Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment

Sue Gray, 59, basks in the sunlight in her former kitchen in Connecticut, shortly before moving into her mother's house. Sue has lived with Lyme symptoms since 1994. The pain, depression, and anxiety she experiences prevent her from working and have led her to feel unsupported, misunderstood, and isolated for decades. The strain of her illness also contributed to the end of her two marriages."If not for my , I don’t know where I’d be," she says.

Most people who are treated with a two- to four-week course of antibiotics get better. But the U.S. Centers for Disease Control and Prevention , who develop what is officially known as post-treatment Lyme disease syndrome , a lingering condition that comes with symptoms like profound fatigue, body aches, and cognitive impairment. Aput the number a little higher, finding that about 14% of patients properly treated for Lyme experienced prolonged symptoms.

For most of his life, Cody Mode, 30, has lived with Lyme disease symptoms including food and heat sensitivities, insomnia, compulsive behavior, depression, and suicidal thoughts. In the past, he turned to drugs and alcohol to numb the pain, but he gave up those coping mechanisms when his oldest child was born. Today, Mode lives with his wife, Rose, and five children in a small Maine town near the Canadian border, where it can be difficult to find adequate Lyme treatment.

“I have spent the last 15 years trying to prove that is real,” Aucott says. Only when the medical and scientific establishments believe that it is, he says, will anyone be willing to fund major treatment trials. It’s true that researchers don’t know what causes post-Lyme symptoms. It’s possible that bacterial fragments stubbornly linger in the body, either causing ongoing infection or interacting with other pathogens, Tal says. Or, she says, it's possible that the bacterium causes the immune system to attack itself, or triggers another kind of abnormal immune response that outlasts the initial infection.

Shivani's journey with Lyme disease started long before she was aware of it. Looking back, she believes she has been grappling with illness and disability for most of her life, likely linked to Lyme disease contracted while growing up on Long Island.

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