July 23, 2010— -- Desiree Jennings was living a dream come true. The 25-year-old had a marketing job at a major company, was married to a handsome, successful man, and had challenging hobbies: she was an avid runner, and a cheerleading ambassador for the Washington Redskins football team.
But almost overnight Jennings went from the picture of happiness and health, to a twisted, stuttering vision of pain and suffering.
After a routine flu shot last fall, Jennings said she began experiencing fever and painful body aches. The symptoms quickly progressed until she could only walk with a twisted, halting gait, and had trouble reading, doing simple math -- even remembering things. Her condition put a halt on her once-frenetic lifestyle.
"I want to work, I want to be doing something," she said. "But who's going to hire somebody who can't remember what they did the day before?"
Jennings developed another odd symptom -- a strange foreign accent; the Midwestern woman suddenly sounded British. "It sounds like an accent, but it's not. I just can't pronounce words anymore," she said.
But perhaps worse of all is what happens when Jennings tried to recall specific memories. In her "20/20" interview, Jennings' speech devolved to stuttering, then complete gibberish.
"The mind keeps bouncing and it won't stay on that memory," she explained. "It gets garbled up on a bad hard drive so to speak."
In search of a cure, Jennings and her husband Brendan visited countless doctors and four hospitals, among them Johns Hopkins Hospital. There, a physical therapist told Jennings about dystonia, a rare movement disorder that causes the muscles to twitch or convulse involuntary. The symptoms resembled her own.
Jennings looked online and saw that in some cases, people with dystonia, who have trouble walking forward like she did, can walk backwards. Even more exciting for the devoted jogger was that a medical website said some sufferers can run.
"Within five minutes of seeing it on the website, she had her running shoes on," Brendan recalled.
Miraculously, Jennings could run. She also found out she could walk backwards, and even sideways, and that while doing so, her speech returned to normal.
"It's the strangest thing," she said. "As soon as you try to get into a running motion, you feel the whole body correcting itself."
It wasn't long before Jennings became a media sensation. Video of the beautiful young cheerleader, flopping about and stuttering one moment, running and talking normally the next, went viral. At once, she became the poster child of the anti-vaccine movement and a global Internet joke. YouTube comics garnered millions of hits setting her jerky movements to rap music.
Jennings Turns to Controversial Osteopath for Therapy
When not running, however, Jennings was far from well. Not only could she not walk or talk normally, Jennings said her brain sometimes forgot to tell her lungs to breathe, leading to fainting spells and convulsions.
"When you have somebody passing out and shaking uncontrollably, it starts to get scary," Brendan said.
Traditional medicine having failed her, Jennings said she decided to do something "outside the box," and ended up at a North Carolina clinic run by Dr. Rashid Buttar.
Buttar uses an unproven, alternative treatment for almost every medical condition, from autism to cancer. It's called "chelation," the chemical removal of metals from the body.
When Jennings arrived at Buttar's clinic in October 2009, she was barely able to breathe, and collapsed in his waiting room. He pumped her with IVs, and because he suspected she had been poisoned by the mercury in the flu shot, began his unproven chelation process, where chelating agents bind to metals in the body, including mercury, and then are excreted in the urine.
Within less than two weeks, Jennings' condition seemed to improve: she walked again, and her stutter disappeared.
But just as she was leaving Dr. Buttar's clinic on her last visit in December 2009 -- with "20/20's" cameras rolling -- it all seemed to fall apart. Jennings was in distress again. She could no longer walk forward, and had to be taken out in a wheelchair.
While millions viewed video of Jennings on YouTube, those following her case grew suspicious that her symptoms were all a hoax. In fact, what has bothered Jennings most about her unorthodox fame is the online assault on her integrity.
"Why would I fake it?" she said during her interview with "20/20." "I've had a great life. . . Now I'm sitting at home every day, bored to tears."
Still, there has been skepticism in the medical world. Dr. Steven Novella, an assistant professor of neurology at Yale, who has followed Jennings' case closely on the Internet and is comfortable commenting from afar because dystonia is primarily a visual diagnosis, said that Jennings' symptoms were not typical of the disease. Novella is confident whatever she has was not caused by mercury in a flu shot.
Other experts consulted by "20/20" agree. Dr. Charles McKay, a board member of the American College of Medical Toxicology, said Jennings would have been exposed to far less mercury in a flu shot than in a tuna steak.
Experts Say Symptoms Are 'Psychogenic'
McKay said Buttar's chelation treatments for Jennings were unnecessary and ineffective.
When asked by "20/20" about the effectiveness of his chelation treatments, Buttar claimed he gets results and pointed to patient testimonials on his website. But when pressed by Jim Avila that "anecdotal stories on the Internet are not science," Buttar responded: "Nobody said it was science."
But what caused Jennings' strange symptoms? Novella and other leading neurologists interviewed by "20/20" believe that Jennings' disease is in her head. They don't believe she has faked her symptoms, but instead that her unconscious mind has caused them.
"It's a psychogenic disorder rather than a neurological disorder," Novella said.
Novella feels the temporary improvements Jennings experienced while undergoing Buttar's treatment were also in her mind: she got better because she thought she would. He called it "the placebo effect on steroids."
Jennings finds the "psychogenic" label insulting. "It's a convenient way for incompetent doctors to get you out of their office," she said.
Today, Jennings' condition does not appear as severe, but she remains convinced that the flu shot caused her condition, and she continues to search for a cure. She says she is currently seeing a specialist for her condition and still seeking answers.
"If I have to go over to China and do experimental procedures, I'll find a way to get it all back," she said. "It may take a while, but I will get everything back. I will find a way."
To learn more about dystonia, visit the Dystonia Medical Research Foundation website.