With the possible time-limited exceptions of occasional outbreaks of various infectious diseases, nothing inspires quite so much anxiety as Lyme disease.
Caused by the bacterium Borrelia burgdorferi, the illness is transmitted by the bite of an infected tick. Practicing as a pediatrician in a part of the country where the disease is endemic, I’ve treated a fair share of patients for it. Most have been straightforward cases where the child came in with the characteristic rash. A few have been more complicated and have presented in later stages, including arthritis and meningitis, which required more extensive testing and longer treatment. But in all cases, the appropriate course of antibiotics has been curative.
Yet there’s something about Lyme that makes some parents fear even the possibility of their child being infected, despite there being effective treatment regimens. I have faced demands that children be put on weeks of antibiotics (the treatment for more advanced stages of the disease) after merely being bitten by a tick, in the off chance that it was carrying the disease. The one time I acquiesced to being thusly mau-maued is one of a handful of clinical decisions that make me truly angry with myself in retrospect. The problem of antibiotic resistance is too serious to be doling them out without good reason, and I’m resolved not to do so again. In a similar vein, Lyme is brought up again and again when parents bring in their kids for any number of vague complaints, typically some combination of malaise or fatigue. In almost none of these circumstances does Lyme disease seem likely, but everyone wants testing done anyhow. The results are almost always negative, and when they are equivocal it rarely is an indication of actual illness.
Undergirding all of this is fear of chronic Lyme disease, which the National Institute of Health describes as a condition often “used to describe illness in patients who have no evidence of a current or past infection with B. burgdorferi.” Though some patients experience lingering symptoms that can last weeks after proper treatment (also known as Post-treatment Lyme Disease Syndrome), attributing these complaints to chronic infection and prescribing multiple courses of antibiotics lacks a sound basis in science. As the CDC echoes, 10 to 20 percent of Lyme sufferers experience “fatigue, pain, or joint or muscle aches [after regular treatment]. Although often called ‘chronic Lyme disease,’ this condition is properly known as ‘Post-treatment Lyme Disease Syndrome’ (PTLDS).”
What is for certain is that Lyme disease activists are a passionate bunch. Some time ago, I wrote a blog post in which I had the temerity to question the validity of chronic Lyme diagnoses. For doing so, I was likened in comments to Josef Mengele, a comparison that warmed the cockles of my gay, half-Jewish heart. Earlier this week a group of activists planned a protest outside the headquarters of The New York Times, decrying what they believe to be a lack of media coverage about the illness. Unless I missed the article despite keeping my eyes peeled for it, this action failed to catch the Gray Lady’s attention.
Like all medical conspiracy theories, the notion that the Centers for Disease Control, the Infectious Diseases Society of America [IDSA] and other scientific bodies are colluding to cover up the existence of an insidious illness is a bafflement to me. In 2010, the IDSA held a special review panel to discuss the best way to treat lyme disease. Their report concluded the following:
“‘This was truly an extraordinary review process,” said Carol J. Baker, MD, who chaired the Review Panel and is a pediatric infectious diseases specialist at Baylor College of Medicine, Houston. “The final report includes more than 1000 citations, and after thoughtfully and carefully reviewing myriad materials, the panelists feel confident that advice to physicians treating Lyme disease should remain the same as set forth in the 2006 Lyme disease guidelines.”
The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of “chronic Lyme disease” is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or “superbugs.”
As noted in the Review Panel report, “in the case of Lyme disease, there has yet to be a single high quality clinical study that demonstrates comparable benefit to prolonging antibiotic therapy beyond one month.” The report also noted that “the inherent risks of long-term antibiotic therapy were not justified by clinical benefit.”
It’s hard to imagine infectious diseases specialists are somehow lining their pockets by denying the need to treat patients over and over. However, the story of how Lyme disease first came to be understood offers clues to why the controversy persists.
