Chronic Lyme Disease: a Case Definition at Last

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Growing epidemic causes prolonged symptoms, says new report from the International Lyme and Associated Diseases Society (ILADS).

This study is a landmark in the recognition of Lyme disease.

For years, Lyme disease patients with chronic symptoms have been denied care because there was no formal recognition of their disease. Now for the first time researchers from the International Lyme and Associated Diseases Society (ILADS) have published a groundbreaking case definition of chronic Lyme disease in the prestigious medical journal Chronic Diseases International.

Lyme disease is a tickborne infection caused by Borrelia burgdorferi, a type of corkscrew-shaped bacteria known as a spirochete (pronounced spiro’keet). The Lyme spirochete is most often transmitted by the bite of a black-legged tick, although person-to-person transmission via intimate contact similar to Zika virus has also been suggested.

Recently the Centers for Disease Control and Prevention (CDC) announced that Lyme disease is much more common than previously thought, with over 300,000 new cases diagnosed each year in the United States. That makes Lyme disease six times more common than HIV/AIDS, 20 times more common than hepatitis C virus infection and 30 times more common than tuberculosis in the U.S. In Europe, the number of new Lyme disease cases has increased to 232,000 per year.

“Lyme disease is a growing worldwide epidemic,” said Melissa Fesler, a coauthor of the report who treats Lyme disease patients at Union Square Medical Associates, a multispecialty medical practice in San Francisco. “More and more patients are suffering from chronic symptoms of Lyme disease, and they cannot get help because until now, chronic Lyme disease did not officially exist.”

The latest report identified patients with chronic Lyme disease based on more than 700 peer-reviewed published articles in the medical literature. The study divided these patients into two groups depending on whether they had been treated previously or not. Characteristic symptoms had to be present for at least six months, and a case definition was established based on the symptom patterns in these persistently infected chronically ill patients.

“This study is a landmark in the recognition of Lyme disease,” said Dr. Peter Mayne, who recently published the first comprehensive study of Lyme disease in Australia. “The authors have given an identity and a voice to patients with chronic Lyme disease whose plight has been officially neglected until now.”

Dr. Raphael Stricker, a coauthor of the report and Past President of ILADS, pointed to the need for better diagnosis and treatment of Lyme disease. “We have formally defined what we are dealing with,” he said, “now it’s time to redouble our efforts to help these miserably sick patients.”

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