In the twenty-first century, mobilization and protest often take place virtually, in that technology unites people with like ideas and like causes. The rapid, dramatic shift to a digital world has influenced how and where we work, how we spend our leisure time, and how we transform thought into action. Consider the Arab Spring movement in 2011: one man’s self-immolation in December 2010 in response to oppression in Tunisia brought about protests that quickly spread through neighboring countries such as Egypt, Syria, and Libya. Technology like Facebook, Twitter, and BlackBerry Messenger helped protesters organize, helped the movements spread their message, and helped the outside world gauge what was going on. Stateside, the Occupy Wall Street and other Occupy spin-off protest movements in 2011 relied heavily on social media platforms to mobilize, voice their agendas, and garner support.
While digital advocacy has not turned virtual collaboration into in-person protest in the dramatic ways the Arab Spring examples show, it has still had an enormous influence on changing how we find, use, and spread information. For example, 80 percent of Internet users—and about three-quarters of U.S. adults use the Internet—have searched online for information on any of fifteen health topics, such as a specific disease or a treatment; and 34 percent of Internet users have utilized blogs, websites, and online news groups to read commentary about other people’s health experiences.5 As current-day controversies over diseases such as chronic Lyme illustrate, we’ve come a long way from the mid-twentieth-century hubris over medical science’s capabilities. Instead of believing medicine and science can and will conquer most of what ails us, we’re questioning it—and in turn, patients and advocates face increasing scrutiny, too. Now, virtual collaboration and information-sharing offer patients and patient-advocacy groups many benefits, but the flip side of this mobilization comes with a condition: the message must be accurate, and the information reliable.
Us Versus Them: Science as the Arbiter
For those living with chronic Lyme disease, the growth of the virtual world happened at a particularly fortuitous time. The short version of Lyme disease’s incredibly complex story—truly, it is the stuff of long, extensively researched books in its own right—is that it often pits evidence-based medicine and quantifiable data against clinical observations and patient histories.
At least that is one external perspective. For those living within the quagmire that is chronic Lyme disease, it is a story of suffering and dismissal versus conflict of interest and corporate gain. Many physicians and the Infectious Diseases Society of America (IDSA) believe Lyme is primarily a short-term infectious disease that is treatable with a dose of antibiotics, and that long-term IV antibiotic treatment poses unnecessary risks and is not warranted. In fact, their position maintains that in more than twenty years of research, no convincing evidence exists to support the existence of chronic Lyme, and there is a lack of peer-reviewed literature supporting the opinion that the benefits of long-term antibiotics outweigh the risks.6
In 2007, the New England Journal of Medicine (NEJM) published a critical appraisal of chronic Lyme disease in which the authors wrote that “Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections … the assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi [the Lyme spirochete] is not supported by carefully controlled laboratory studies or by controlled treatment trials.”7 The researchers and professional and public health organizations who do not hold with the chronic Lyme diagnosis do acknowledge what is called post-Lyme syndrome, which refers to longer-term damage to tissue and residual inflammation but does not indicate an actual ongoing infection.8
Dr. Allen Steere, one of the NEJM review’s coauthors, is a lightning rod in the Lyme saga. He first identified the disease and traced its origin to deer ticks in the 1970s. A feature article in the New York Times Magazine of June 17, 2001, called “Stalking Dr. Steere over Lyme Disease” found that between 1982 and 1992, nearly 50,000 cases of Lyme were reported; due to questions about the reliability of blood tests and the crossover that symptoms of Lyme share with other conditions, some patient advocacy groups put this number much, much higher.9 Fifteen years into the Lyme odyssey, Steere observed a troubling trend: patients who believed they had chronic Lyme, a persistent infection impervious to most treatments—and different from the late-term effects, such as tissue damage or inflammation, of Lyme disease.10 He suspected that many of the patients referred to his clinic never had Lyme in the first place and likely had misdiagnosed conditions like fibromyalgia. Steere’s prominence as a definitive expert on Lyme makes him all the more controversial to the patients who believe his stance on it continues to cost them their health, possibly even their lives.
