A recent story in the Vineyard Gazette (Draft Guidelines Released for Treatment of Lyme Disease, 9/6/19) presents simplistic and insufficiently researched coverage of a complex and controversial topic. Press coverage of issues of assessment and treatment of tick-borne illnesses on Martha’s Vineyard has been sparse. Local journalists have looked to the Partners system, the Infectious Disease Society of America, and local health care providers for medical information. These sources offer a strikingly limited perspective. They stand in significant contrast to the work of researchers and health care providers who specialize in the most current understandings of tick-borne illness.

The treatment of Lyme disease and other tick-borne illnesses is a medical specialty. These illnesses are complex, and can become chronic and debilitating. There are groups of physicians, researchers and organizations, including the International Lyme and Associated Diseases Society (ILADS,) at the cutting edge of the research and treatment of Lyme and other tick borne illnesses. Just as providers who treat cancer and diabetes undergo extensive, specialized training, providers treating tick-borne illness need the same level of training. The current expression for those specializing is “Lyme literate.” Appreciating the dedication of the Island’s health care community, unfortunately there is not a single Lyme literate health care provider at the Martha’s Vineyard Hospital or any of the Island’s medical clinics.

Vineyard testing resources for Lyme disease are problematic. For many years the Martha’s Vineyard Hospital has used, and continues to use, the two-stage testing protocol developed and recommended by the Infectious Disease Society of America (IDSA.) That testing protocol has a 50-70 per cent accuracy rate. This is repeatedly documented in the research literature. That testing protocol involves antibody based tests. It is well understood in the Lyme literate medical world that antibody testing for tick-borne illness does not currently offer a medically acceptable standard of accuracy. The CDC is clear in its statement that testing for Lyme disease is a research tool only, and not the basis for diagnosis, which is made based on clinical information — a medical and symptom history. Negative test results for Lyme and other co-infections do not provide the basis for ruling out a positive diagnosis.

The Island’s testing resources for tick-borne illness have been insufficient to the task, and have yielded falsely negative results on hundreds if not thousands of infected patients, both Islanders and visitors.

The Infectious Diseases Society of America is a compromised source regarding information about the assessment and treatment of Lyme disease. A number of their physician members involved in research on Lyme and in reviewing and establishing the organization’s guidelines regarding Lyme are plaintiffs in a class action lawsuit filed under the RICO (racketeering) statutes, and making its way through the courts. The organization’s physician members have been accused of colluding with universities and nationally based insurance companies. In exchange for documented large payments from insurance companies, these physicians deliberately falsified and skewed data, and knowingly established testing guidelines that resulted in artificially narrow diagnostic criteria. The diagnostic criteria of the Lyme tests they developed, sold, and personally profited from resulted in a 30-50 per cent rate of false negatives, significantly reducing the numbers of diagnosed Lyme patients and claims the insurance companies had to pay. Given such controversies in the medical and legal arenas, it is vital that the information presented to the community on Lyme be drawn from a variety of credible sources.

There are differences of opinion regarding treatment approaches as well as testing. A recent Gazette article described the prescribing of two doxycycline when an individual discovers a tick bite as an accepted and effective preventive approach. My current understanding, based on consultation with physicians who have specialist training treating Lyme, is that the so-called two-doxy approach is not effective, will not prevent or treat Lyme disease, and may have the unintended consequence of suppressing a bulls eye rash, one reliable diagnostic marker for Lyme infection.

It is important for Islanders and visitors to be aware that there is significant disagreement in the medical community about whether the two-doxy approach is effective. Going forward, community coverage of medical issues related to tick-borne illness needs to be broader, more integrative in scope, and to present multiple perspectives. Tick-borne illnesses constitute a primary public health problem on this Island. The community needs carefully researched and thoughtfully presented information focused not just on prevention, but also on assessment and treatment.

Jane Dreeben is a clinical psychologist with a private practice in Vineyard Haven.