Controversy over Lyme disease frustrating patients
June 12th, 2009 @ 10:11pm
By Ed Yeates
AMERICAN FORK -- A 19-year-old Utah man is the latest victim of a controversial disease that, so far, has wiped away the past four years of his life. Though symptoms are real, victims are often misdiagnosed or labeled as pretenders.
We've visited this arena before: Toby Lee in 2003. He had difficulty getting dressed; his hands and face would tremble. He fell down stairs at work. Fatigue was overwhelming.
Did Lee have stiff-man's syndrome? No. Maybe early Parkinson's disease? No. Was it the beginning of multiple sclerosis? No, again.
The final diagnosis: Lyme disease; bacteria from a tick bite triggers a cascade of symptoms mimicking all kinds of illnesses. But is it always real, or are some symptoms psychosomatic? The lack of understanding of what the bacteria may do inside the body continues to make Lyme a controversial disease.
Lyme disease patient Ammon Livingston now spends roughly 80 percent of his time on this couch, too weak to move. One of the latest victims of Lyme disease is 19-year-old Ammon Livingston. He now spends roughly 80 percent of his time on this couch.
"[I have] pain in my joints, especially in my neck and head; what's called `brain fog' -- I can't remember things," Livingston said.
Like Lee was administering to himself six years ago, Livingston gets an infusion of antibiotics four times a week. But in Livingston's case, it's at his doctor's clinic.
Some days are good; some are bad. But most of the time, Livingston says he's tired. "Debilitating fatigue to where most days I don't have the strength to walk to the mailbox and back," he explained.
Four years ago, Livingston had everything going for him. He played trumpet in the American Fork High School Band and performed at President George W. Bush's second inauguration. A scholar, an athlete, an Eagle Scout; but when he returned from his trip back East, he came with a fever, cold-like symptoms and a downward spiral.
Chronic fatigue syndrome, sleep apnea, orthostatic hypertension? He too went through all the diagnoses, finally ending with Lyme disease. "It's infuriating to me. Finally, after four years, I get this diagnosis," Livingston said.
Not all doctors agree. That's why Livingston's current physician declined our interview, for fear of being ostracized by her peers.
The antibiotics appear to be working, but how many more and how long before Livingston recovers? "The highs get higher and the lows seem to get a little higher," he said.
A garage sale fundraiser to help pay for Livingston's medical bills is planned for Saturday at 7 a.m. at 300 North and 100 East in American Fork.
Also, a highly-acclaimed documentary on the controversy surrounding Lyme disease is scheduled for national release later this month.