Lyme disease victims say it can happen here

by Thomas Schultz
News-Press Staff Writer
November 3, 2003

Owen Thomas walked his Foothill Road back yard—gesturing toward the adjacent Barger Canyon and the thick brush there, where a tick had earlier attached to his right thigh.

He suspected the insect could transmit Lyme disease, but soon after that February bite, medical workers told Mr. Thomas that the illness could not be caught locally, he said.

But the Santa Barbara city civil engineer, 49, has battled symptoms ever since. After several tests, he registered positive for the potentially devastating ailment most associated with the East Coast.

“They did what they were trained to do,” Mr. Thomas said of his caregivers, whose names he chose to withhold. “It’s just the system, in my opinion.”

His case highlights an apparent weak link in that system: Contrary to what some residents and even some doctors might think, Lyme-carrying ticks do lurk across the county, ready to spread the infection.

From 1998 through 2002, the county Public Health Department recorded five cases diagnosed in the region, a number considered by the state to reflect a low- to no-risk area.

“The Central Coast and Southern California is not one of the places that Lyme disease has classically been recognized,” said Dr. Stephen Hosea, a Santa Barbara infectious diseases specialist.

That, and a mix of other issues, make doctor education efforts tricky, he said.

“The difficulty with Lyme disease is there is not a definitive test to make the diagnosis,” Dr. Hosea said. “And a lot of the symptoms are very nonspecific, including fatigue, muscle aches and pains, neurologic pains and nonspecific joint pains.”

“There are people reported to have Lyme disease that have a negative blood test,” he said. “Therefore, it’s very difficult for the clinician to distinguish.... This is the most difficult area with regard to Lyme disease, and why many people have trouble dealing with patients who do have Lyme disease.”

Amy Bellomy, a senior county Public Health epidemiologist, said her department has repeatedly advised doctors that Lyme is a local threat.

“Because the disease is so rare, that might be where the misperception comes from with the physicians, because it’s not something they encounter on a regular basis,” Ms. Bellomy said. Still, she said, she’s never encountered a local doctor unaware of the threat.

The ailment is named for the Connecticut town where, in 1977, it was first detected in the United States. Lyme is caused by a bacterium, Borrelia burgdorferi, and infects more than 16,000 Americans each year, according to the Centers for Disease Control.

The disease can lead to arthritis and neurologic abnormalities.

Mr. Thomas believes he got the disease while flying a toy airplane with his 5-year-old son. A wind gust pushed the plane down the canyon, and he retrieved it wearing shorts, he said.

More than four hours later he found the parasite, an adult male western black-legged, or deer, tick.

“This guy just popped right off, just the way he’s supposed to,” Mr. Thomas said.

In two days the bite area had begun developing into a red and hot oval rash that eventually grew to the size of his hand, a lesion referred to as a bull’s-eye rash. Concerned, and with his regular doctor on jury duty, Mr. Thomas visited an urgent care center.

A medical worker there told him Lyme is not a threat in Santa Barbara, and that unsuspicious tick bites are not typically treated with antibiotics, Mr. Thomas said.

But antibiotics were prescribed anyway, he said, because the rash seemed unusual.

“I remember saying, “I would be the first case.”

After two weeks of medication, Mr. Thomas visited his regular doctor. By this time, the rash was gone.

He again was told there is no local Lyme threat. The physician said that if Mr. Thomas had been exposed, the antibiotics took care of the problem.

Still concerned, Mr. Thomas insisted on a test. He was given the ELISA (enzyme-linked immunosorbent assay) blood screen, the first of two tests commonly used to detect Lyme. If this first test returns positive then a second—the Western blot—is typically given.

But the ELISA came back negative on three separate tries.

For a while, Mr. Thomas felt OK.

No headaches. No flu, fever. No physical symptoms.

At the start of May, however, he experienced a strange tingling in his hands and feet. “The bottoms of my feet felt mushy.”

Through a Lyme support network, he contacted Mark LaFevers, a Carpinteria resident who believes he got the disease more than a decade ago near his home.

“One thing I want to do is get the word out that it is here,” said Mr. LaFevers, a heavy machinery mechanic who has battled a range of body aches, muscles tremors, sleep deprivation, stress, fatigue and other symptoms. “It feels like if you’d stayed up for 48 hours straight and you’re just jangled. A lot of people say it feels like a road rumble, like a road vibrating.”

Mr. Thomas returned to his regular doctor and explained his tingling sensations. He had been reading up on the disease independently, and had learned that to wipe out Lyme, his antibiotics regimen should have been up to three times as strong and long.

Conferring with Mr. LaFevers, Mr. Thomas then chose to see a different doctor and at the same time pay for a Western blot on his own, because the test was not covered by his health insurance.

It came back positive.

“Once I had that, it was like a key to treatment,” Mr. Thomas said. “Why don’t they just give you the second test first?”

But Dr. Hosea said the solution is not that simple. “Unfortunately, usually the case is the screening test is positive and the Western Blot is negative.”

In fact, the physician said, neither test is highly reliable.

“I have seen people who have been bitten by ticks and have a classic story and looks like they should have it, and yet their blood test is negative,” he said.

He also described positive tests for people without tell-tale symptoms or known tick exposures.

“The problem is making a definitive diagnosis and knowing whether people are going to respond to antibiotics or not,” Dr. Hosea said. “You want to do something for people, and yet you don’t want to mistreat them because there are bad side effects to medicines, too.”

A doctor must either observe a bull’s-eye rash, or observe at least one later Lyme manifestation in combination with laboratory confirmations of the disease, to officially report a case. Some suspected cases do not qualify under these standards, which some patients consider too strict.

Based on his experiences, Mr. Thomas said anyone who suspects he or she has the ailment should find a “Lyme-literate” physician.

“These days you really have to be an advocate,” he said.

Today, Mr. Thomas battles mostly the continued strong “buzzing” in his feet and tingling in his hands -- sensations he compared to drinking several cups of coffee.

He remains on antibiotics, hoping to wipe the bacterium from his body.

“I think I’m going to get it,” Mr. Thomas said. “But it is extremely persistent.”

Symptoms of Lyme disease:

Source: National Institutes of Health

IGeneX’ Response to Press News Article

Dr Nick Harris
Letter to the Editor:

Dear Editor,

Your December 3rd article on Lyme disease conveyed misinformation. Contrary to what your experts said, Lyme disease is very present in California. The tiny nymphal tick infects hundreds of Californians every year causing headaches, chronic fatique, arthritis and serious neurological problems. Two things need to happen to turn the tragic tide of Lyme misinformation: Physicians need to request the correct test to detect Lyme disease ( The Western Blot) and the CDC needs to recognize more of the many symptoms that qualify a case as Lyme so higher case numbers can be accurately reported.

Dr. Nick Harris Ph.D.
CEO IGeneX Reference Laboratory
Palo Alto