Philadelphia - July 28, 2009
Jared Shea,19, of Coatesville, now uses a device to say hello. His mother Jayne says he was an active, talkative until at age five when he was bitten by a tick.
After that she says everything changed.
"A lot of really eratic twitching that would go on," she said, adding, "He would sit on his bed and cried all the time in pain, terrible headaches."
His symptoms are similar to many other patients featured in a new documentary called "Under Our Skin." Those patients complain of fatigue, pain, involuntary movements, brain fog, and lost mobility.
Like Jared, hundreds of other patients are diagnosed with 'chronic lyme disease' by a small number of doctors who believe the bacteria from a tick can stay in the body and cause long lasting problems.
But mainstream doctors say there's no scientific evidence to prove Lyme disease can be a chronic infection.
Dr. Michael Buckley, an infectious disease doctor and Chief Medical Officer at Pennsylvania Hospital isn't in the film, nor does he treat Jared but he's heard similar stories.
"First of all, I feel very badly for the people who don't feel well," he said, but he doesn't believe Lyme Disease is to blame and says treating with antibiotics over months and years doesn't help and can be harmful.
But for Jared and others, they say it helps.
Jared took oral antibiotics for two years and after, Janye says "We saw twitching stop and I think he grew ten inches and doubles his weight in like two years." She also said after just a day of treatment, he got up out of bed on his own- something he hadn't done for a year."
But Dr. Buckley said, "The studies which have been done a number of times show that antibiotics do help some people with this post lyme disease syndrome but no more people are helped with antibiotics than are helped with placebo in blinded trials."
And there's one more argument.
"People who believe you can have chronic symptoms with negative test think our tests aren't good enough and we just don't believe that's true," Dr. Buckley said.
Jayne believes Jared's immune system was too weak to make antibodies to fight the Lyme infection so it didn't show up on lab tests. (The test does not look for the antigen but for the antibodies.)
"It does exist, it doesn't affect everyone the same way," Jared's father Ray said.
Jared's father wants the way lyme disease is diagnosed and treated changed. Meanwhile the Infectious Diseases Society of America is holding a hearing on Thursday to review their guidelines. Jayne says if Jared had been diagnosed earlier maybe his life could have been easier.
"In the end it's the people who are suffering," she said.
One of the main issues which will be discussed at the hearing is the use of long-term antibiotics. Because they're not recommended in the guidelines, insurance companies won't pay for them.
At the hearing there will be experts on both sides of this debate.
The documentary "Under our Skin" by Open Eye Productions debuted at the Tribeca Film Festival. It will be shown at select theaters in the Philadelphia area in August. For more information, visit:
www.underourskin.com
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