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Florida, National Lyme Disease Symptoms Misdiagnosed At Alarming Rate

Ann Moore had been an outdoorsy person her whole life.

She knew many ticks had bitten her, but she didn’t know at least one of those ticks contained bacterial pathogens that damaged her body and mind.

Moore, a 53-year-old Gainesville woman, didn’t know that if she didn’t get treatment soon she would have symptoms varying from brain fog to muscle and joint pain.

For 25 years, she didn’t know she had Lyme disease.

The infectious disease, transmitted typically through a black-legged tick bite, releases bacterial pathogens into the body.

Moore was diagnosed in Gainesville in 2011. She had been to many doctors who diagnosed her with different diseases, such as multiple sclerosis and lupus.

Her symptoms included lack of concentration, inability to form words, poor vision, face numbness, chest problems, depression and joint pain that put her in a wheelchair.

She did not have the "bull's-eye" rash, which is the clinical sign of Lyme disease.

“If you have it and you aren’t getting treated for it, you’ll ultimately become ravaged by it," Moore said.

She has been on antibiotics, probiotics and herbal treatments to help her fight the disease.

Dr. Holly Donohoe, associate director of the Tourism Crisis Management Institute at the University of Florida, said the number of reported cases of people who have Lyme disease in the U.S. — as reported by the Centers for Disease Control and Prevention — has increased over the past 10 years, from 21,273 in 2003, to 30,000 in 2012.

And the CDC said in August the number represents 10 percent of the cases, and there were about 300,000 cases of Lyme disease this past year.

In Florida, CDC claimed 43 reported cases of Lyme disease in 2003. The annual total increased to 67 cases in 2012.

“Although when we compare that with some of the highest areas such as Connecticut, where case rates are in the thousands, the numbers in Florida might seem negligible,” Donohoe said.

Florida is behind in understanding tick-borne diseases and the complexity of tick ecology, she said.

Donohoe said some tests come back as false negatives because a patient tested too soon (before six weeks), and does not have time to develop the antibodies the test detects.

If a patient waits until after six weeks, the test may come up as positive, though by then it’s too late. The disease is systemic and can affect a number of organs and tissues in the body.

“It’s the recognition and acknowledgement of the patients that’s missing,” said Dr. Kimberly Kaye, a physician specialized in internal medicine for Haile Medical Group.

Kaye has treated a few hundred people with Lyme disease. She said some patients are not aware they need to be paying attention to avoiding tick bites or removing the tick when they see one because they feel like it’s not a threat locally.

If patients and doctors recognize the disease early, it can be solved with antibiotics, she said. If its recognized after six months, the disease becomes more difficult to eliminate.

But the real problem, Donohoe said, is that physicians in Florida sometimes don’t recognize the disease.

This misdiagnosis of Lyme disease occurs in other states, too.

She said a recent study by Dr. Kerry Clark, a public health professor at the University of North Florida, which said there are two species of Lyme disease bacteria that were previously unknown to infect human patients.

He also found that lone star ticks, previously found to be incapable of transmitting Lyme disease, may be transmitting Lyme disease in the Southeast.

Patients are suffering and the doctors have treatment guidelines they are supposed to use, Donohoe said, but they don’t always get the desired results.

“More Americans every year are being infected,” she said. “And despite arguments over treatment protocols and science diagnostics, the reality is that these patients just want their health back.”

Caitlin is a reporter for WUFT News and can be contacted by calling 352-392-6397 or emailing news@wuft.org.