Cindy Stoesser was diagnosed with Lymes's Disease 18 months ago using an IGeneX test after failing to diagnose the disease with FDA approved testing over the past 17 years. Her symptoms were so bad she had to hire a nanny to care for her children Sean, 10, Kyle 5, and Mackenzie 11.

Victims of potentially debilitating, tick-borne illness push to make Sonoma County residents, doctors more aware

CATHY BUSSEWITZ
THE PRESS DEMOCRAT

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.

"I got lost in my own laundry room," Stoesser said. "I found my phone in the refrigerator. I don't feel safe driving my kids to school, so I'm paying someone to take care of my kids."

That was a big change for a woman who used to dance in Zumba classes five times a week. At one point, Stoesser was prescribed five different anti-depressant drugs in the course of a couple of months.

Eventually she saw Dr. Moses Goldberg, a naturopathic doctor in Santa Rosa, who convinced her to take another test for Lyme disease, and for the "co-infections" that ticks sometimes carry, such as bartonella and erlichiosis.

Goldberg said that acute Lyme disease is recognized by the medical establishment, but chronic or long-lasting Lyme disease isn't recognized by many in the medical community. He wishes there were more "Lyme-literate" doctors in Sonoma County.

"The Lyme community is very galvanized because no one's taking care of them," Goldberg said.

Treatment of chronic cases of the disease, especially with a late diagnosis, involves high doses of strong antibiotics, often over the course of six to 18 months, he said.

Diagnostic challenges

In Stoesser's case, she had been tested for Lyme disease in the 1990s, but the test returned negative at that time. With Goldberg's help, Stoesser later learned that in addition to Lyme she had contracted co-infections, which created different antibodies in her blood and threw off the test.

Stausser's story echoes the travails of many who have contracted Lyme disease.

Jessamyn Kangas, 25 of Novato, developed symptoms of Lyme disease at age 18, but didn't get a diagnosis until recently. She missed the window to get effective treatment in the early stages and was bedridden for two years.

"It was so sad. I was a dancer, and I had to drop out of college," Kangas said. "It's taken all these things from me."

Janet Dix, 62, of Santa Rosa said she saw more than 40 doctors for severe exhaustion, light sensitivity, cognitive problems, memory loss, stiffness and pain before she got a positive diagnosis of Lyme disease and three co-infections. Along the way, many thought she was crazy.

"When somebody comes in with symptoms of all these diseases, they think that's way too many major diseases for one person to have," Dix said. "They wanted to put me away for a while."

She's feeling much better after years of treatment for Lyme and the co-infections; her husband is also infected with Lyme disease.

"I could have a big bonfire with all these medical records I have over here," Dix said.

Stoesser had a similar experience. When her left side went numb, she went to the hospital and was told she had a migraine and was sent home. She returned the next day and was admitted, but doctors couldn't find anything wrong with her. They took her husband out in the hall and suggested he admit her to a mental hospital. He didn't.

"When you get the rash, it's this strange feeling of relief, because it's like, I finally have proof that I have it," Stoesser said.

The diagnosis was the beginning of another long road for Stoesser. She has been on antibiotics for a year and a half. She submitted more than $100,000 in medical expense claims to her insurance company last year, paying $20,000 out of pocket, not including insurance premiums.

Her experience is typical of Lyme patients, but she's grateful that her family has the financial resources.

"The treatments are not easy, and they take time," Goldberg said.

Seeking solutions

Local Lyme disease patients trade notes about where to find effective treatment at a weekly support group led by Linda Berg in Sebastopol.

She and Thora Graves, a volunteer with the California Lyme Disease Association, have distributed pamphlets and brochures about Lyme disease, but she said they need help.

"We can do little booths here and there, but this is a much bigger problem that needs to be addressed with more education, because so many people have no idea what's happening," Graves said.

She recently stopped by Jack London State Historic Park to see whether visitors had access to tick information.

"I handed them tick cards, brochures, they were just desperate for information," Graves said. "There's all this information, but it's not getting out there."

Graves and other members of the Sebastopol group have been attending meetings of Marin/Sonoma Mosquito and Vector Control District, asking the district to do more to educate the public about tick-borne diseases.

The district said it distributes brochures at fairs and festivals, and has Lyme disease information on its website. It also is engaged in research with Sonoma State University and other institutions to determine the prevalence of the bacteria that causes Lyme disease, said Nizza Sequeira, public relations director.

But Lyme advocates have been showing up and asking the district to do more to educate the public about ticks, especially in schools. The district has an outreach program to teach children about mosquitoes and yellow jackets, and Lyme patients want them to add ticks to that curriculum.

Meanwhile, the state public health department is sponsoring a contest to encourage people to make a tick-bite prevention video on Youtube.

"The work that the advocates are doing in that regard is just terrific," Netherda said. "It's helpful, because not everybody listens to us, or gets the message from us or vector control."

Stoesser has said she wants to dedicate her life to helping prevent others from sharing her difficult experience.

"There's people everywhere that are going through this," Stoesser said. "I mean, it's an epidemic that's unknown."

You can reach Staff Writer Cathy Bussewitz at 521-5276 or cathy.bussewitz@pressdemocrat.com.

UPDATED: Please read and follow our commenting policy:
  • This is a family newspaper, please use a kind and respectful tone.
  • No profanity, hate speech or personal attacks. No off-topic remarks.
  • No disinformation about current events.
  • We will remove any comments — or commenters — that do not follow this commenting policy.
Send a letter to the editor