On the other side are the patients and the physicians who argue that left untreated, Lyme can become a chronic condition, one that like syphilis, which shares the same spiral shape as the bacteria that cause Lyme, can result in lasting neurological damage. The parameters of the blood tests used to diagnose Lyme disease are narrow, and, as many argue, leave out certain patients who suffer from the disease. For these patients, treatment with long-term antibiotics, often intravenously, is the only option that seems to make a difference in their symptoms. Guidelines published by the Centers for Disease Control do not take into account the stories of patients whose cases went undiagnosed for too long, or cases that are complicated by co-infections, and many patients and critics feel there are worrisome conflicts of interest in funding at play among those tasked with defining these guidelines.
The medical community is by no means evenly split on the issue. Defenders of chronic Lyme who treat patients long-term are the outliers who are often under attack. Many doctors who see the need for long-term antibiotic therapy to treat Lyme disease are afraid to prescribe it for fear they will lose their licenses, since they would be going against CDC guidelines. Not only does this dispute make it difficult for patients to get diagnosed and treated, but it makes getting insurance to cover the treatment challenging, too.
“I’m lucky because I live in the most endemic area for Lyme in the country, which means that the most Lyme-literate physicians are in or around this area … These doctors have put their careers on the line to ensure proper treatment for their patients,” Jennifer Crystal says. The phrase “Lyme-literate” is a sort of semantic carrying card to membership in the chronic Lyme population. Lyme-literate physicians are not merely educated in the various manifestations; they are recognized by patients as those who are willing to buck convention and provide long-term treatment for chronic Lyme.
College student and chronic Lyme patient Britta Bloomquist frames the debate by virtue of two poles, the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society (ILADS). The IDSA wrote the original guidelines Bloomquist and many others find problematic, while the ILADS is researching and hoping to change those guidelines. Patients skeptical of the IDSA’s intent in defining and treating chronic Lyme were given fodder in 2006, when Connecticut attorney general Richard Blumenthal launched an antitrust investigation into the IDSA’s guideline process. He feared that conflicts of interest between the society members tasked with drafting them and the pharmaceutical and insurance companies—who had much at stake in just how narrow the treatment guidelines were—posed a significant problem. The investigation’s report, issued in 2008, found serious flaws in the IDSA panel’s process, including a failure to conduct conflict-of-interest reviews before appointing physicians to the panel; failure to follow its own protocols by allowing a chairman with a known bias against chronic Lyme to hand-pick panelists without scrutiny or review by an oversight committee; and failure to include physicians with dissenting views on the panel by telling them it was full, despite expanding it in later months, among other offenses.11 A review panel put in place after the attorney general’s report ultimately continued recommending against long-term anti
biotic treatment, allowing insurers to deny coverage, although critics still maintain there are problems with the review process itself.
Bloomquist is no stranger to the political fallout of IDSA guidelines when it comes to treatment. In January 2010, she had taken three months of oral antibiotics to treat chronic Lyme, which had gone undiagnosed for several years. Like many patients treated for chronic Lyme, when the oral antibiotics didn’t set her symptoms at bay, she had a PICC line (a peripherally inserted central catheter) inserted and did a month of IV Rocephin, one of the go-to drugs for long-term antibiotic treatment of Lyme.
“After a month, my doctor removed my PICC line because as I later found out, his hospital and clinic that he worked under was getting wary of the controversial treatment. After three days of no treatment, I could barely walk,” she says. The risk of infection that PICC lines pose, as well as the potential damage to the body that high-dose, long-term antibiotics can cause, are primary reasons many physicians stand firm against this course of treatment. For the patients whose blood work does not show evidence of Lyme infection but whose clinical symptoms and narratives correspond, the risk-benefit analysis for such an intensive treatment is even steeper.
