Her symptoms started with a high fever and flu-like symptoms. Then came creeping numbness, tingling and constant headaches.
For more than a decade, doctors told Cindy Stoesser, 50, of Santa Rosa that she had multiple sclerosis, but she thought they were wrong.
Then one morning Stoesser was in her yard while her children were inside the house and she felt the left side of her chin go numb. She soon lost feeling in her throat, and then the entire left side of her body.
"I was in tears, I'm scared to death about what's happening, and I'm trying to find someone to help me," Stoesser said.
A few months after that episode, and after more than 15 years of dealing with symptoms that left her intermittently bedridden and unable to care for her children, Stoesser was diagnosed with Lyme disease. It is an infectious disease carried by certain kinds of ticks that are common in the dense foliage of the North Coast.
And like many Lyme patients, Stoesser experienced a long, circuitous route to a diagnosis.
She had pneumonia a dozen times. She had root canals. She was given cortisone injections in her spine for a presumed pinched nerve. When she reported having severe abdominal pain, doctors removed her appendix. They even recommended removing her uterus at one point, but that's where she drew the line.
Stoesser is one of a growing number of local Lyme disease patients who are pushing for more awareness and treatment of the disease at a time when the national infection rate is growing.
Since 1995, the number of annual reported Lyme disease cases nationwide has nearly tripled from 10,000 to about 30,000, according to the California Department of Public Health. Nationwide, the rate of new cases of Lyme is similar to that of AIDS, according to data from the Centers for Disease Control.
Local advocates are trying to spread the word that Lyme disease is a stealthy infection that often goes undetected, even while bringing sometimes-devastating effects.
The western black-legged tick, also known as the deer tick, can carry Lyme disease and has been found in nearly all counties in California. And Lyme disease in California has been most commonly reported in humid coastal areas such as the North Coast and on the slopes of the western Sierra Nevada, according to the California Department of Public Health.
In Sonoma County, an average of nine new Lyme disease cases were confirmed each year from 2005 to 2009, according to the county Public Health Division.
But some believe the rate could be much higher. Fewer than 50 percent of Lyme disease patients develop the characteristic redness of a tick bite, or remember being bitten, according to the International Lyme and Associated Diseases Society. And the disease is called the "great mimicker" because it shares symptoms with conditions like multiple sclerosis and Lou Gehrig's disease.
How lyme is spread
Lyme disease as an infectious disease caused by a bacteria called a spirochete, which can be contracted when a tick infected with the bacteria feeds on humans. People are most commonly exposed to Lyme disease when bitten by the immature "nymphal" tick, which is active in the spring and early summer.
"In California, people are at risk from Lyme disease mostly through hiking and recreational activities," said Anne Kjemtrup, research scientist with the vector-borne disease section of the state Department of Public Health."Though there are some communities in coastal areas where they've built their homes right where the ticks are."
Depending on the county, as many as 2 to 30 percent of nymphal western black-legged ticks in California are infected with the bacteria that causes Lyme disease, and the prevalance is high in Sonoma County, Kjemtrup said.
"The nymphal ticks are much more tiny, so they frequently can attach to someone who's hiking or out in the grasses and go unnoticed," said Dr. Mark Netherda, interim public health officer for Sonoma County.
"Even if that tick carried Lyme disease, if you get it off of you in a short period of time, up to 24 hours it's believed, it's unlikely that it will transmit Lyme disease."
Check after hiking
That's why it's so important to check for ticks on the body and scalp after hiking. Netherda said ticks can get onto shoes and climb up a pant leg, so he recommends tucking pants into socks and wearing long sleeves while out in the woods and grassy areas.
"I know that sounds uncomfortable, but it's certainly not as uncomfortable as a tick bite or Lyme disease," Netherda said.
Lyme disease starts like a mild flu-like illness that can develop into severe chronic health problems over time, according to the state health department. If left untreated, patients can develop arthritis or signs of nervous system problems. It also can spread to the brain, causing symptoms of mental problems.
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