I was recently diagnosed with chronic Lyme disease, the most commonly reported vector-borne illness in America, according to the Centers for Disease Control and Prevention. An estimated 30,000 people will be diagnosed in the next year, a thousand in Maine alone. Thousands will remain misdiagnosed or undiagnosed.

The only CDC-recommended tests for Lyme detection fail about 50 percent of the time, according to a study published by Dr. Raphael Stricker in 2010. All of the diagnostic testing I underwent showed negative.

Untreated or undertreated Lyme results in chronic Lyme, a condition characterized by the development of severe, difficult-to-resolve symptoms. The CDC’s preferential treatment of the outdated and inaccurate Infectious Disease Society of America guidelines for treating Lyme supports a government narrative that chronic Lyme does not exist. Thus, insurance companies are not required to cover treatment costs, which can total as much as $70,000. The six months I spent obtaining a diagnosis and initiating treatment generated about $4,000 in out-of-pocket expenses.

The majority of Lyme patients are misdiagnosed because of the limited information and training acquired by general physicians. Incorrect diagnoses generate excess costs, which contribute to Lyme’s impact on the health care system – between $712 million and $1.3 billion every year.

My symptoms have made it impossible for me to function as a musician, artist and student; I won’t be able to return to college in the fall. The lack of recognition for this disease cannot continue.

The CDC and the Infectious Disease Society of America have failed to control Lyme. With new laws threatening to deny coverage for pre-existing conditions, now is the time to fight back. Legislation must be passed to legally recognize chronic Lyme and its co- infections. Funding for research must be increased along with pressure for improved diagnostics with high accuracy rates and increased education for physicians regarding symptoms and treatment options.

Megan Nowak


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