“The end result is it really makes you appreciate life.” – Karen
In 1980, Karen was sick for seven months with a relapsing disease doctors couldn’t identify. She recovered with some residual effects; mainly periodic arthritis. Decades later in 2006, she began waking every morning at 3 a.m. feeling as if her body was vibrating. Other strange sensations occurred including an episode of tachycardia that sent her to the emergency room. After appointments with 14 doctors who couldn’t diagnose her symptoms—that included fatigue, fibromyalgia, migraines, neuropathies and short term memory loss—Karen began her own research. And then she developed a bulls-eye rash. Considered evidence of Lyme disease, her rash wasn’t recognized and a lab test returned a negative result. Finally, in 2007, her blood was sent to a lab in Palo Alto for a test that included a California wild strain of the bacteria, and the result came back positive for Lyme disease.
According to Karen, Lyme damages the immune system, causes cognitive impairment, and can mimic mental illness. At one point, Karen had seven tick-borne diseases and experienced moments of feeling lost as if her “personality was gone”. With few resources available, she and a friend started a public support group in 2009 to share information, resources and offer emotional support. Currently the group is comprised of 150 people, with about 60 who meet twice a month in Santa Rosa. Over 5% of the group’s members are homeless and many members can’t find a primary care physician who accepts a Lyme case. One of the members of the support group, a devoted mother, lost her daughter Melissa to Lyme disease last month. She was only 32 years old. Sick since she was 20, Melissa was a pre-veterinary student at U.C. Davis, who had to drop out of school due to the severity of symptoms. Melissa was a healthy, happy, athletic person until Lyme disease, and it took years to finally find a doctor who would listen, properly diagnose, and treat her.
Not content to sit on the sidelines, Karen is now part of an activism group called Target Lyme who helped designate March as West Coast Lyme Disease Awareness month in Santa Rosa and Healdsburg. Through Target Lyme she is bringing awareness to tick season and how people can protect themselves. Tick season is year-round in California and March is prime time for the more highly infected nymphal tick—a baby tick whose size is comparable to a poppy seed and carries a higher rate of infection than adult ticks in California. To protect yourself, Karen recommends applying Repel brand’s lemon oil of eucalyptus directly on the skin and after a day spent outdoors, suggests putting all of your clothing, including socks, shoes and hat, in the clothes dryer on high heat for 15-20 minutes to kill any ticks.
After battling Lyme for 10 years with trips to the doctor every 4-6 weeks, Karen now sees her doctor every six months. Today she uses herbal remedies and needs a couple of prescribed medicines for her immune system. Although the disease’s effects will never go away completely, she is cognitively back on track and enjoys taking gentle yoga twice a week. With the worst of the physical pain behind her, she says “the end result is it really makes you appreciate life. I remember the day I stepped out onto my front walkway and I bounced down the steps and thought ‘I can walk!’,” a milestone she didn’t think she’d reach 10 years ago.
For information about Lyme disease and prevention, visit Target Lyme’s information table in Railroad Square this Saturday, March 19th from 10 AM to 3 PM. Look for the green ribbons and get the latest on tick bite prevention and take a look at real ticks (yes, they are dead).
The Lyme Aid Support Group meets the 2nd and 4th Wednesday of each month from 11:30 AM-1:00 PM, at the Unitarian Universalist Congregation: Glaser Center, Green Room at 547 Mendocino Ave. in Santa Rosa. No cost to attend.