdened conspiracy theories; theories that often revel in accusations and fantasy.
Chronic Lyme covers a vast array of symptoms, ranging from typical Lyme symptoms like joint pain and swelling to “irregular menstruation” and “exaggerated symptoms or worse hangover from alcohol.” The symptom list for Chronic Lyme, developed by now retired “Lyme literate” doctor Joseph Burrascano, is two pages long, and covers nearly any and all malfunctions of the human body.
Chronic Lyme is the disease du jour in a long and contentious debate over what exactly constitutes illness, and who holds the authority to determine whether or not pain is authentic. The question of authority is a lingering one; from Morgellons to multiple chemical sensitivity, Adrenal fatigue and a host of thyroid disorders, the annals of medicine are filled with diseases and disorders that many claim they suffer from, yet are unrecognized by evidence-based medicine.
Though the debate over who has the power to write medical narratives—to author and authorize real pain—is old, it is particularly contentious within the corner of medicine dedicated to studying Lyme.
The conflict over what constitutes Lyme disease, particularly how it’s contracted and how long the disease can linger in the body, is an acrimonious and complex. The chronic Lyme community—composed of the self-diagnosed, as well as those diagnosed by “Lyme-literate” doctors who oversee alternative therapies, and advocacy groups like the International Lyme and Associated Diseases Society (ILADS)—argue that the medical establishment is engaged in a willful and reckless disregard of the truth about an epidemic that is silently getting worse. Since chronic Lyme is not reported to the CDC, it’s impossible to say how its sufferers have been diagnosed. ILADS has declined to say how many members they have, but the group has a little over 14,000 likes on Facebook. Activists at the LymeDiseaseNetwork.com estimate that over a million Americans have chronic Lyme.
In the middle of that debate are celebrities like Yolanda Foster and Avril Lavigne—people who represent and promote an alternative narrative of the disease, one that differs significantly from the narrative put forth by evidence-based medicine.
Some of the earliest accounts of colonial America contain descriptions of the deer ticks that most commonly carry Lyme. John Josselyn, a seventeenth-century British naturalist who visited New England, described ticks (“tikes”) so numerous that they filled the region’s bushes and trees. “[They] will cleave to a mans garments and creep into his Breeches eating themselves in a short time and into the very fle’sh of a many,” Josselyn wrote in his book, An Account of Two Voyages to New-England, Made During the Years 1638, 1663. Josselyn’s cringe-inducing description was echoed by later explorers, many of whom made note of forests thick with ticks.
Early physicians took note of the familiar bull’s eye pattern rash that normally appears after infection. There are also numerous accounts of the joint pain that follows a Lyme infection and, by the early twentieth century, descriptions of neurological problems and meningitis that are typical of the progression of untreated Lyme disease. Though the symptoms of Lyme were familiar, and doctors had long figured out that penicillin would alleviate them, the cause remained unknown until 1975.
In 1975, a clustered case of what doctors believed was juvenile rheumatoid arthritis broke out in Connecticut, including two towns named Lyme and Old Lyme. By 1977, Yale rheumatologist Allen Steere produced the first detailed account of the infection, suggested that it was caused by ticks, and named it Lyme; the disease’s exact origin, however, was still unclear. That answer would come in 1982 when Willy Burgdorfer, a medical entomologist at the National Institutes of Health’s Rocky Mountain Laboratories, discovered the source: a previously unknown spirochete Borrelia that was definitely determined to be the source of Lyme. In honor of Burgdorfer, the spirochete was named Borrelia burgdorferi.
This is the official history of Lyme disease. Yet like all Lyme narratives, what seems to be simple facts are contested. Many believe that the appearance of Lyme in 1975 was by no means natural; instead, it was the result of an accidental release of purposefully infected ticks housed at Plum Island Animal Disease Center, a federal research facility opened during the Cold War, dedicated to studying animal-based diseases and designing vaccines against them. According to Michael Carroll’s book Lab 257, Plum Island, only eight miles from Old Lyme, Connecticut, was experimenting with ticks as “disease vectors” for the purpose of germ warfare.
Carroll asserts that Plum Island is also responsible for the spread of Dutch duck plague, a herpes virus that was first identified in ducks on Long Island in 1967, as well as the West Nile virus which first appeared in the United States in New York City in 1999. The crux of Lab 257's argument is that Lyme, Dutch duck and West Nile, were discovered within an 80-mile radius of Plum Island. Like all conspiracies, it is novelistic in its form: chemical warfare, the Cold War, an ex-Nazi scientist, and nefarious plots are the stuff of a Don DeLillo rough draft. Yet the themes seem to have touched the psyche of skeptics and conspiracy theorists alike (former governor Jesse Ventura is one of the most vocal advocates of the theory).
