TBO.com Tampa Bay Online
By KEITH MORELLI | The Tampa Tribune
Published: January 24, 2011
For more than two years, Dolores Claesson has fought a microscopic enemy, a germ passed into her 17-year-old daughter, Sofia, by a sesame seed-size tick.
If caught early, Lyme disease could have been easily treated, said Dolores Claesson, who runs a support group and manages a widespread network of Lyme disease patents and researchers. But because the malady has not really found a home in Florida yet, she said, doctors here are reluctant to diagnose it.
And some medical researchers agree, saying many doctors simply are complying with a study by the Infectious Diseases Society of America that warns against over-diagnosing Lyme disease because its symptoms are so complex and mimic other ailments.
In Sofia's case, doctors misdiagnosed her disease and mistreated it, stretching her sickness from days to months and eventually years. Now, her immune system is depleted and she is a perfect host to any virus that comes along, her mom said. Just this week, the teen spent eight hours in a doctor's office getting an intravenous antibiotic drip.
In October 2008, Sofia contracted a high fever, a sore throat and her doctor said it was mono, Dolores Claesson said, and referred the teen to other physicians.
"A pediatric physician said it was fatigue syndrome," Claesson said, "that it was hormonal and common among high achieving girls. He told me to take her on a 20-minute walk three times a week and she would be fine." The doctor also advised Claesson to take her daughter to a psychiatrist.
After a while, Sofia developed warts on bottoms of her feet and began sleeping 20 hours a day, her mom said.
"In all," she said, "we saw about 20 doctors."
None thought of Lyme disease.
"This is normal." Claesson said. "They don't know about it. They don't know the signs and symptoms. In the Northeast, it's different. But here in Florida, doctors don't know about it and don't know how to diagnose it. They don't know how to treat it.
"I want my kid fixed," she said. "Doctors here are like ostriches putting their heads in the sand. It's been 27 months of pure hell," she said.
Over the past couple of years, Claesson, who has an educational background in biochemistry but chose a career in business, is host to a Lyme disease support group that includes 400 researchers, doctors and victims in 40 countries.
"We're lepers," Claesson said. "We can't get any treatment. It's bankrupted people. We are the new HIV/AIDS patients and we are being ignored by physicians and if they do let us know we have Lyme disease, they tell us to go to New York. We can't all fly to New York for treatment."
She said her daughter, who has missed much of the past two years of school, likely contracted the disease during a recent trip to Europe.
She understands that doctors here are not familiar with the disease. They are pressured to diagnose something during short office visits and most of the time, the patient actually suffers from the flu, she said. Lyme disease symptoms are complicated, she said, and often look like the common flu.
"Doctors have only 10 minutes to make a diagnosis," she said. "Mostly, it's hit or miss with cures."
At 42, Shawn Ingram should be at the peak of his career as a paramedic firefighter. Instead, he's holed up in his house, on full disability because of Lyme disease.
He's been sick for 12 years and was diagnosed with Lyme disease eight years ago.
"Back then, I had no idea what was going on," he said. "Being in the medical field and 30 years old, I was gangbusters. I was a nothing-can-harm-me kind of guy."
One day he came down with a bad flu, he said. "It never went away."
Fatigue, exhaustion set in.
"My mental clarity was gone," he said. "Now, I don't have endurance and some days just walking though the house is taxing."
A Florida native, Ingram said he thinks he was bitten by a tick somewhere in Central Florida, perhaps when he was fighting brush fires.
Doctors in Florida passed him around, unable to diagnose what was wrong, he said. "It took me about three years to find a doctor," he said. "I even went to the Mayo clinic in Jacksonville. In those three years, I saw about 18 doctors. I saw infectious disease specialists, a cardiologist and internal medicine specialists."
They guessed at different maladies, he said. Chronic fatigue syndrome and fibromyalgia topped the list.
Lyme disease, at the time, just didn't happen in Florida, he said.
"Nobody was really treating it," said Ingram of Tampa, "until I got diagnosed eight years ago."
Finally, he found a local doctor who drew blood and sent it to a specialized laboratory in California. The results: Lyme disease, he said.
Since then, he has reached out to people with Lyme disease, offering whatever support he could.
"I've seen people recover from it and I've seen people not recover from it," he said. "If it's caught early, it is a treatable disease. But, the medical system in Florida needs to be educated; doctors in Florida need to be educated."
Lyme disease was first documented in the United States in 1975 and is named for the town in Connecticut where some of the first cases occurred. Experts say that over 16,000 cases a year have been reported in the United States since1993, mostly in the Northeast.
By comparison, incidents of West Nile Virus across the nation average nearly 1,700 a year.
A tick-born disease similar to Lyme is sweeping across the southeastern United States. According to the Centers for Disease Control and Prevention, the southern tick-associated rash illness (STARI) is caused by the lone-star tick.
But, unlike Lyme disease, STARI has not been linked to arthritic, neurological or chronic symptoms.
While the cause of STARI is unknown, studies have shown that is not caused by Borrelia burgdorferi, the bacterium that causes Lyme disease, the CDC reported.
Carol Fisch is a medical researcher living in Sarasota who has devoted much of her work to Lyme disease. Diagnosed with Lyme disease 18 years ago in Michigan, she said she was sick for five years before doctors correctly discovered what was ailing her.
Now, she heads a support group for Lyme disease victims.
"The disease is spreading faster than wildfire," she said. While many cases diagnosed here originate in other states, Florida is home to ticks that carry Lyme disease, she said.
She admits that Lyme disease is complex. Symptoms caused by pathogens that are difficult to detect vary widely and in some cases are indistinguishable from other diseases.
"The way it will show itself may be different in different people," she said. "A lot has to do with genetics.
"Physicians need to be aware that it's here," she said. "For every case that is diagnosed, 100 are misdiagnosed."
Across Florida, Lyme disease cases have more than tripled since 2007, according to the Florida Department of Health's Office of Statistics and Assessments, though the numbers are not staggering.
In 2007, 30 Lyme disease diagnoses were reported in Florida and that jumped to 88 in 2008. In 2009, the last year available, Florida recorded 110 cases of Lyme disease.
In 2009, Hillsborough County's 11 reported Lyme disease cases tied Sarasota and Lee counties for the most among Florida's 67 counties. The county only had one case reported in 2007 and two in 2008.
Link to article: http://www2.tbo.com/news/breaking-news/2011/jan/24/researchers-florida-doctors-reluctant-to-diagnose--ar-12383/