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Science Specialist Ed Yeates reportingThis story is a special report about people who have suffered through an extremely painful and unusual situation. And all because of a disease they were told they had, but really didn't. And another disease they DID have, but never knew.
Toby Lee was told two years ago he had Parkinson's disease. But now, a University of Utah physician at this clinic in Tooele is treating him for something else.
His is just one of several hard to believe stories about people who may have suffered the fate of being misdiagnosed.
Toby Lee had difficulty getting dressed, and doing things such as buttoning a shirt. His face and hands began trembling. He fell down stairs at work.
"I was losing feelings in my legs and that was causing me to drag or favor one side from the other," Lee says.
A neurologist first diagnosed his condition as "Stiff Man's Syndrome."
So, it was back to more specialists and more tests. Finally, he was told he had young onset Parkinson's disease - a diagnosis that would dramatically alter his life.
"The picture that we were painted as far as that went is that I would get to the point where I couldn't get around," Lee says.
Toby began making decisions based on what he thought would be the outcome.
"Trust funds for the kids, to ensure college, to set up wills and power of attorneys, somebody to help Missy when I couldn't make the decisions," Lee says.
For the past two years, Toby has been taking medications for Parkinson's.
"We have five that he had to take every day so each month, we were refilling that," says Toby's wife, Missy.
His own doctor, Jeffrey Lee - no relation incidentally - had no reason not to believe the original diagnosis.
His patient had classic symptoms of Parkinson's.
"The shuffling in his gate, what we call cog wheel rigidity where his arms would just move like this when they come up and down," Dr. Lee says.
Then something happened. Based on his exposure outdoors here and out of state, a friend -- not a doctor -- suggested the possibility of Lyme Disease - a bacterial illness caused by a tick bite.
His blood test, sent to a specialized lab in California, came back overwhelmingly positive.
"And the test results came back and I couldn't even believe it. It just wasn't possible they could miss something that big," Lee says.
A big revelation for Toby - and apparently for others as well.
Lyme disease, when diagnosed correctly, is a great imposter, mirroring symptoms of many illnesses.
Shelly Wolf thought she had multiple sclerosis. But while back East with her parents, a physician there recommended a test for Lyme Disease.
"And it came back positive and he said, 'you definitely have Lyme. You don't have M.S.'" Wolf says.
Like Toby, Shelly never remembers getting bit by a tick. But she's spent a lot of time outdoors here and in her hometown back East.
"We go up to the mountains and we go to the lake and we go camping in the desert, and so I've definitely had the opportunity," Wolf says.
Years of living with something they thought they had, when that was not their fate at all.
For Toby, Shelly and others we talked to, it's been a bittersweet experience.
"A lot of anger, very upset, thinking that I had lost time, time that I cannot ever get back with my kids, with my wife, pieces of life I cannot remember," Lee says.
How is Toby doing with his new treatment? And what about the controversy itself over Lyme disease? More on that and a look at some other patients fearing a misdiagnosis Friday on Eyewitness News at 10 p.m.