Whether or not Lyme disease was the result of germ warfare gone awry, the story seeded a certain distrust of the both disease and the government agencies tasked with establishing guidelines.
Lyme, particularly late-stage Lyme, can be an unsettling and terrifying disease. Left undetected, Borrelia burgdorferi can wreak havoc on the body: pain, arthritis, short-term memory loss, delusions, and a host of neurological symptoms can manifest in the body. It’s hard to believe, perhaps, that such ravages can be fixed with something as common as antibiotics. Indeed, proponents of chronic Lyme argue that, in fact, the spirochete isn’t neutralized or killed by the two to four weeks of antibiotics that’s commonly prescribed to Lyme patients. Rather, they say, patients are persistently infected with Borrelia burgdorferi and standard testing protocols are too narrow to detect the infection.
Chronic Lyme’s earliest appearance came not long after Lyme itself was discovered. Tracking the phrase shows that its usage first appeared in the early 1980s, spiked around 1997, and continues to show a steady and significant increase in usage. The spike in 1997 likely corresponds with a growing public demand to recognize chronic Lyme. “Lyme-literate” doctors and lose groups of patients finally organized in 1999, when they founded ILADS, the most prominent of the chronic Lyme advocacy groups.
ILADS has dedicated itself to creating a cohesive narrative of chronic Lyme. Like any good narrative, this one has a vocabulary of its own. Its literature requires a certain kind of literacy—one that indicates that the reader is truly part of the community. Lyme is usually called the “great imitator,” a ready warning that doctors often mistake chronic Lyme for something more familiar, something more banal, like fibromyalgia or a conversion disorder. Test results, ILADS warns, are not to be trusted. They encourage patients to work with ILADS-affiliated labs in order to obtain the proper diagnosis, as did Crystal Hefner, who promoted the affiliated lab IgeneX when she announced her chronic Lyme diagnosis on Instagram.
It’s a narrative that’s underpinned by a clear accusation that the medical community is ignoring the suffering of individuals and turning a blind eye to an epidemic. And so ILADS acts as a clearinghouse for chronic Lyme patients and doctors invested in this idea.
ILADS funds and publishes studies, provides medical guidelines for treating chronic Lyme, and watchdogs government agencies. There are other groups, too, like the Lyme Action Network, which produces literature raising awareness of chronic Lyme. Like ILADS, the Lyme Action Network encourages its community to pressure Congress into requiring the Infectious Diseases Society of America (IDSA) to revisit its Lyme-related diagnostic and treatment guidelines.
Persuading IDSA to change its diagnostic guidelines is a core focus of chronic Lyme advocacy groups. ILADS argues that the current diagnostic measures rely too heavily on questionable standards. According to ILADS, “there is no reliable test to determine if someone has contracted Lyme disease or is cured of it.” They argue that the Western blot, a standard blood test, is not sensitive enough to detect and thus finely render the intricacies of Lyme; they advise “Lyme-literate” doctors to read the results of the Western blot differently in order to help diagnosis Lyme. Further, ILADS suggests that Lyme isn’t necessarily the result of a tick bite; according to their research, fewer than 50 percent of patients recall either tick bite or subsequent bulls-eye rash.
Since these groups have found little traction in at either the IDSA or the CDC, they have turned to politicians, who seem to be more willing to listen. In November 2006, Richard Blumenthal, then attorney general of Connecticut, launched an anti-trust investigation of the Infectious Diseases Society of America, arguing that their establishment of guidelines wrongfully allowed insurance companies to deny claims of accepted practices (namely, procedures advocated by ILADS).
When Blumenthal made his announcement, he was accompanied by Debbie Siciliano and Diane Blanchard, founders of a Time for Lyme, a chronic Lyme advocacy group. Blumenthal believed that IDSA was conspiring with insurance companies to purposefully deny chronic Lyme patients coverage for the most common treatment: long-term intravenous antibiotics. In an interview with Spin conducted by now Jezebel editor Julianne Escobedo Shepherd, Kathleen Hanna described wearing a PICC line for nine months for precisely this purpose.
To be clear, there is no evidence that long-term intravenous antibiotics are effective, either for chronic Lyme or PTLDS patients. A 2007 report in the New England Journal of Medicine collected data from three double-blind, placebo-controlled trials:
“[The studies] have shown that there is substantial risk, with little or no benefit, associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for an episode of Lyme disease.”
