It is true that there is a lot of controversy surrounding Lyme disease. Contract a tick-borne illness, particularly Lyme disease, and you may land in a cesspool of discord which could affect you profoundly.
How did a bacterial infection turn into one of the the most contentious and virulent medico-political battles in medical history? The history behind the “Lyme Wars” features some eye-opening twists.
In the mid 1970’s, a young rheumatology fellow at Yale, Dr. Allen Steere, traveled to Old Lyme, Connecticut, to study a population of young patients suffering a wide variety of symptoms, such as fatigue, nausea, headaches, joint pain, neurological and cardiac abnormalities and a host of other symptoms common to any number of diseases. He needed at least one clear and consistent symptom common to all patients so he could be assured that all patients in his study suffered with the same ailment.
In 1982, Willie Burgdorfer, a medical entomologist with the National Institutes of Health, identified the bacterial spirochete responsible for the disease, Borrelia burgdorferi. As a bacterial infection, Lyme disease came under the purview of the Infectious Diseases Society of America (IDSA) and the Infectious Disease Unit of the Centers for Disease Control and Prevention, which, with the National Institutes of Health used Steere’s early work as the foundation for continued research and confirmation of the disease definition. Over subsequent decades, more research was added to the body of information — all of which was based on the fundamental requirement that a rash, or a little later, a positive blood test, using an unreliable test, be present.
While Steere’s original intentions were good, his research methods were fatally flawed. Now, 40 years later and with the benefit of data gathered from thousands of Lyme patients, we now know that the bull’s-eye rash is generally indicative of acute, or early, Lyme disease. Because the rash was the qualifying factor for admission to the study, Steere only studied people with early disease. The disease construct, definition and treatment protocol were built on the early disease model only. People with advanced disease were never included in the research, never tested, never recognized. This oversight defines the basis of the wide divide between the two Lyme “camps.” The new disease attracted other doctors seeking to become “experts” in this new field, many staking their reputations and careers on Steere’s early research, over time losing sight or memory or interest in the flaw infecting the base of the definition.
We now know that patients suffering from later stage disease exhibit symptoms exactly like the patients in Old Lyme who were excluded from the study. Had those people been included in the study in 1975, the foundational premises of Lyme disease would have been significantly more robust, and in all likelihood, the understanding of the disease would be much broader. The IDSA carried the design flaw into their work, and the CDC, which relies upon information from the IDSA, picked up the flaw, cementing it into their internationally amplified disease construct. Medical professionals learn only about the acute disease construct. An entire medical culture denying the rest of the Lyme patient population has created a land of Lyme zombies — people who are desperately sick, yet denied recognition, treatment, insurance and care. Many are persecuted for being sick.
Unfortunately, acute Lyme disease represents just the tip of the Lyme iceberg and, even more unfortunately, the IDSA and CDC think this small piece represents the entire iceberg, and they have it under control. Nothing could be further from the truth.
How we got to this point is explained by a close examination of the original research. The real mystery is why so many physicians — intelligent, well-educated and well-meaning people who have devoted their lives to helping the infirm — go along with what some “opinion leaders” with self-serving interests dictate, refusing to conduct their own research into this incredible conundrum, sacrificing the sick and desperate to an unsupportable, antiquated and very flawed disease construct.
— Christina T. Fisk, President, Lyme Action Network
This essay was written at the request of the Post Star Newspaper and published July 16, 2017.