Girl With Tics Bucks Doctors, Blames Lyme Disease


"That syndrome doesn't exist," Schaffner said of "chronic" Lyme disease.

According to the Centers for Disease Control and Prevention, more research is being done on what it calls "post-treatment Lyme disease syndrome" rather than "chronic Lyme disease," because only some symptoms, rather than the bacterium, persist. Lingering symptoms include "fatigue, pain or joint and muscle aches," but they don't persist for more than a few months.

Although Lori's doctor prescribed long-term intravenous antibiotics to be delivered through a semi-permanent opening in her arm called a PICC line, the CDC said studies have found that long-term antibiotics don't work any better than placebos. In fact, a 30-year-old woman, whose case was published in the Oxford Journal Clinical Infectious Diseases, died in 1999 from complications of a 27-month IV antibiotic regimen for an "unsubstantiated diagnosis of chronic Lyme disease."

How Lori's Tics Began

Lori's mother, Tosha Brownell, said early symptoms started when her daughter passed out at a concert in August 2011. Then she passed out a month later at a school dance. After that, she passed out every day, and had to leave school because she became a liability to it, her mother said.

Her mother said she remembered the exact date her daughter started having tics. It was Dec, 2, 2011, when Lori woke up from a nap and didn't seem right.

"She was staring, and could talk and hear us, but she was extremely lethargic," Brownell said. "Then, one arm shot back. And then, a second arm shot back. Then, both arms. Then her body just started flopping like this. She was saying, 'I can't help it. I can't help it.'"

After eight and a half hours in the emergency room, doctors sent Lori home as she was. The next morning, she seemed better, but, her family said, the convulsions and tics returned by the end of the day.

On Dec. 15, Lori passed out and went into a "full blown seizure," her mother said. A few days later, she had another seizure. By Christmas Eve, she started crying, because one of her verbal ticks sounded like "hit me."

Eventually, Brownell realized Lori's friend and fellow softball pitcher Alycia Nicholson had shown similar symptoms a few months before Lori started experiencing them. Then, someone told the Brownells about the 18 other girls with tics.

Frantic to find a cure for Lori, her mother remembered that she'd driven Lori and Alycia through Le Roy on the way to a softball game in Ohio the previous July.

"We ate at Burger King, and we drove down Route 20. It goes right through Le Roy," she said. "That is our connection really. We didn't play a game there. We didn't stop."

Although could not reach Alycia and her family, local news articles suggest she is back to pitching for her high school team.

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