Not long ago, Linda Goffinet was able to hold down one full-time nursing job and two part-time jobs. Now she can work no more than 10 hours a week, and even that's a struggle. She was also an active outdoor person who frequently backpacked, a pastime she can no longer enjoy.
At 43, she is one of a small but growing number of Californians who have Lyme disease, a debilitating and extremely painful illness of the nervous system and the joints that sometimes leads to heart problems and arthritis. It is caused by spirochete bacterium, Borrelia burgdorferi, which is transmitted to humans by the bite of a tick.
Goffinet, who lives on the Stanford University campus with her husband and five children, believes she was bitten while walking in the hills near the campus. Her story appears in the winter issue of Stanford Medicine, which is published three times a year by the Stanford University Medical Center. Goffinet said she wants others to know of her experience because it may help people with Lyme disease who have not been correctly diagnosed.
"Some of the doctors I saw had never even heard of Lyme disease," Goffinet said. "The few who knew about it didn't realize it could cause my symptoms (flulike fevers and aches, recurring headaches, excruciating pain in the knee, dizziness, lapses of memory and paralysis of the leg). Somehow, physicians need to become more informed about this disease so that they can diagnose it and treat it in time."
Last week Goffinet had a catheter inserted in her chest that she will use twice daily to administer large doses of penicillin to herself. She has been told the treatment will last for many months and that she may never be completely cured because the disease may be too advanced.
Stanford immunologist Dr. Gary Fathman said the infection can usually be treated effectively with antibiotics if it is diagnosed early.
Lyme disease, a nonfatal illness, was first described in the United States in 1975 by researchers from Yale University who were investigating a high incidence of what was thought to be juvenile rheumatoid arthritis in Old Lyme, Conn.
By 1984, about 1,500 cases had been confirmed in 24 states. But many physicians say that figure is low because of under-reporting and misdiagnosis. Ninety percent of the cases occurred in seven states--New Jersey, Massachusetts, Rhode Island, Connecticut, New York, Wisconsin and Michigan.
But the number is growing in California. Four cases were reported in 1983. By 1985, there were 74.
"We'll have more than 100 cases in 1986," predicted Robert Murray, a California Health Department epidemiologist, who is tallying the cases.
The offending insect--the Western black-legged tick or Ixodes pacificus-- is found in 50 of California's 58 counties, but most Lyme disease cases have been traced to four Northern California coastal counties--Humboldt, Mendocino, Sonoma and Marin--and to Nevada County in the Sierra. The tick thrives in wet conditions, although cases of the disease have been reported year-round.
Los Angeles and Orange counties have each reported two cases and San Diego County one.
"The tick will be in the foothills and in other wooded regions and brush regions around Los Angeles," said Eric Hughes, senior veterinarian in charge of disease investigation for the Los Angeles Health Services Department.
"We've recently collected blood samples from horses, dogs and coyotes and we're about to start analyzing them to see if we can find out where the tick is endemic."
The likelihood of getting the disease is much greater in the Northeast and Midwest, where 30% to 100% of the ticks can be carriers. (The ticks in those regions are called Ixodes dammini. )
Deer Carry Ticks
In California, about 4% of the tick population in any one county are carriers of Lyme disease, researchers say. Deer are the host of the tick in most areas.
Not all of those infected will be affected severely. Some will experience only transient symptoms. Stanford researchers are investigating the possibility of an "inherited predisposition" to develop Lyme arthritis, the most common long-term disability.
Diagnosis remains the biggest problem and is difficult because symptoms often vary.
Goffinet said she went to 13 doctors over a three-year period, and not one diagnosed the disease. Finally, after reading a newspaper article, she went to a San Francisco physician who specializes in treating Lyme disease and he confirmed her suspicions.
Goffinet said she did not have--or did not notice--a doughnut-shaped rash that often accompanies onset of the disease. Nor did she develop Bell's palsy, a form of facial paralysis and another common symptom. Also, her blood tests for antibodies to the bacterium were negative. Only about one-third of those infected have positive antibody tests, Murray of the state Health Department said.
Goffinet in Stage 2