FOR T WO YEARS, Corte Madera resident Kirsten Stein suf- fered from symptoms no doctor could explain. After
becoming violently ill over Labor Day
2010 with what seemed like the flu,
Stein experienced Bell’s palsy (
causing half her face to droop); tingling in
her hands, feet and head; and short-term memory issues. For several
months, her grip was so impaired she
had a hard time holding a pencil.
Before the “flu,” Stein had
been a typical active Marin resident. She did CrossFit two to three
times a week. She regularly ran and
mountain-biked on Mount Tamalpais.
But after getting sick, she had to give
up working, exercise and volunteering
at her children’s school.
Her doctors ordered an MRI,
allergy tests and blood work. Nothing
showed up in the results. One doctor
told her she was stressed out. Another
said she was allergic to spinach. Stein,
49, grew so frustrated that at one
point, she created an alphabetical list
of medical specialties — starting with A for allergist and C for cardiologist — and decided to visit a doctor in every field until someone could tell
her what was wrong. It was only when she took her daughter to see a new
pediatrician in San Francisco, Dr. Michael Cantwell, that she finally got
a diagnosis. He turned to her and said, “You don’t look so good.” After she
described her symptoms, he ordered a Lyme disease test for her.
By then, Stein had been sick for
more than two years and seen 14 doctors. When the test came back positive
for Borrelia burgdorferi, the bacteria
that causes Lyme disease, she was
elated. Even better, she had tested
positive for the one narrow strain of
Borrelia that the Centers for Disease
Control consider valid for Lyme. “I
thought, not only do I have it, but my
blood shows I have it, and I’m not
crazy,” says Stein.
Stein’s experience goes to the root
of what makes Lyme so challenging: it’s a complex and controversial
disease, and one that California doctors aren’t always looking for when
patients arrive with strange symptoms. It’s also nearly impossible to tell
how many cases of it we have in Marin.
According to Marin County’s
Department of Health and Human
Services, there were no confirmed
cases of Lyme in Marin in 2017 and
only two cases in 2016. This makes
Marin a “low-incidence” county. And
yet when I asked around among my
friends, trying to find Lyme sufferers for this story, at least 10 people
came for ward within 24 hours to speak about their experiences.
Raphael Stricker, M.D., past president of the International Lyme and
Associated Diseases Society — and a San Francisco internist with more
than 4,000 Lyme patients in his practice — points to a similar pattern
throughout California. “There’s a huge disconnect there,” he says. “There
Diagnosing Lyme disease is a challenging affair. The answer
to how many cases we have here in Marin is complicated.
BY LAURA HILGERS