IStock photo 4550544 ©Jeff Wilkinson

At the age of 49, bestselling author Amy Tan received distressing news: she had Lyme Disease. For months she had suffered from a host of inexplicable physical ailments that all seemed to start with a tiny black dot the size of a pinprick, which grew into a red rash lasting a month. Fever, headaches and stiffness followed, and then tingling and numbness in her feet. She went from specialist to specialist —ten in all—but no one could offer a diagnosis that explained all her symptoms. Finally she was given an MRI and its alarming results: she had fifteen lesions on her brain. She began suffering hallucinations and mental confusion, but it would take one more doctor, this one a specialist in Lyme Disease, to finally tell her what was wrong. By that time two years had passed since the initial, telltale rash.

Lyme Disease gets its name from earliest reported cases in the US, which occurred in 1975 and were clustered around Lyme, Connecticut. Although the chances of a person being diagnosed with Lyme disease are slim, they increased significantly between 2006 and 2007. In 2006 the odds a person would be diagnosed with Lyme Disease in a year were 1 in 15,020. In 2007 those odds grew to 1 in 10,780. With respect to men, the odds went from 1 in 13,380 to 1 in 10,050; for women the shift was even greater—from 1 in 17,790 in 2006 to 1 in 12,120 in 2007. The disease has now been reported in every state, although people living in the Northeast, upper Midwest, and on the Pacific coast are its most frequent victims.

Lyme Disease is a bacterial infection that stems from a tick bite. Like Amy Tan, the vast majority of patients develop a circular rash at the site of the bite. Many experience flu-like symptoms. The good news is that most cases of the disease can be easily cured with a course of antibiotics, especially if the treatment is begun in the early stages of the infection. If left untreated, the infection can spread, causing the more serious symptoms to develop. About 60% of untreated patients will develop arthritis, often with severe swelling and pain. There can be cardiac involvement, and up to 5% of untreated patients may have neurological complaints months or even years after the initial infection.

Tan chronicled her ordeal in her 2003 collection of essays, The Opposite of Fate: A Book of Musings. After a year of treatment, she now considers herself vastly improved. She has been able to resume her work and no long has the spells of panic and anxiety the disease had imposed. Still she fears her late diagnosis may continue to have ramifications for years to come. For those who have never been properly diagnosed—and for a small percentage of people who have received treatment but continue to experience symptoms—the disease can be a life-altering event, although there is sharp disagreement in the medical community as to what constitutes chronic Lyme Disease. A controversial new documentary explores this issue. It’s called, “ Under Our Skin.”