Oregon Health Care Town Hall
"For many years I was a Kaiser member but was forced to change health
plans when the infectious diseases clinicians at Kaiser flatly refused
me a Lyme disease diagnosis."
Full Story
Kaiser refuses to
treat, family pays - By Emilie Crofton - After Kaiser stated that
Alyssa's health problems were not due to Lyme disease, the Moris pursued
other channels, knowing in their hearts that something else was causing
their daughter's medical condition. Something was wrong, and they were
determined to find the cause.
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Redlands Daily News
Tiffany Smith was an average teenager, singing, practicing the piano
and playing tennis at
Arrowhead Christian Academy, when a bite from a tick five years ago
changed her life.
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Marin Independent Journal
In 1995, when she was living in San Rafael, Katherine Renfield was
awakened by a tick bite on the back of her leg.
A bulls-eye rash developed soon after. Her internist diagnosed her as
having Lyme disease . She took a low dose of the antibiotic Doxycycline
for two weeks, and she assumed that would be the end of it.
Full Story
Alameda Times-Star
A steep drop in sales, attributed to worries about side effects, led the
only manufacturer of Lyme vaccine recently to cease production of the
inoculation.
While health experts in California said the preventive tool was used
infrequently locally, the vaccine's demise may also be a sign of
escalating, but unwarranted concerns, over the health effects of
vaccines, said Dr. Henry Shinefield, the co-director of Kaiser
Permanente's Vaccine Study Center in Oakland.
Some individuals reported that they experienced joint aches and muscle
pain after getting the Lyme disease vaccine, and numerous lawsuits were
filed against manufacturer GlaxoSmithKline. But large-scale studies
found no untoward health effects from the vaccine, Shinefield said.
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Fisher: Learning about Lyme disease the hard way
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 because 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
understood and strangely controversial illness that has been sweeping
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
1994.
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
golf.
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
bite.
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
discontinue them.
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
chronic Lyme.
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."
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USA Today
The first confirmed case of tick-borne Lyme disease caught in Southern
California - at Cucamonga Peak - has been reported by the San Bernardino
County Public Health Department.
Full Story
The Enterprise
A Calaveras County couple says their lives as victims refute the
number one Lyme disease myth that there
is no such thing as chronic Lyme disease. Their experiences with the
disease demonstrate typical and
worst-case scenarios that are familiar to many who become caught in the
debate that surrounds the
controversial ailment, say Rick and Ricki Barasingha (not their real
names), long-term sufferers of the disease.
Full Story
San Diego Union-Tribune
Fry, 49, was seen at Kaiser Permanente by a physician's assistant who
ordered a blood test for Lyme disease antibodies. Even though the test
was negative, the Poway resident was given a 30-day prescription for
antibiotics and now feels fine. Fry is sure he had Lyme disease.
Full Story
Press Democrat
"Part of the increase in Lyme disease may be explained by new reporting
standards adopted last year. Both laboratories and physicians are now
required to report positive blood tests, said Dr. Gary Green, an
infectious disease specialist at Kaiser Permanente Medical Center in
Santa Rosa."
Full Story
Chico Enterprise-Record
Le is chair for infectious diseases at Kaiser Medical Center in Santa
Rosa. Sonoma County and also Butte, Humboldt, Mendocino and San Diego
counties have reported most of the state's Lyme disease cases over the
last few years. Butte County leads the state, with 89 cases since 1996.
Humboldt is second, with 60 cases in that period, followed by Sonoma
with 54, San Diego with 32 and Mendocino with 29.
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