Educating Californians on Lyme disease

Six years ago, Tony Pennisi marked his 40th birthday with a life- affirming hike up Mount St. Helena through Robert Louis Stevenson State Park in Napa. Back home in Calistoga, he discovered an enlarged tick on his hip encircled by a red ring. Pennisi, a professional forager and savvy outdoorsman, suspected it to be a Lyme tick.

He immediately went to his doctor who, Pennisi says, was skeptical about the existence of Lyme disease. Pennisi insisted on being given a blood test.

"By the time I got the results back eight weeks later that I had Lyme, I was a wreck," he said. Pennisi, who now lives in Vallejo, became extremely light-sensitive, taping newspapers over the windows. He couldn't go outside without sunglasses. Besides great fatigue, he became irritable, had night sweats, lost weight faster than he could eat and slurred his speech.

While antibiotics have helped him almost fully recover, Pennisi recently relapsed.

"I actually fell asleep in the office while listening to the messages on the phone," he said.

Lyme disease has popularly been seen as a regional illness afflicting the Northeast and upper Midwest. Because of the experiences of people like Pennisi, however, an increasing number of local activists are trying to alter that perception. A pamphlet released by the California Department of Health Services says that western black-legged ticks infected with the Borrelia burgdorferi bacteria, which causes Lyme, have been found in 41 of the state's 58 counties.

"I wish I had a nickel for every time I've heard that Lyme disease doesn't exist in California," said Dr. Raphael Stricker, a San Francisco physician who specializes in treating patients with the disease. "We are seeing a lot more patients from around here -- especially from Northern California in Mendocino and the northern counties."

Stricker, who is also president-elect of the International Lyme and Associated Diseases Society, recently closed his practice to new patients because of heavy demand.

The disease is transmitted when an infected tick the size of a poppy seed passes a bacterial spirochete (a spirally, undulating bacterium) into the human host it bites. Roughly half the time, a bull's-eye ring will appear around the bite, signaling infection. The initial symptoms can include fatigue, fever, joint aches and sleeplessness. While nonfatal, if gone untreated, the bacteria can greatly affect the immune system and even enter the brain.

Because Lyme's effects on the body often mimic chronic fatigue syndrome, Lou Gehrig's disease or multiple sclerosis, the disease has been called "the great imitator" for its propensity to be misdiagnosed.

Ken Broad, 39, a portfolio manager for an investment company in San Francisco, knows this all too well. After contracting the disease on vacation in Cape Cod, the Mill Valley resident came home when symptoms such as brain fog, muscle twitching, facial numbness, vertigo, depression and chest pains started to accumulate.

When visits to 15 doctors, including neurologists, cardiologists, specialists in internal medicine and genetic counseling, failed to alleviate his various ailments, a frustrated Broad conducted an Internet search linking such symptoms as brain fog and muscle twitches together. This led him to a paper by a doctor that described all his symptoms as indicative of late-stage Lyme disease. Broad flew to Boston to visit the doctor who prescribed the antibiotic Tetracycline -- and later Biaxin and Plaquenil -- that have helped him now feel 95 percent normal.

"The last step was being diagnosed by a psychiatrist for happy pills (for depression)," Broad said. "How many people my age have to become completely debilitated until you get attention? I literally thought I was dying." He wrote a will and made plans for his wife's parents to move in to help raise his two daughters.

Broad now spends much of his free time advocating for education about the disease, starting the Web site www.lyme-advocate.info. He's also involved with the California Lyme Disease Association.

The peak time for contracting the disease is between April and June when the nymph ticks -- one stage of growth before an adult -- are active.

"I can't emphasize enough how easily overlooked these ticks are," said Bob Lane, a professor of medical entomology at UC Berkeley, who has studied tick-borne diseases for more than 30 years. In field studies in the oak woodlands of Mendocino County, Lane found infection rates for ticks with Borrelia burgdorferi from 5 to 15 percent for nymph ticks and 1 to 3 percent of adult ticks with a few areas approaching 40 percent for nymphs.

"The transmission cycles in the Northeast and Midwest are very different than out here," Lane said. In his studies, Lane found that the people at greatest risk for contracting the disease were those who had direct contact with wood -- including sitting against a tree or on a log, or gathering wood.

Ron Keith, an assistant manager for the Marin/Sonoma Mosquito and Vector Control District, said in an e-mail interview that western black-legged ticks have been found in just about every park or recreation area in the North Bay, including Point Reyes National Seashore, Golden Gate National Recreation Area, as well as China Camp and Samuel P. Taylor state parks in Marin County, and Armstrong Redwoods State Reserve and Sugarloaf Ridge and Annandel state parks in Sonoma County. Keith contracted the disease mountain biking at Annandel. While he still suffers from peripheral nerve damage and a tingling sensation, he said he is starting to feel better after three long-term regimens of antibiotics.

The best way to avoid tick bites is to wear long sleeves and pants, apply insect repellent and remove any ticks on yourself with tweezers.

"Relevant to the threat level, people barely know about it," Broad said. "The reality is if it goes misdiagnosed it becomes a much bigger problem."