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Controversy
There is a controversy surrounding Lyme disease which has prevented many people from being diagnosed with the disease and from being treated appropriately for the disease. The essence of the controversy is persistence of infection versus autoimmunity
One viewpoint espouses that Lyme disease is hard to catch and easy to cure. Its proponents promote short-term antibiotic treatment regimens (a few weeks) that often are not effective for those who have been diagnosed with Lyme disease. The patients sometimes remain symptomatic after that course of treatment. When that happens with other diseases, patients are often given longer courses of antibiotics. However, those holding this viewpoint, including the IDSA (Infectious Diseases Society of America) and insurance companies, have proceeded to take strong actions to prevent Lyme patients from receiving any more antibiotics. Their claim is any remaining symptoms are “autoimmune” in nature, not persistent infection.
The other viewpoint is held by physicians who are treating chronic Lyme patients. They recognize that scientific research shows that even after longer term treatment (more than the few weeks) with antibiotics, some of the Lyme bacteria can survive (persistent infection). They also recognize that although some symptoms can be the result of an autoimmune cascade, that cascade is driven by a small amount of bacteria that remain after treatment. These treating physicians have found that repeated courses of antibiotics and combinations of antibiotics (which attack in different ways) often help patients to become self sufficient and regain functionality in society.
An argument used against long-term treatment is that prolonged antibiotic use develops resistant bacteria. That claim has not been proven. In fact, antibiotic resistance generally develops as a result of improper usage of the antibiotic–not taking enough, thus the admonition to patients to “take all of your antibiotics that are prescribed, do not stop taking them when you feel better.”
Most treating physicians, patients, advocates and many others feel vested interests control Lyme disease and set the limits for what the disease is, how it can be treated, how it can be tested for, and what science can be published on Lyme disease.
This section presents some of the issues, positions, and players in the controversy.
Fall 2006 – 
Protest rally against newly released IDSA Lyme disease guidelines. Held outside of Westchester Medical Center in Valhalla, NY.
Photo by Lynn McCabe
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John Aucott, Director, Johns Hopkins Lyme Disease Research Center and Associate Professor of Medicine, Johns Hopkins University, published a piece in The Conversation providing his insight on the highly controversial topic of chronic Lyme disease.
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The Lyme Disease Association is providing an update regarding Torrey vs. IDSA/Insurers, the federal lawsuit filed by 24 Lyme patients against six members of the Infectious Disease Society of America […]
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The debate over the prevalence of Lyme disease and whether it exists in a chronic form has raged for decades. Kris Newby’s well researched book provides documented evidence that the […]
LDA Doctor Referral System © Terms & Conditions and Guidelines
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About LDA DOCTOR REFERRAL SYSTEM ©
Welcome to the Lyme Disease Association’s LDA Doctor Referral System ©. LDA made updates and enhancements to its prior system and has launched a new site to provide patients with information about doctors, other practitioners, testing labs, and pharmacies that are knowledgeable about chronic Lyme disease and often about many other tick-borne diseases (TBD). Many of the doctors listed are often referred to as Lyme Literate Physicians/Doctors (LLMD). Tens of thousands of patients have successfully used the prior LDA system to locate Lyme and TBD resources.
Terms & Conditions and Guidelines
Because there is a negative political climate surrounding Lyme disease, many LLMDs do not want their names posted outright on the internet. LDA has tried to balance the doctors’ wishes with patients’ need to find a doctor. This new system is a result of that compromise and therefore:
Because of the limited number of physicians treating chronic Lyme disease nationwide, some states, and in some instances, entire regions, may not have any treating physicians who follow flexible treating approaches such as those in the International Lyme & Associated Diseases Society (ILADS) Guidelines, Evidence Assessments and Guideline Recommendations in Lyme Disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease. In the event that the LDA Doctor Referral System © contains no Lyme or TBD resource listings in a given area, the closest possible option(s) will populate based on the location entered and specaialty/ies selected. The LDA appreciates any changes in provider information that you may find and make us aware of so we can investigate.