It starts with a tick

Tallahassee Democrat
By Kathleen Laufenberg

DEMOCRAT STAFF WRITER

Forget Dracula. Beware the bite of the tiny tick.

Some of these bloodsucking parasites can leave you with more than a creepy-crawly feeling or painful bite. Some transmit diseases, including Lyme, an inflammatory illness that can appear first as a rash, headache and fever and later as arthritis, neurological damage and cardiac abnormalities.

"I think it's a huge problem," said Elizabeth Markovich, a family nurse practitioner in Tallahassee who treats people with Lyme. "It can be very hard to diagnose," particularly in people who have unknowingly had it for a long time.

Lyme sufferers include writer Amy Tan, who spoke in Tallahassee in February, and former Florida State University quarterback Wyatt Sexton, diagnosed earlier this month. Tan, author of "The Joy Luck Club," went undiagnosed for several years and had advanced symptoms that included hallucinations and outbursts bizarre enough to make her think she had Alzheimer's disease. Sexton was involuntarily hospitalized in June after police found him on Spoonwood Drive referring to himself as God.

Not surprisingly, when people exhibiting such strange behavior say they have Lyme disease, the finding can become an eye-rolling controversy. Some doctors don't give credence to a Lyme diagnosis in such cases - or in cases involving people who can't recall a tick bite, who exhibit generic symptoms such as fatigue and headache, or who complain of problems associated with simply growing older, such as arthritis and forgetfulness. Some insurance companies also refuse to pay for the more comprehensive - and expensive - tests for detecting Lyme.

Further complicating the picture here in the South is that Lyme traditionally has been connected with tick bites in the North.

Yet in the wake of Sexton's headline-grabbing diagnosis, other Tallahasseeans with Lyme disease came forward to tell their stories. They want more people - including doctors and insurance managers - to be aware of the disease and its wide range of symptoms.

A prompt diagnosis

In a classic case of Lyme - so named for its 1977 discovery in a group of arthritic children living in Lyme, Conn. - the infected person finds a tick and removes it. According to most accounts, the tick needs to be attached at least 24 hours. It doesn't need to be big; tiny seed ticks transmit the disease, too, and are considered the big culprits. Because of the seed ticks' size, people are less likely to spot them.

A week to 10 days after the tick is removed, a red, bull's-eye-shaped rash (usually in the area of the bite) appears. The CDC says about 80 percent of those bitten will get such a rash; Markovich said it's more like 40 percent. Along with the rash come profound fatigue, fever, headache, stiff neck, joint pain and muscle aches.

Stan Rosenthal, a Tallahassee forester, recently experienced those classic symptoms - except he didn't see a rash - about a week after he removed a tiny tick from his belly button. He probably picked up the tick the day before, he said, while guiding Girl Scouts on a nature walk.

"I started feeling achy.... I went to bed, waking up on and off all night and not feeling very good. The next morning, I got up and had a headache along with a (100.8-degree) fever, and I was real achy."

Because the 46-year-old is a longtime forester, he has sat through Lyme training. And he knows about 10 people who have the disease. So eventually, as he thought about his symptoms, "I said, 'Wow! I wonder if I've got Lyme disease?'

"I've been bit by ticks many times before," he added, so Lyme wasn't the first thing to pop into his mind.

He consulted a doctor, who confirmed Rosenthal's self-diagnosis. The forester began taking oral antibiotics and is finally beginning to feel better. According to the Centers for Disease Control, when Lyme is promptly diagnosed, three to four weeks of oral antibiotics is generally enough to knock it out.

Rosenthal said he expects a full recovery.

'A nightmare'

For Terry Nardo and Lynne Willson, the road to a Lyme diagnosis was more like a meandering, potholed trail.

Neither can recall a tick bite or a bull's-eye rash, the key information that often triggers testing for Lyme.

Instead, Nardo's problems began two years ago at work. As a team coordinator at Benedict Engineering, she uses a transcription machine that requires pressing down a pedal. Although she didn't remember injuring her right foot, the 44-year-old started having problems pressing the pedal down. The weakness got worse - and worse.

"It got bad enough that people were asking, 'What's wrong with you? Why are you limping?' ... I knew deep down there was something wrong."

Her first stop was to her primary-care doctor, then to a specialist who later left her a recorded message saying she had an autoimmune disease, possibly lupus.

"I was devastated," said Nardo, who got the message at work. "I was in shock."

Next, she saw a rheumatologist.

"He said, 'Oh, you don't have lupus or any blood disorder.'"

He sent her to a neurologist. She underwent a battery of tests, including five MRIs, and was told she had peripheral neuropathy.

Nardo's symptoms kept getting worse. Finally, she took the advice of a co-worker and got tested for Lyme. The tests came back negative. She requested the more comprehensive tests. Her health insurance wouldn't pay for them, she said, so she did.

They came back positive for Lyme. Now she's on antibiotics - and relieved to have what she says is a correct diagnosis. How long she'll have to take the drugs, she doesn't know. But some doctors say such patients need antibiotics a year or longer.

In the meantime, she tires easily. Her balance is poor. She has fallen. She fears falling again. On bad days, she even uses the walls to help her walk down hallways.

"It's been a nightmare."

More study

Willson, 50, was finally diagnosed with Lyme two years ago - after being misdiagnosed with leukemia and other ailments and seeing various doctors for years. Her symptoms today include arthritis and foot and leg pains. She has trouble driving because it's hard to move her neck. She also has memory problems.

"There have been times when I thought I was really losing my mind," she said.

When she was finally diagnosed, "I was blown away," she said. "I started reading about Lyme and it was all there, in the literature. All the pieces of the puzzle started fitting together."

Now she faces problems getting her health insurance to continue paying for the antibiotic treatments. One further complication in her case is that both her grown children have been treated for Lyme. Willson is convinced she gave it to them in utero. The CDC has not stated conclusively that Lyme can be transmitted that way.

Willson said she thinks she got the disease when she was about 11. One of her thighs swelled to nearly twice its normal size, and doctors nearly amputated. Eventually, the swelling subsided and she went home. Now, she said, she thinks the swelling was caused by a tick bite that gave her Lyme disease.

"There are probably many people," Markovich said, "who have been exposed to it and have never gotten sick. And there are probably different strains of it."

Both of Willson's children have been treated. She has, too, but said she needs more.

Amid the controversy that surrounds the disease, however, one thing seems clear: More study is needed on Lyme.