Stan Gage never saw the tick that gave him Lyme disease more than 15 years ago.
The 32-year resident of Los Trancos Woods did notice a red bull’s-eye rash. But it was a couple of years later that he began having flu-like symptoms. Then excruciating pain in his large joints forced him to give up running on local trails.
“There was no swelling, no tenderness,” he says. “The joints just hurt like hell, and normal pain killers don’t help.”
Some 10 years later, Mr. Gage passed out a few times and had a heart block. Now he’s on a pacemaker, takes antibiotics every day, and is mostly free of symptoms.
“I’m pretty good,” he says. “I’ve had no recurrence, but I’ve been taking antibiotics every day since 2003.”
Mr. Gage — and other local residents who live with chronic Lyme disease — report huge frustrations with getting the disease diagnosed and treated.
Symptoms can be intermittent and variable, and may not totally match the official criteria, they say. And many doctors don’t believe in Lyme disease here, they grumble.
“I do not believe the tests currently out there detect Lyme disease effectively,” says Mr. Gage; he claims that current tests come in with a high rate of false negatives.
Mr. Gage finally got his Lyme disease confirmed by one of the top Lyme disease laboratories in the country, Igenex of Palo Alto. Now he sees what he calls an “LLD” (for Lyme-literate doctor) from Nevada City, who also practices in Palo Alto.
‘Hard to prove’
Dr. Mary Ann Carmack of Menlo Park, head of pediatrics at the Palo Alto Medical Foundation, agrees that diagnosis of Lyme disease, particularly chronic Lyme disease, is very controversial. “It is hard to prove,” she says. “The symptoms are vague and can be caused by other things.”Several messages emerge from the ordeals of Mr. Gage and other local residents afflicted with Lyme disease:
• Lyme disease is rare in this area; most ticks don’t carry it.
• Diagnosis of Lyme disease can be difficult and controversial.
• Early discovery is important to cure the disease.
• Preventing tick bites is even better.
‘Hidden epidemic’?
The state Legislature has recognized the importance of Lyme disease by declaring May as “Lyme Disease Awareness Month.”Lyme disease occurs worldwide and is a “hidden epidemic” in California, says Phyllis Mervine, president of the California Lyme Disease Association. It can affect the brain, the heart, joints and other organs.
Lyme disease is carried by a bacterium, Borrelia burgdorferi, and is transmitted to humans through the bite of infected black-legged ticks, according to the Centers for Disease Control Web site.
This is the tiny, pinhead-sized “deer tick” that brushes off grass and vegetation onto passing animals and people in wildlands and backyards. Even invisible nymph-stage ticks can transmit the disease without alerting the victim.
If the tick makes it into the skin, it may or may not create the classic bulls-eye rash. It sucks blood for a few weeks, may raise an itchy red welt, and eventually drops off.
The likelihood of contracting Lyme disease from a tick bite in this area is low. Only about 3 to 5 percent of ticks collected around the county were infected, according to Angela Rory, assistant vector ecologist with the San Mateo County Mosquito Abatement District. The district collects ticks from hiking trails around the county and tests them for Lyme disease.
Dr. Carmack says the clinic sees “vanishingly few” cases of Lyme disease. “It is very uncommon to see Lyme disease in this area,” she says. “If caught early, it is easily treatable with antibiotics.”
Prevention
“The important message is prevention,” says Dr. Carmack. “Try to not be bitten by a tick.”To avoid picking up ticks, Dr. Carmack recommends wearing light-colored clothes and spraying them with a repellent like DEET. After being out in tick country, Dr. Carmack urges people to inspect themselves and their children. “That’s probably the single most important message,” she says.
If a tick starts biting, Dr. Carmack says: “Don’t panic, but time is critical. It requires 32 to 76 hours for the infection to be transmitted.”
If you find a biting tick, grab it with tweezers close to the skin, and gently pull it out, Dr. Carmack advises. “Do not jerk or twist it; do not squeeze or crush a tick.” And don’t believe the folk tales about unscrewing it. Then disinfect your skin and wash your hands.
If symptoms occur, seek medical advice.
Early symptoms of Lyme disease include fever, headache, and the characteristic bulls-eye skin rash — although not everyone gets all symptoms. Left untreated, the infection can move to the joints, the heart and the nervous system, says the CDC.
There are some happy outcomes. Marie Nightingale of Los Trancos Woods contracted Lyme disease about 12 years ago, when she was 6. She spent two horrible years with treatment by intravenous antibiotics, says John Nightingale. “It was mostly lethargy, and all sorts of weird symptoms.”
By fourth grade, she was significantly better, although she still had ups and downs through eighth grade, Mr. Nightingale says.
Last week Marie completed her freshman year at the University of California at Davis.
INFORMATION
A Lyme disease support group meets the second Tuesday of every month, from 6 to 8 p.m., at El Camino Hospital in Mountain View. For information, call 800-216-5556. The San Mateo County Health Services Department also keeps watch on Lyme disease; call 573-2346 for information. The following Web sites carry information on ticks and Lyme disease:• Centers for Disease Control, www.CDC.gov
• California Lyme Disease Association (CALDA), Lymedisease.org
• San Mateo County Mosquito Abatement District, smcmad.org
• IGeneX Research Laboratories in Palo Alto, Igenex.com.
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