Woman's persistence pays off: Lyme disease finally diagnosed

The Arizona Republic - May. 10, 2005

How she copes with Lyme disease

NAME: Lisa Katz.

AGE: 44.

HOME: Scottsdale.

JOB: audiologist, currently on disability.

THE ISSUE: Katz has struggled with complications of Lyme disease, a tick-borne illness, for several years. If discovered and treated early with antibiotics, Lyme disease is curable. One early symptom of the disease is a bull's-eye-shaped rash around the tick-bite site, but not everyone has this. That's followed a few weeks later by joint pain. If not treated early, the disease can cause arthritis, heart problems and neurological damage. Katz isn't sure when she got the disease, but remembers a tick bite followed by a fever in 1989. After that, she experienced fatigue, headaches and joint pain, and went from doctor to doctor for years. "I was getting sicker and sicker, and part of my face was drooping. They thought I had meningitis." A Lyme disease test came back positive, but her doctor didn't believe she had it. Katz saw neurologists, rheumatologists and infectious-disease doctors, finally traveling to Lyme disease specialists in California and New York. She had intravenous antibiotics, penicillin shots and oral antibiotics. In 1999, she blacked out at work, and 2 1/2 years ago, she had to go on disability because of dizziness. She still has fatigue, short-term memory problems and neuropathy (pain in the extremities).

THE MOTIVATION: Katz's journey from doctor to doctor was frustrating. "It was hard to go from working all the time to doing nothing. I didn't want anybody to go through what I went through."

THE CHANGE: Two years ago, she started the Arizona Lyme Disease Association, with an online support group, ArizonaLyme, which has 125 members as well as a Scottsdale group that meets monthly to share information and provide emotional support. "It's probably too late for me to be cured, but I want to prevent other people from ending up like this," says Katz, who takes supplements to boost her immunity and attends physical therapy to manage her symptoms. "Yoga helps with the stress."

THE GAIN: The therapy has helped her to stay mobile. "Otherwise I would be in bed all the time," she says. And the support group has been rewarding. "Even if I help one person get to the right doctor or help them, it's worth it."

KATZ'S TIPS: "Part of the problem is that the Lyme disease tests are unreliable. And what's happening in Arizona is that people won't think to test for it." The disease is much less common here than in the Northeast, where it originated. Nineteen cases were reported to the Maricopa County Department of Public Health in 2004. Even when tests confirm Lyme disease, there is no gold standard for treatment, with some doctors relying on short-term antibiotics and others using longer-term treatment. "People with complicated neurological symptoms should be treated for Lyme disease with a battery of tests," Katz says. She also recommends finding a doctor who is "Lyme-literate." For information on the support group, contact Katz at ArizonaLyme@aol.com.

DETAILS: International Lyme and Associated Diseases, www.ilads.org or 1-(301)-263-1080.

- Mary Beth Faller