The classic bulls-eye rash caused by Lyme disease.

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.

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12 Comments

  1. Good job protecting your turf. But don’t worry, Chronic Lyme is a big enough problem that everyone will be making money at it.

  2. Bravo! Please continue this theme for other unproven clinical and laboratory practices that continue to imperil and impoverish the partially informed. The federal government acknowledges it can’t evaluate the clinical validity of lab developed tests, yet certifies them nonetheless. Some labs offer “blood” testing for fibromyalgia (Epic Genetics) as well as reproductive immunology for recurrent miscarriage that are not established or proven valid – yet are shockingly additionally accredited by the College of American Pathologists!! Please raise awareness!!

  3. How dare you, LAWRENCE ZEMEL MD AND PAUL G. AUWAERTER MD, say that people with PROVEN Lyme disease say that we are the ones committing fraud. You are the ones committing fraud by your mishandling of scientific evidence, and then blaming the people that have this disease thrust upon them. I have yet to meet ONE single person that did a single thing to ‘invite’ this disease into their lives – including me.

    I was infected at the age of 7. At the age of 37 I tested CDC positive for not only Lyme disease, but Rocky Mountain Spotted Fever – and I have been sick the entire time. These infections have devastated my life – prevented me from completing college, from having a career, from having a normal family life and I’ve had to deal with massive pain and body dysfunction because of the fraud that certain researchers with financial gains tied to not supporting the research have committed.

    Until you actually admit that the research is correct – and that the CDC is actually starting to finally come around – you should be banned not only from all news article writing, but from all medical establishments. Fraud is fraud, and this is yet another example of YOUR fraud.

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  4. This article is fraudulent. I was bitten by a tick and had the bulleyes rash. I went to the doctor who told me it was nothing. I believed him. I became sicker and sicker and did not know why. After 7 years I was finally diagnosed with Lyme Disease. Thanks to proper treatment I am slowly getting better. Lyme Disease is at epidemic levels. I can’t wait until some of these naysayers get Lyme Disease because some will. They’ll have to eat their words. Lyme Disease is hell and it can kill you. It’s people like this who make it harder for people like me. Shame on you.

  5. Is it medical fraud to leave us in such physical pain with multitudeof other symptoms. With no answers! Laugh at us send us to psychology without being depressed. It’s been 6 years of no answers from doctors. And one heart attack.

    My fellow lyme people are dying.

  6. Ridiculous. The doctors don’t even know when I caught Lyme disease because I did not have the rash, yet I have sharp pains in head, bouts of vertigo, joint pain, extreme fatigue, poor concentration and consistently poor sleep.
    The doctors who refuse to acknowledge that they don’t KNOW about Lyme but yet put forth their bias are the real quacks here.

  7. This story has been going on for 40 plus years and same people writing analysis of doctors treating a documented condition. Why would a doctor spend hours and hours with a patient to make the same amount of money for the patient that takes 5-10 minutes and then a group of doctors who push the notion that these doctors are doing it to make money. I wonder why doctors are looking for accurate tests and medications to treat persister cells and the story goes on and on to treat a condition that this article clearly paints as being a benign infection. I wish I had a better response but frankly I am too tired of this argument to research sources and such.

  8. Having been sued, taken to the carpet by the Attorney General for fraud, and continuing to be sued by those who have become chronically ill, disabled or died from not being properly diagnosed, or being inadequately treated for Lyme & tick borne diseases, these two authors MUST keep pushing the same false yabba dabba do narrative or it would set themselves up for even worse consequences.

  9. I am a Lyme patient that only went to the doctor annually until developed swollen joints, spine pain, numbness, insomnia and constant flu like symptoms. I am a outdoors person and developed severe symptoms 6 weeks later. NOT RESOLVED until I finally had a month oh interveneous antibiotics. Doctors are being paid by insurance companies. Insurance companies do not want to pay for the cost of adequate treatment. Insurance companies harass doctors who do prescribe proper treatment. These doctors have no choice but to do self pay. Many doctors have had their licenses threatened by insurance companies, It is such a tragedy. Lyme bacteria has been found in the brains of Lyme patients after treatment. Many infectious disease require long term treatment. Lyme has protein bio-films that resist penetration by current antibiotics. That is why both John Hopkins University, Northeastern and Boston University are researching how to develop an antibiotic eradicated Lyme bacteria in all its forms.

  10. Enlihtened physicians treat chronic Lyme as an autoimmune disease, just like other autoimmune diseases that have wide variety of debilitating symtoms. They don’t use prolonged antibiotics, as quoted above. Time for the authors to give up knocking down straw men.

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