The report also found that patients with long-term intravenous inserts were at far greater risk for infection and death. And yet Blumenthal, who has long styled himself a crusader of sorts, was swayed by the activists’ point of view. In order to settle the lawsuit, IDSA agreed to the appointment of an independent panel to assess its guidelines. The panel unanimously found no fault with IDSA’s diagnostic and treatment guidelines and quickly reaffirmed them.
Though Blumenthal’s lawsuit had no effect, it confirmed one of the chronic Lyme community’s core beliefs about itself: that they were the victims of a vast conspiracy between untrusted and disliked institutions (the government, insurance companies, and medical organizations). Internet forums dedicated to digitally nurturing that community compare IDSA’s “cover up” with the Tuskegee syphilis experiment, a deeply unethical clinical study undertaken by the U.S. Public Health Service between 1932 and 1972. The Tuskegee experiment tracked the progression of syphilis in some 600 black men in Alabama, denying its subjects access to penicillin, which was known to be the common cure for the infection as early as 1947.
Like Lyme, syphilis is a spirochete—a thin bacteria that coils like an old telephone cord, and uses those coils to propel itself through the body. Beyond that, they have little in common. But the Tuskegee experiment has become a kind of Carrollian looking glass for chronic Lyme: If the government can run horrific experiments in the light of day, then what’s to stop them from denying treatment to those who might suffer from a disease they might be responsible for?
Others see parallels in the HIV/AIDS crisis of the 1980s. Truthout, a far-left website, is particularly fond of pushing that parallel. A 2014 blog post about the dangers of ignoring chronic Lyme:
“AIDS activists struggled through 10 years of fierce battles before the kind of impact they were fighting for was achieved. With the benefit of hindsight, we have the opportunity to learn from our mistakes and avoid putting Lyme patients through the same unnecessary suffering experienced by those with AIDS.”
The comparisons between Chronic Lyme, the Tuskegee experiment and HIV/AIDS denialism are potent and misguided. They speak to an undeniable history of vile government malfeasance and play on a deep distrust of government that crosses political ideologies. Yet they conflate chronic Lyme patients, who are overwhelmingly white women who ostensibly can afford treatment not covered by insurance, with historically disenfranchised groups. There is, perhaps, great irony in demographic groups who’ve historically had the greatest access to health care claiming that a medical system designed for them is still impossibly broken.
Beyond that, the comparison glosses over the real consequence of both syphilis and AIDS: death. Lyme rarely results in death. From 1985 to 2013, the CDC reported seven deaths from Lyme carditis, which occurs when the bacteria enters the heart tissue. It’s a rare (but the most deadly) condition reported in one percent of Lyme patients. Yet many of those who suffer from chronic Lyme say that their day-to-day quality of life is so miserable that they’ve become passive to the thought of death. While accepting an award from the Global Lyme Alliance in 2015, Foster described “the deepest core of hopelessness inside of me.”
Though most chronic Lyme treatments remain uncovered by insurance, five states (California, Massachusetts, Connecticut, New Hampshire, and Rhode Island) have passed laws protecting the licenses of doctors who treat patients with long-term antibiotics and other standard chronic Lyme therapies. In 2015, Blumenthal, now a senator, introduced the Lyme and Tick-Borne Disease Prevention, Education, and Research Act which, if passed, would provide federal funding for research into chronic Lyme.
There is no doubt that Lyme disease is on the rise in the United States. The CDC received reports of over 30,000 cases in 2014 but estimates that the actual number might be ten times higher. ILADS president Daniel Cameron says the estimate is far too low. “In epidemiology, every time you have a surveillance system, you always at least a tenfold underreporting,” Cameron told National Geographic. “There have been studies that show it might be as much as 40 times that,” he added.
Those studies, largely produced by advocacy groups, include cases that have been rejected by the CDC because they “don’t fit the conservative surveillance definition of Lyme disease.” Where activists see a pandemic swept under the rug, medical organizations see a worrying rise of an easily treatable disease (recent studies published in the Canadian Medical Association Journal suggest a correlation between the rise of Lyme with increased population density and climate change).
Further fueling the fire is the recent discovery of a new species of Borrelia that can cause Lyme, the provisionally-named Borrelia mayonii. Though its discoverers point out that Borrelia mayonii is limited to the upper Midwest and, like Borrelia burgdorferi is neutralized by an antibiotic regimen, chronic Lyme groups emphasize the discovery points to a general lack of medical understanding that pervades mainstream Lyme studies.