Crystal describes a similarly frustrating two-year battle to access Social Security disability benefits. The Department of Social Security didn’t want to rely on her physician’s reports and sent her to one of their own specialists, one who did not believe chronic Lyme existed.
“After a fifteen-minute exam in which I was hardly asked a single question about my medical history, this doctor deemed me not to have Lyme—and therefore able to work. The appeal process was a long and maddening round of getting more doctors’ records and filing endless paperwork (which, ironically, I did not have the energy or mental capacity to do),” she says. She finally saw a lawyer and went before a judge who had some working knowledge of the complexity of Lyme disease and ultimately awarded her disability benefits.
“If the political controversy over Lyme didn’t exist—and if more people were Lyme literate—I would not have had to fight such a ridiculous uphill battle. It’s hard enough being sick; having to fight for validation, and for your rights, is like pouring salt in the wound,” she says.
In Cure Unknown: Inside the Lyme Epidemic, veteran science writer and Lyme patient Pamela Weintraub observed that the more people she interviewed, the more obvious it became that the distance between the scientific studies and the experiences of patients was “vast.” She continues, “Peer-reviewed articles dismissing the Lyme patients’ mental impairment as ‘mild,’ for example, did not remotely capture the experience of having a brain infection—the angst of falling behind in school or feeling perpetually foggy or confused … Memory loss calibrated in percentage points was presented as mere annoyance in the studies, but it translated, in patients’ lives, to hours spent navigating local highways, lost in their neighborhoods, or forgetting a frying pan on the stove.”12 Weintraub’s examples illustrate just how significant the subjective, lived experiences of patients are when evaluating objective measures of disease. When those experiences are multiplied over and over as they are shared on List-servs, on patient forums, and through social media sites, they become even more powerful.
It is useful to view chronic Lyme disease in the context of one of its contemporaries, chronic fatigue syndrome. Like chronic fatigue syndrome, Lyme disease first emerged in the shadow of the AIDS epidemic in the 1980s, and like chronic fatigue syndrome and fibromyalgia, it tended to appear often in middle- and upper-class Americans—in this case, those who sought refuge in leafy suburban subdivisions. Weintraub and her family entered the labyrinth of Lyme when they left New York City for the rarified green sanctuary of Chappaqua, New York, where the deer that carried the ticks responsible for Lyme were frequent visitors. In terms of gender, Lyme is more of an equal-opportunity disease than other conditions. Weintraub’s own husband and two sons were eventually diagnosed with Lyme disease, but only after years of struggling in school and the workplace without a clear answer that explained their puzzling malaise.
Like the many patients with chronic fatigue and fibromyalgia around them, patients with untreated, undiagnosed Lyme are often told their complaints are mental or emotional, that if they got more rest or experienced less stress or learned to deal with their confusing array of symptoms, they just might feel better, too. Jennifer Crystal can relate. As the summer of 1997 rolled into autumn, her symptoms progressed beyond the mysterious onset of hypoglycemia. Almost immediately upon starting school, she developed flu-like symptoms. She had trouble walking and concentrating, she ran fevers, and she experienced constant muscle aches. Staff at her campus health center didn’t believe her symptoms were real and began treating her as an anxious hypochondriac. One nurse even whispered that she might want to seek counseling. No one thought to look for Lyme, and routine blood tests showed nothing amiss.
“I was told that I was simply run down and stressed, maladies every college student must learn to deal with,” she says.
Over the next few years, Crystal’s symptoms waxed and waned. Every few months, or even weeks, she would get hit with debilitating flu-like symptoms and seemed to catch seasonal infections more often than her peers. After many trips to the hospital and the student health center, the consensus remained that she was stressed, run-down, or depressed. She doesn’t dispute the stress or depression, but she insists both were a result of being so sick all the time—not the other way around.
