Copyright Since September 11,
web site is
in no manner
affiliated with any Kaiser entity and the for profit Permanente
is granted to mirror this web site -
Please acknowledge where the material was obtained.
| ABOUT US | MCRC
understood and strangely controversial
illness that has been
the country since it was discovered in Connecticut in the 1970s. While
still rare in California, there were 28,921 confirmed cases and 6,277
probable cases in the United States in 2008, nearly twice as many as in
|Fisher:Learning about Lyme disease the hard way
San Jose Mercury News
By Patty Fisher
A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had
two months to live. Doctors advised his wife, Heidi, to take him home
and call a hospice. But Fenolio is proving the doctors wrong.
Instead of getting worse,
he's growing stronger each day, thanks to antibiotics. That's
he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme
disease, which is.
Lyme disease, a bacterial illness spread by ticks, is a poorly
But Lyme experts suspect there could be 10 times that many. That's
because when not treated immediately, Lyme can hide in the body for
years and then attack, masquerading as anything from heart disease to
arthritis to lupus. Folks might not even know they'd been bitten. And
the tests for Lyme disease are notoriously unreliable.
Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly
sees patients who have been misdiagnosed with chronic fatigue syndrome
or Parkinson's disease.
"I saw a new patient the other day who had weird symptoms and had gone
to the Mayo Clinic for a complete work-up," Stricker told me. "All they
could come up with was fibromyalgia," a syndrome characterized by
chronic pain, fatigue and depression. Stricker learned that the woman
had grown up on Cape Cod, where Lyme-carrying ticks are common.
"How could you miss that little tidbit of her history?" he wondered.
Bitten in Morgan Hill
Fenolio, 69, knows just how he contracted the disease. Six years ago a
healthy and hearty Fenolio was playing with his dog Cody near a
percolation pond in Morgan Hill and was bitten by a tick. When a
circular rash appeared around the bite, he went to the doctor. A Lyme
test came back negative, and he forgot all about it.
Three years later he retired from the tropical fish store —Dolphin Pet
Village — he and his sister owned in Campbell. He and his wife moved to
San Diego to be near their grandchildren and to enjoy playing lots of
But his golf game slowly deteriorated. He couldn't seem to grip the
club. Then, during a vacation in Hawaii, he was too weak to climb out
of the pool. His doctor told him he was just getting old. His wife
wasn't buying it.
"I said, 'This is not old age. My husband is disintegrating before my
eyes, and something's going on.' "
Their Kaiser Permanente internist referred them to a neurologist, who
diagnosed Lou Gehrig's disease. Then Fenolio's son remembered the tick
Fighting for treatment
A laboratory that specializes in Lyme tests confirmed his suspicion,
and a Lyme specialist in Redwood City prescribed a long-term course of
antibiotics. But the ordeal wasn't over. Although Fenolio began to
improve on antibiotics, his wife told me, Kaiser doctors wanted to
That's because the Infectious Disease Society of America still
recommends against extended treatment using antibiotics, and it casts
doubt on whether chronic Lyme disease exists at all, despite thousands
of documented cases. Because of the IDSA's position, health insurers
generally refuse to cover long-term antibiotics. In most states, though
not in California, doctors can lose their licenses just for treating
Dr. Sara Cody of the Santa Clara County Health Department cautioned
that Lyme disease is rare here, and Fenolio's case doesn't prove that
there's rampant misdiagnosis going on.
"What he is experiencing is tragic but not common," she said.
Dr. Jonathan Blum, an infectious disease specialist at Kaiser
Permanente Santa Clara, wouldn't discuss Fenolio's case. He confirmed
that Kaiser follows the IDSA protocols.
"Long-term antibiotics can cause significant side effects," he said,
"and should be used only if they are going to help the patient."
Fenolio's family is convinced that the antibiotics are helping. Today
he is in a San Jose nursing home, improving each day. He knows there
will be setbacks, but his wife hopes he'll be strong enough to go home
in a couple of months.
"I just wouldn't want anyone else to go through this nightmare," she
said. "If I had one of those diseases and was told there was no cure, I
would definitely want to be tested for Lyme."
In Copyright since 2000