March 3, 2017

Addressing the Ongoing Controversy Facing Lyme Doctors

March 3, 2017

Addressing the Ongoing Controversy Facing Lyme Doctors

In the January 15, 2017 issue of the The New York Times Sunday Magazine, a column called “The Ethicist” ran an item under the headline “What to do about a physician who may be a quack.” In it, columnist Kwame Anthony Appiah, who teaches philosophy at New York University, answers a question from an anonymous letter writer who believes an Ivy League college-educated, New Jersey Lyme doctor is a “quack.” While GLA does not typically comment on the practice of individual physicians, and does not know the NJ physician the author attacked, the allegations of the author were so unfair and inaccurate that GLA Chairman Robert Kobre felt compelled to respond.

 

Dear Mr. Appiah:

I was disturbed to read the letter in your January 15th column from someone who claims to be a Ph.D. scientist. The person writes that they worked for a company that researched Lyme disease—and this, therefore, qualifies them to be a Lyme disease “expert.” Yet their commentary proves otherwise.

Global Lyme Alliance's Second Annual "United For A Lyme-Free World" Gala
Robert Kobre, Chairman, GLA, Uniting for a Lyme-free World Gala, 2016

As Chairman of the Global Lyme Alliance, the nation’s largest 501 ©(3) dedicated to Lyme disease research and education, my team and I work with and support some of the world’s leading researchers focused on Lyme disease. A true Lyme disease expert would know that a physician does not have a definitive set of tools in which to diagnose Lyme, like one does for other illnesses, such as cancer.

The “expert” complains this Ivy League educated doctor is not trained in Lyme disease. How does he/she know? True, most doctors are not trained in the complexities of Lyme disease; it is not taught as a separate course in medical school and most doctors do not know enough about the disease to even consider it. However, some physicians make the effort to self-educate through Continuing Medical Education (CME) classes, like those offered by GLA. There is also ample published research and regular conferences on Lyme disease available to physicians.

One of GLA’s goals is to educate the medical community and the public about the prevalence, prevention, symptoms, and risks of Lyme disease. Over the last 10 years, GLA has supported many of the breakthroughs in Lyme disease research and we fund researchers at the world’s leading medical institutions who have dedicated Lyme disease efforts. All of our many projects have been published in peer-reviewed medical journals. We have invested millions of dollars toward various types of diagnostic tests and treatments and we have a world class Scientific Advisory Board which screens all research grants.  We have made significant progress.  Thanks to our work we know that the Lyme disease bacteria is unique and complex. Therefore the oversimplification of this “expert” is disingenuous.  Without biomarkers and a test, how would this “Lyme scientist” who failed to commercialize a diagnostic tool or cure at his last job, know if a doctor is over or under diagnosing Lyme disease? He/she wouldn’t.

Unless a patient walks into a doctor’s office with a new rash (which doesn’t always appear on Lyme disease patients), is holding the infected tick (most people don’t have the tick or can’t recall the tick bite), and can show the bite zone, a physician must rely on a range of criteria to make a diagnosis. In New Jersey, a Lyme-endemic state, a physician can only rely on clinical judgment, understanding of the local tick environment and, if lucky, a positive blood test. However, the current Lyme diagnostic only tests positive approximately 50% of the time.

By anonymously attacking a physician trying to treat patients, the letter writer is in essence attacking all of us in the Lyme disease community. Instead of attacking a physician who has no reliable blood test, scan, or culture to work with, and is trying to help very sick people who may have the fastest spreading vector-borne disease in the US, I would suggest a better use of time for your writer would be to take a class offered by GLA and then submit a research proposal to us which our real experts will review for funding.

Lastly, this “expert” complains that this doctor orders treatments which are not covered by insurance.  A true expert would know that GLA-published research has shown that the standard treatment covered by insurance for early Lyme disease still does not eradicate the disease in up to 20% of patients. We do not know if the patient cohort of this doctor are early in the disease when it’s easier to treat or late stage when standard treatments have a low yield for success.

GLA does not opine on individual physicians’ practices.  However, we cannot stand idly by when a person proclaims to be an expert, when they are not, and in so doing may harm patients by disrupting care on false pretenses. If this expert would help us find effective treatments that insurance companies would cover, that would be a far better use of his or her time and help a lot more people.

Sincerely,

Robert Kobre
Chairman, GLA

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