As such, many patients and their families have shied away from the media in recent months and appear to have even changed their phone numbers. When ABCNews.com tried to reach them, none of their numbers worked.
Lori, on the other hand, has made 38 YouTube videos and participated in three documentaries. She said she wants to let the medical community, including the CDC, know that it's wrong about Lyme disease.
Finding a Doctor Who Believed Her
Lori learned about Lyme disease because a woman saw her story and wrote her a letter, complete with pamphlets and Lyme information.
But finding a doctor to diagnose her wasn't easy. Ultimately, Lori's mom had to drive her three hours to Mount Kisco, N.Y.
"I realized it's hard to get people to listen to and believe in it," Lori said. "I found out not many people or doctors do."
Although Lori had tested negative for Lyme disease in 2009, two years before her tics started, Dr. Daniel Cameron said he diagnosed her with it in 2012 based on blood tests and her medical history, which included a swollen knee, the year she was tested for Lyme. Cameron said Lori probably had a false negative test in 2009, and that the bacterium had smoldered and gotten worse over time, causing neurological symptoms.
He prescribed long-term intravenous antibiotics to kill what he said were the lingering bacterium that causes Lyme disease.
"There's uncertainty when one has been sick for three years as to whether we can resolve remaining neurologic symptoms," he said. "It would be nice to get her even better than this so she could be unencumbered by her illness."
Insurance Won't Pay
Because chronic Lyme disease and long-term intravenous antibiotic treatments aren't accepted as a diagnosis or treatment by the general medical community, Lori's mother said most of her insurance claims have been turned down. She said her insurance company denied her $1,531.60 a week, and she owed tens of thousands of dollars in medical expenses.
One clinic stopped giving Lori medicine because it said its infectious disease specialist had to examine Lori for it to continue treatment, Brownell said. The clinic, according to Brownell, said Cameron's diagnosis wasn't sufficient.
Instead of having her retested by the clinic's doctor and continuing treatment there, Lori and her mother decided to find another clinic that would fill Lori's prescription.
"She's seen enough doctors," Brownell said. "We know what she needs."
Brownell said she fills out endless paperwork to get Lori treatment, and she usually has to do it all over again every 60 days.
Through it all, Lori remains positive. She has yet to return to school, but she hopes to eventually graduate from high school, attend college and become a veterinarian.
In Lori's most recent YouTube video, she seems more in control of her body, with the exception of a hiccupping noise she makes as her diaphragm spasms and her nostrils momentarily shrink. She demonstrates how to hook herself up to an intravenous antibiotic drip.
"From looking at myself a year ago to now, it's amazing what the treatment has done for me," Lori said. "I know if I keep fighting and pushing forward, I'm not going to be like this forever."