Treating ‘chronic Lyme disease:’ Is it medical fraud?

There are few better examples of health care fraud than the promotion of so called “chronic Lyme disease.”

Defined as “…a crime that involves misrepresenting information, concealing information, or deceiving a person or entity in order to receive benefits, or to make a financial profit,”  this fraud is being perpetrated by a small group of physicians who profiteer by offering unproven treatment at high cost to people worriedly searching for answers for unexplained symptoms.

Given the prevalence of Lyme disease (it is endemic in northeastern and midwestern portions of the United States, and much of northern Europe) this fraudulent practice can produce significant harm. Based on estimates from the Centers for Disease Control and Prevention, there may be approximately 300,000 cases of Lyme disease in this country every year. Two thirds of people infected by the Lyme bacterium, transmitted by Ixodes scapularis, or deer ticks, develop the tell-tale expanding red skin lesion at the site of the bite.  Other typical symptoms may include facial weakness, headache, fever, neck stiffness, and episodic joint swelling.

Commonly used oral antibiotics successfully treat the majority of patients with documented Lyme disease. Ten to 15% of Lyme disease patients may have lingering symptoms, such as headache, fatigue, achiness, and difficulty concentrating, lasting for at least six months, often referred to as post-treatment Lyme disease symptoms.  A number of scientific trials have demonstrated that these symptoms do not respond to additional retreatment at all; others have found that the limited potential benefits of extensive retreatment are outweighed by the risks of this therapy and such therapy is not in the best interest of patients.

Several professional medical organizations, including the Infectious Diseases Society of America, the American College of Rheumatology, and the American Academy of Neurology, are in the process of revising guidelines for the diagnosis and treatment of Lyme disease. As one of the co-authors, I can attest to the careful scientific rigor attached to this multi-year journey. Evidence-based recommendations included appropriate duration of antibiotics, and avoiding long-term antibiotics, especially since over-use of antibiotics can lead to antibiotic resistance, a looming public health crisis, and to alterations in our healthy intestinal bacteria.

By contrast, there is a non-mainstream small number of physicians, who generally had no Lyme specialty training, some of whom are affiliated with ILADS (International Lyme and Associated Disease Society). This society emerged in the 1990’s just as social media was taking off, and was supported by several Lyme “advocacy” groups which publish unfiltered information on-line, found to be highly inaccurate, despite polished web-sites. These websites attracted people who had medically unexplained physical symptoms, such as persistent fatigue or pain, who considered Lyme disease as a possible explanation.  The notion of Lyme disease causing their symptoms was reinforced by the posted but inaccurate lengthy list of symptoms believed to be often attributable to Lyme disease, and the unsubstantiated notion that 50% of patients with Lyme disease test negative by standard laboratories despite many weeks to months of unexplained symptoms.

These advocacy groups have physician referral services, for a small fee, and typically refer people with unexplained symptoms to one of the selected ILADS physicians. According to a recent expose by Molly Fischer in the July 2019 issue of New York Magazine, these physicians may charge exorbitant fees upfront, and hundreds of dollars for frequent follow-up visits. David Whelan, writing in Forbes magazine a dozen years ago, discovered that one such physician in North Carolina, where there was no significant deer tick population at the time, collected $6 million from Blue Cross Blue Shield of North Carolina in one year!

As a pediatric rheumatologist working in Connecticut since 1977, I have been witness to many of these children exposed to unnecessary antibiotics. The stereotypical story I hear is that these physicians ignore accredited laboratory testing, preferring to make a “clinical” diagnosis of Lyme disease, or utilizing “specialty labs” many of which have invented their own criteria for (over) diagnosing Lyme disease.  It is no surprise that some of these labs have generously funded some of these advocacy groups.  Over the years, I have seen children with juvenile rheumatoid arthritis, leukemia, and depression, inappropriately treated by these physicians for Lyme disease, despite negative testing.

Additionally, these Lyme “advocacy” groups have successfully lobbied many state legislatures with two main goals in mind: protect ILADS physicians from prosecution, and extend mandatory insurance coverage for potent long-term oral and intravenous antibiotics. These groups have been bolstered by anti-science celebrities, such as the author Amy Tan, and Real Housewife Yolanda Hadid, feeding into the national anti-science movement.  At the same time, there continues to be an increasing focus on unexplained symptoms, with many patients frustrated by such diagnoses as chronic fatigue syndrome, fibromyalgia, complex regional pain syndrome, mood disorder, or primary pain syndromes.  Modern medicine, unfortunately, does not yet have a well-defined biomedical explanation for these symptoms, exposing a gap in 21st century medicine.  As Fischer noted in New York magazine, “chronic Lyme disease” has been embraced as an explanation, and illness has become an identity.

So what do we say about the physicians who inappropriately diagnose someone with Lyme disease, start prolonged and unnecessary antibiotic therapy, without recognizing inherent risks such as gallbladder disease and death, and make a very handsome living off of this vulnerable population? Is this not deception and misrepresentation for profit? Is this not medical fraud which endangers the patient and the community?   How do we allow these practices to continue?

Lawrence Zemel MD is a Professor of Pediatrics at the University of Connecticut School of Medicine and the Division of Pediatric Rheumatology of the Connecticut Children’s Medical Center. Paul G. Auwaerter MD is the Immediate Past President of the Infectious Diseases Society of America (IDSA) and a Professor of Medicine at Johns Hopkins University School of Medicine.