Despite decades of activism and of pushing back on official scientific narratives, chronic Lyme remained beholden to conspiracy theories, making little inroads in public perception. But celebrity stories of the pain of chronic Lyme and their long journeys towards seeking a cure have brought the disease a kind of respectability that thousands of resolute activists could not.
In the hands of people like Yolanda Foster and Avril Lavigne, the shifting and complicated story of chronic Lyme is distilled into a series of images—of tweets, Instagram photos, and network interviews—that create a consumable and cohesive narrative. “Something becomes real,” Susan Sontag wrote in Regarding the Pain of Others, “when it is photographed.” Celebrities with chronic Lyme render the disease real; they make it visible.
In an interview with Good Morning America, Lavigne cried as she recounted her difficulty getting diagnosed. “I literally became bedridden,” she says breaking into tears. “I was seeing every specialist, like literally the top doctors... so stupid, they would pull up their computers and be like, Chronic Fatigue Syndrome or, ‘Why don’t you try to get out of bed and play the piano, Avril?’ Or, ‘Are you depressed?’ This is what they do to a lot of people with Lyme disease.”
Lavigne never says “chronic Lyme,” instead calling it Lyme. But the signifiers of chronic Lyme are present throughout the interview: the medical establishment’s denial, the turn to doctors who understand Lyme, and lastly the emphasis on diagnosis by symptoms rather than tests. Here, in Lavigne’s interview, is the activists’ language spoken by celebrity. And Lavigne’s status as celebrity acts as a buffer from difficult questions. GMA’s Jesse Palmer nods in sympathy and presents a cultural narrative that’s more appealing and acceptable: the crusading celebrity who has overcome disaster to inspire fans. Lyme Times, a chronic Lyme magazine, tracks and celebrates the national attention brought by celebrities, framing it as an essential component of representation.
Lavigne, like Foster and her children, gives voice to the debilitating pain that chronic Lyme’s patients undoubtedly suffer. Pain is an abstraction, determined by the invisibility of feeling; its expression is fragmented and fractured. More so than words, images seem better suited to the task of rendering pain real. Elaine Scarry wrote in The Body in Pain, “To have great pain is to have certainty, to hear that another person is in pain is to have doubt.”
The chronic Lyme community works assiduously to bridge the gap between their own certainty and their sense of outside doubt. In message boards across social media, people ritualistically chronicle their pain, repeating their struggles to make it through the simple tasks of a day. Many feel that their pain is ignored, misunderstood, and mistreated. Doctors, many say, ignore them. And it’s true that—on sites like Science-Based Medicine, which advocates for a scientific evidence-based approach to understanding diseases—there is a tendency to conflate pain with the disease itself, dismissing both as unreal. This has been modeled even on the Real Housewives. As the realness of chronic Lyme and Foster’s pain has been a central plot point, co-star Lisa Rinna has propagated the theory that Foster is “faking it,” saying that someone suggested to her that Foster could have Munchausen Syndrome. “There’s such ignorance when it comes to invisible disease,” Foster shot back.
“Invisible disease” is one of many phrases chronic Lyme activists use to describe their pain. (Patients with other recognized chronic illnesses also use this phrase.) And this is why the celebrity is so necessary: she renders the invisible disease visible, turning it into images. To watch Lavigne cry or partake in Foster’s endless search for alleviation is a surrender to the immediacy of these images—to a narrative removed from the stale and clinical language of the CDC or IDSA, or the strident commitment of an activist, and reconstituted on a spectacularly real body. As celebrities, Lavigne and Foster exist in a world of visual legibility. To see them is to know them, and they lend that credibility to chronic Lyme.
Perhaps most telling in all of the celebrity Lyme stories is their resistance to being told that their symptoms were psychological manifestations. Lavigne resents being called “crazy,” Hefner reminds her followers that her pain doesn’t stem from her “head,” and Foster too rejected diagnoses of stress and depression. They have rejected the narrative of psychological disorders in favor of infection, something that can be cured with long-term antibiotics, healthy living, and organic foods. That’s a potent part of the chronic Lyme narrative that lives uncomfortably beneath the surface. It’s surely part of the reason women bristle at the suggestion they are crazy: they are so used to hearing it.
Disease still has a hierarchy. Chronic Lyme is a disease narrative that simultaneously provides a language for pain while fulfilling that hierarchy. Narratives, like pain, are not about separating fact and fiction. Rather, they make us understand both subject and object and their relationship between one another. Who controls those narratives is ultimately what remains at stake in the chronic Lyme debate.
Illustration by Sam Woolley