“It is a perfect story for hysteria and conspiracy if you look at the history,” Dr. Saul Hymes, director of the Pediatric Lyme and Tick-Borne Diseases Center at Stony Brook Children’s Hospital, told The Daily Beast. “The disease was first recognized as an unknown clinical syndrome that many in medicine initially poo-poo’d and didn’t think was a ‘real thing.’ Then when the medical establishment did recognize it, there was not a known cause nor a clear treatment. It took time to identify the bacteria, the proper treatment course, diagnosis, etc. Just like with the early HIV epidemic, all that time a vocal minority was feeling ignored or under-recognized, and they were scared.”
“The problem is,” Dr. Hymes continued, “we now know much more about the disease and how to diagnose and treat it, and the activists around it haven’t caught up with that.”
According to Dr. Paul G. Auwaerter, clinical director of the Division of Infectious Diseases and the Sherrilyn and Ken Fisher Professor of Medicine at Johns Hopkins University School of Medicine, proponents of the chronic Lyme disease diagnosis have created an appearance of ersatz legitimacy for themselves despite the evidence being thin.
“Those who advocate as physicians for chronic Lyme disease have established a reasonable but poorly evidence-based paper trail in journals to support their point of view, offer CME [Continuing Medical Education] programs, and host national meetings,” wrote Dr. Auwaerter on behalf of the IDSA. “This lends the veneer of credibility.”
Both Drs. Hymes and Auwaerter offer sympathetic opinions of patients who have been diagnosed with chronic Lyme, many of whom are genuinely suffering from some other malady falsely assigned that diagnosis, including rheumatologic, allergic, neurologic, or psychiatric illnesses. Taking these symptoms seriously and having an attentive approach to those who come in for concerns about Lyme may help uncover what’s actually wrong.
“I have a less charitable view of the so-called ‘Lyme literate medical physicians’ who diagnose patients with tick-borne illness and treat them long-term,” wrote Dr. Auwaerter. “These physicians are in private practices and often do not accept insurance and charge substantial sums for care and purchase of supplies from their offices.”
“I think a lot of the docs out there who claim to be ‘Lyme specialists’ unfortunately do not have the training or knowledge necessary to back up those claims,” said Dr. Hymes about these physicians. “Hanging out a shingle, taking a course run by a Lyme-related organization, and calling yourself a ‘Lyme-literate doctor’ right out of an internal medicine or pediatrics residency does not mean anything from a certification and quality standpoint, and certainly does not make someone a specialist.”
“Most concerning,” he went on, “is that some of these docs have had cases brought against them by medical boards because of their use of inappropriate therapies and methods, which have resulted in measurable harm to patients. I have personally cared for patients where a real diagnosis was missed because a ‘Lyme-literate doctor’ was so fixated on chronic Lyme they failed to diagnose lupus or another real, treatable inflammatory condition.”
Dr. Auwaerter offered a similar story of a patient whose parents had spent tens of thousands of dollars on supposed Lyme treatment, only to respond promptly when her anxiety disorder was properly diagnosed and managed. While he does credit thinly-qualified Lyme specialists for spending a lot of time with patients, which in and of itself may confer some benefit, that doesn’t change the poor outcomes that lengthy antibiotic or other unfounded remedies can cause.
For physicians who feel pressured to see more patients faster every day, it can be a challenge to attend as closely as we should to those whose complaints take more time to unravel. When we fail to do so, some will turn elsewhere both for the attention and the comfort of a definitive diagnosis. Perceptions that their concerns were not taken seriously can feed into the acrimony that defines the chronic Lyme debate as it currently stands.
Medicine isn’t perfect, as evidenced by the genuine missteps that characterized the early understanding of Lyme disease. Though newer tests can reliably rule it out, a quick, accurate test to differentiate old vs. new infections still isn’t available. Dr. Hymes cites this and other areas of research as a better use of the resources than ongoing protests, and laments the enmity that seems to exist on both sides. Having such resources at my own disposal would be an incredible boon, and would allow both for reassurance and for helping direct attention toward other causes for the complaints that bring patients to my office.
With the CDC reporting 300,000 cases of Lyme disease annually, it is important that providers in endemic areas know how to recognize and treat it in its various forms. But it remains a curable illness, and one that does not require course after course of antibiotics. Angry activists may disagree, but treating suffering patients with medications for a condition they don’t have does nothing to profit anybody but the ones who have built a career out of doing so.