After she graduated and started a teaching job in Colorado, the fluctuations continued, and more symptoms emerged: migraines, systemic hives, intense itch, shaky hands, exhaustion, racing thoughts, vivid nightmares, asthma; even her extremities burned. By age twenty-five, it was clear she could not hold down her job and she was forced to move in with her parents in her home state of Connecticut—the ground zero of the Lyme epidemic. Finally, the Lyme specialist she saw at her naturopath’s suggestion listened to her entire medical history and looked at all of her symptoms as part of a whole problem, something no one had done before. Based on positive lab tests and a clinical exam, she was diagnosed with chronic persistent neurological Lyme disease, Ehrlichiosis, and Babesiosis. The last two are parasitic infections that are also transmitted through a tick bite.
“All of the strange symptoms I’d experienced over the years—from hypoglycemia to shakiness to hives to sleep disturbances—are telltale signs of one or more of these diseases. The doctor traced everything back to that day at camp in 1997. I remember a strange rash on my arm that summer—not a bull’s-eye, but a series of red dots. I’d thought it was just from my sleeping bag or something … But looking back at it now, it seems highly probable that I was bitten by a tick that summer. My tests showed long-term and short-term exposure, which means that I may have also been reinfected at another point. Eight years later, in January 2005, I finally had my answer,” she says.
Not surprisingly, the label Lyme disease bestowed to her was both a blessing and a curse.
“What some people don’t understand is that many cases of Lyme, such as mine, are left undiagnosed or untreated for far too long. Over time, the spirochetes replicate and invade every system of the body. Once the bacteria enter the brain and neurological symptoms develop, it becomes next to impossible to cure someone of Lyme … This is why early diagnosis and treatment are absolutely critical in beating Lyme disease. I envy people who find a bull’s-eye rash and get right to a doctor, because I know they will take a few weeks’ worth of antibiotics and be fine,” she explains.
In the end, her experiences are another reminder that differences in symptoms and diagnoses are important when it comes to treatment, but when it comes to understanding the overall implications of ongoing illness, the differences aren’t nearly as striking as the similarities.
“I asked myself, what’s my purpose now? How can I lead a productive life if I’m too sick to work or make contributions to society? Over time, I learned that meaningful contribution
s can be made even from bed (especially as a writer); that purpose goes much deeper than a job; that it’s possible to create a new normal for oneself. My life isn’t normal by most people’s standards, but it works for me. I’m living now, not just surviving, and that’s a blessing,” Crystal says.
Individual Users, Collective Action: Patients and Health 2.0
Most of us have been there: we go to a doctor’s office, hear a particular diagnosis, treatment, or medication, and as soon as we get a chance, we go home and look it up online. Soon, if we’re lucky enough to get a diagnosis and spend some time going through the search results, we find stories of other patients whose experiences sound awfully similar to our own. Maybe we just like the comfort of knowing there are others like us out there, or maybe we locate information that we find useful in our own treatment plans or bring to discuss with our physicians. When Jennifer Crystal was finally diagnosed, she was no different. She turned to other patients living with the same diagnoses and symptoms for support, advice, and validation, and the online resources she consulted assured her that her physicians’ practices were on par with those of other Lyme-literate physicians.
Doctors, nurses, and other health care professionals may still represent the first stop for people who have questions about conditions or symptoms, but research shows an increasing number of Americans turn to online resources when it comes to matters of health and wellness.13 The Pew Research Center’s Internet and American Life Project reported that 66 percent of people who report no health conditions use the Internet as a source of health information. In comparison, 51 percent of those living with chronic disease turn to the Internet for answers and information. Lack of digital access is the primary reason for the gap—not, as the report notes, lack of interest. In fact, when demographic variables are controlled, Internet users with chronic health conditions are slightly more likely to search online for health information than are other users.14 Among the patients I’ve spoken to and connected with over years of blogging about chronic illness, I’ve seen lack of digital access take on many forms: some cannot afford regular access to a computer or dependable Internet. But for others, cutting through the brain fog to concentrate on online tasks is challenging, sitting upright or finding comfortable positions to type can be difficult, and working through intense pain or fatigue to focus is a regular hurdle.
In the Kingdom of the Sick: A Social History of Chronic Illness in America Page 16