May 13, 2013— -- On Dec. 19, 2011, Lori Brownell, who was 17 at the time, shot a YouTube video of herself as she talked about the tics she'd developed weeks earlier. She twitched her body, fluttered her fingers and made noises in her throat as she described her fainting and seizing episodes.
"When I do this, there's this weird feeling that goes up and down my spinal column," she explained to the camera shortly before going into a fit of clapping.
"If anyone wants to talk about this or if anyone's starting it, I'll be willing to talk," she said, signing off on the video that would eventually get more than 250,000 hits.
She would soon make national news.
Within a few months, 18 high school girls and one boy in western New York came down with the same Tourette's syndrome-like symptoms as Lori's, sparking a national media frenzy and a medical mystery. Although Lori lives in Corinth, N.Y., she became lumped in with the majority of the tic-ing girls 250 miles away in Le Roy, because she'd driven through the town with a friend on her way to a softball game in Ohio.
As the Le Roy girls appeared on talk shows, one doctor suggested they had Pandas, a pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. Another doctor suggested the tics were caused by the HPV vaccine Gardasil. Soon, famed environmental activist Erin Brockovich said she suspected groundwater contamination from a 40-year-old chemical spill caused the tics.
One by one, the theories were dismissed.
Fourteen of the 19 tic-ing girls sought treatment at Dent Neurologic Institute, where they were eventually diagnosed with mass psychogenic illness, a rare form of conversion disorder in which an emotional response to stress can manifest in physical symptoms, such as tics. They have all since recovered, their doctor, Dr. Jennifer McVige, told ABCNews.com.
But not Lori. Lori's mother did not want to send her daughter to Dent because it had diagnosed the other girls with conversion disorder – a diagnosis experts said patients often greet with denial.
Instead, Lori and her mother said they believe "chronic" Lyme disease, a controversial diagnosis, caused Lori's tics and may even have caused the Le Roy girls' tics, too. But most doctors -- and insurance providers -- said there's no such thing as "chronic" Lyme disease, and that Lyme disease doesn't cause Tourette's syndrome-like tics.
"The short answer is you won't find that in medical texts," said Dr. William Schaffner, a former president of the National Foundation for Infectious Diseases. "Since Lyme disease has been studied with enormous care and thoroughness, the literature on Lyme first described 35 or 40 years ago now fills half a room. Its clinical manifestations are extremely well known. I think this is an unlikely cause of this single girl's illness."
Still, Lori has been on intravenous antibiotics to treat Lyme disease for nearly a year.
Conversion disorder is diagnosed by ruling out all physical causes for an ailment, and it's curable, said Dr. Elizabeth Bowman, a psychiatry professor at Indiana University who has treated 1,000 patients with psychogenic, nonepileptic seizures -- a kind of conversion disorder -- during her 20-year career.
But many patients react to the diagnosis with denial and ask for more tests.
"People don't like to hear that they have conversion disorder," Bowman said. "The thing with any mental illness is that they think it means they're quote 'crazy,' and they're not. They're stressed. They're hurt. Deep in your brain, a message is coming out that's like an SOS sent in the language of the body. It's encoded."
Did Ticks Cause the Tics?
Although Lori was honored with the Tick-Borne Disease Alliance's Courage Award this month, Schaffner said groups often peg symptoms to the wrong illness in an attempt to explain them.
"Then, when science doesn't bear out, it's very difficult for people to accept that," he said, adding that "chronic" Lyme disease was an example of this.
Schaffner, who heads Vanderbilt University's department of preventive medicine, said doctors at the Infectious Disease Association of America concluded that the bacterium that causes Lyme is killed off after a week or two of antibiotics. It doesn't linger and cause recurring or worsening symptoms.
"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 ABCNews.com could not reach Alycia and her family, local news articles suggest she is back to pitching for her high school team.
In Saratoga County, where Lori lives, there were 525 cases of Lyme disease in 2011, according to records from the New York Department of Health. In Genesee County, however, where Le Roy is located, there was one case that year.
Le Roy Girls Get Better, but Lori Doesn't Improve
As 14 of the 19 tic-ing teenagers went to Dent Neurologic Institute for further testing, with help from experts at the New York Department of Health and the National Institutes of Health, Brownell refused to send Lori there.
"No, Lori did not go to Dent, would never go to Dent, nor would I ever want to have them see her," Brownell said. "They're the ones saying it's mass hysteria for those other girls like in Le Roy."
McVige, a pediatric neurologist at Dent Institute, treated the other Le Roy teenagers, looking for infectious or environmental causes for their tics. She found none.
McVige also tested them for Lyme disease. None of her patients tested positive for that either.
"We even called other infectious disease specialists and retested everyone again," McVige said. "They had multiple tests and retesting done. Nobody actually had Lyme disease."
Although a few of the girls had pre-existing Tourette's syndrome, a neurological disorder characterized by tics, the rest were diagnosed with mass psychogenic illness.
"The diagnosis of mass psychogenic illness was not made without considerable input from regional and national experts," the institute wrote on its website at the time of the diagnosis. "We understand the difficulty some of our patients and family members may have with our diagnosis. It is also reassuring to see that most of our patients are improving significantly over the last several months."
But Lori's mother called the institute's diagnosis "wrong, wrong, wrong." Although doctors from Dent Neurologic Institute had never met Lori, her mother insisted the institute didn't test for Lyme, which McVige denied.
"I really think they want people to hide somehow," Brownell said. "Dent has clamped the mouths up of Le Roy people, and I don't know how or what, but I know a lot of them don't want the media."
McVige's colleague, Dr. Lazlo Mechtler, told the local NBC affiliate, WGRZ, that the patients often got worse after media appearances.
"They had more symptoms, they had worsening of their movement disorder, they passed out, they had seizures, it was very concerning to me," Mechtler told WGRZ.
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."