ABC 13 News anchor Noreen Turyn has Lyme Disease. She takes us through her journey and the long road for others in a special series called 'The Lyme Controversy.
Right now, there are thousands of people with the same symptoms: unexplained aches and pains, low grade fever, fatigue. They don't know what's wrong with them, and their doctors don't know either.
It may be one of the most mis-diagnosed medical problems today, and if left untreated, it can attack your joints, heart, nervous system.
Yet it's not some mystery illness- it's Lyme Disease.
In a documentary by Open Eye Pictures, real people tell their stories of being misdiagnosed with Lyme Disease, and their seemingly futile search for answers.
Michele Spruce is among them.
"I had a doctor at UVA tell me it was all in my head, and that I probably needed to see a psychiatrist," she said.
About 12 years ago, she got a bite white camping and hiking in the Smokey Mountains. She had the classic bull's eye pattern, and still no one thought of Lyme Disease.
"[I] went to the doctor, and she said I got bit by a spider. Even though I had the rings I had the fever I had the flu."
Spruce didn't think of it either, but she began getting extreme pain, swollen limbs, disrupted sleep, constant fatigue.
Doctors put her on a variety of medications, but keeping up her job at the Lynchburg Community Market became increasingly difficult.
"I went to urologists, neurologists, everything, and could not, no one did a Lyme disease blood workup," Spruce said.
About two years in, a doctor her mother worked with in West Virginia recognized the symptoms, saw Spruce, took her off all the other drugs and put her on antibiotics.
"And within six months I was back to work full time and back to being Michele," she said.
But after having waited two years for proper treatment, Spruce, like countless others, has had many setbacks, and is now out of work and on disability.
Lyme Disease Specialist Dr. Norton Fishman said, "I've been in business 42 years doing this, this is easily the toughest disease I've ever seen to diagnose or treat."
Dr. Fishman practices in Rockville Maryland. He became what's known as a Lyme Literate Medical Doctor, after learning some patients he had misdiagnosed, had gone to a doctor in NY, were treated for Lyme, and were getting better.
"And I started looking into it, doing testing and started following up with treatment, and what other doctors were doing and I found out that 80% of my people I was calling chronic fatigue, fibromyalgia, was induced by Lyme Disease," Fishman said.
Infectious Diseases Specialist Dr. Robert Brennan said, "They used to say syphilis was the great masquerader because it would present in so many different ways, seizures, dementia, heart disease and it was all Syphilis, and this is the same way."
That and the fact that you don't always get the warning signs is why Lyme Disease is so hard to diagnose.
"You don't have to have a tick bite, you don't have to have a rash, everyone agrees with that," Dr. Brennan said.
The current tests are also unreliable. That's why the CDC says doctors shouldn't base a diagnosis on them; instead, do some detective work. Dr. Fishman says not enough doctors are listening. He believes possibly "millions" are suffering from chronic Lyme Disease and aren't aware of it.
This story first aired November 6, 2007.