Run/Walk to Create Awareness of Lyme Disease

When Westporter Leah Schechter was in eighth grade, she began to lose the ability of reading comprehension and started having trouble with her memory.

She believes these problems were her initial symptoms of Lyme disease, which she wasn't diagnosed with until junior year of high school.

Lyme is an infectious disease that's surrounded by controversy, which has led a nonprofit organization called Turn the Corner Foundation to work with Schechter and other Westporters to raise awareness of the disease and sponsor fundraisers to benefit Lyme disease research. One such fundraiser to do just that is a walk/run scheduled for Sunday at Sherwood Island State Park, organized by Westport resident Orna Grand who also suffers from the disease.

The U.S. Centers for Disease Control and Prevention says Lyme will cause fever, headache, fatigue and a skin rash — all of which can be treated successfully with a few weeks of antibiotics.

But many Lyme patients and some doctors believe that Lyme can cause much more severe symptoms and despite treatment can affect a patient for years.

The varying views of this disease has led some insurance companies not to cover the medications necessary for Lyme patients who continue to suffer well beyond the few weeks of antibiotics. This issue even led to legislation passed last year. Rep. Kim Fawcett, D-133, sponsored a bill that became law called the Lyme Disease Doctor Patient Protection Act, which allows doctors to treat the disease as they deem best — not necessarily according to what the CDC recommends. 

Schechter and some of her doctors believe she had Lyme disease for at least six or seven years before she was even diagnosed. Now, nearly five years after graduating college, she still suffers symptoms of short term memory loss, constant headaches and intermittent numbness in her legs. She takes about 10 medications a day to both treat her symptoms and ensure her body is getting the right balance of antibiotics and probiotics.

While she says she's much healthier now than she's been in a while, she said becoming healthy could have been an easier road if she only had doctors who believed in the long-term effects of Lyme.

"I've had doctors say, 'I know you can't eat, you're always tired and feel you can't walk but it's not Lyme,'" she said. "I've had other doctors say there's nothing else it can be."

Schechter also went through a number of years of misdiagnosis. 

"I've been tested for MS, chronic fatigue, a brain tumor," she said. "It's hard to know what's the truth and it depends which physicians you want to believe."

For Schechter, one of the most frustrating aspects of Lyme is the difficult road it was to navigate treatment.

"I just think about how many kids are out there and if their parent only knew (more about Lyme), their parents would fight for them," Schechter said, adding that she hopes the film and the April fundraiser help to generate more awareness of Lyme and educate residents about the kind of treatment that does exist.

"I don't think I overcame any great feat," Schechter added. "I think it's unfortunate so many people have similar and even more devastating stories and that's just not OK with me."

To register for the walk/run, or to donate to the effort click here.