Lyme disease sufferer and activist Joshua Cutler talks about the personal and institutional challenges facing chronic Lyme disease sufferers due to the Infectious Diseases Society of America’s failure to update its protocols based on current science.
News reports, public service announcements, and discussions on radio and TV have done quite a lot to make the awareness of Lyme disease more pronounced in the public consciousness. Despite media campaigns about how ticks can transmit the bacteria that causes Lyme disease, the guidelines drafted by the Infectious Diseases Society of America (IDSA) – guidelines that physicians use to detect and treat Lyme — are not entirely accurate. Indeed, false negatives in the tests have led to a proliferation of patients who now suffer from a chronic form of Lyme disease.
One such patient is Joshua Cutler, who was not diagnosed with Lyme until two years after he started having symptoms. Joshua got a tick bite at an outdoor event with his co-workers eight years ago. Knowing about the connection between tick bites and Lyme disease, Cutler went to his doctor to get tested for the disease after getting a debilitating flu that lasted a couple of weeks. The test came back negative. Yet, for the next two years, Cutler suffered other symptoms like memory loss, blackouts, fatigue, low blood pressure coupled with a high heart rate. Doctor after doctor tested him and the tests results came back negative for Lyme disease. Finally, a specialist in Lyme disease was able to make the right diagnosis – by circumventing the guidelines published by the IDSA. While the IDSA approved tests and guidelines used to detect and treat Lyme disease do help many patients, there are other people like Joshua who suffer from a chronic form of Lyme disease – a medical condition the IDSA disputes.
In this “Truthout Interviews” segment, Joshua talks about his efforts to take direct action against the IDSA through “die-ins” to attract media attention and increase public awareness about chronic forms of Lyme disease – which is chronicled by Jessica Bernstein in her piece for Truthout. Through the May Day Project Cutler founded, he hopes to pressure the IDSA to look at the current scientific research into chronic Lyme disease so more effective diagnosis and treatment can help the 300,000 people a year who are affected by the bacteria that causes Lyme disease.