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| CONTACT| CONTACT
struggle with Lyme disease, Bart’s going home
Fenolio, left, gets help as he
walks down the hallway at A Grace… ( KAREN T. BORCHERS )
Fenolio still tires easily, needs a walker to get around and has
occasional memory lapses. He knows it
could take years for him to
overcome the devastating effects of chronic Lyme disease.
for a 70-year-old guy who had been told he was dying of Lou Gehrig’s
disease and couldn’t breathe on his
own or pick up a cell phone when I
saw him six months ago, Fenolio looks pretty darn good. And he is
“I’m just so lucky to have a family and
so many friends who could advocate for me,” he told me Thursday as
prepared to leave the San Jose nursing home where he has been
recovering since December. “I’ve lost
a lot of muscle mass — I’ve got
no buns — but I’m finally on the road to recovery.”
I told the story of the former San Jose State track star, classic-car
nut and golfer who contracted
Lyme disease from a tick bite but was
misdiagnosed with amyotrophic lateral sclerosis, an incurable illness.
The longtime owner of a Campbell tropical fish store was bitten by the
tick while walking his dog in Morgan
Hill seven years ago and began to
develop symptoms two years ago.
Only through the persistence of
Heidi, his wife of 46 years, and their scientist son and social-worker
was Bart given a series of Lyme tests that came back positive.
He says his doctors at Kaiser Permanente
insisted he had ALS even
though he began to improve with antibiotics, and he left Kaiser to get
disease, a bacterial illness spread by ticks, is the fastest-growing
infectious disease in the country,
with 28,921 confirmed cases and
6,277 probable cases reported in 2008.
First identified in
Connecticut in the 1970s, it still is not understood. Tests for Lyme
are notoriously unreliable,
and it can masquerade as Parkinson’s
disease or arthritis.
After I wrote about Fenolio’s case, I was
inundated with inquiries from people with similar stories and those
suspected they might have the disease. I have been referring them to
the California Lyme Disease
Association at www.lymedisease.org.
then the Fenolios, who retired to San Diego four years ago but came
back to the Bay Area to find a Lyme
specialist, have been living here,
Bart in a nursing home and Heidi with friends in Saratoga. They have
strong advocates for Lyme education.
“We have met so many people who were misdiagnosed,” Heidi said.
“There’s so much of it out there,” Bart added, “but people don’t
that would provide more money for research and testing for Lyme is
inching its way through Congress.
But advocates for patients with
chronic Lyme suffered a blow in April when a federal review panel
endorse the use of long-term antibiotics, saying that
treatment posed too great a risk of side effects.
decision infuriated Bart and Heidi because they are convinced that the
antibiotics he has been
taking since October saved his life.
withhold treatment when you’ve already got a death sentence?” Heidi
asked. She is confident that someday
Lyme will get the attention it
deserves. But for now, patients have to fight for treatment.
“I always say we’re just five years too early,” she said.
disease has taken its toll on the family financially as well as
physically. Medicare has picked up much of the
cost of Bart’s
treatment, but the Fenolios have spent about $100,000 of their savings.
been a real journey,” Heidi said, shaking her head. “I don’t even know
how to describe it. This week especially
has been just horrible for him
because he can’t wait to get home.”
At last, Bart’s wait is
over. This morning, he and Heidi are scheduled to fly to San Diego,
where their daughter
will meet them in Bart’s 1939 Ford woodie wagon. A
procession of woodies driven by members of the San
Diego Woodie club
will escort them home. Then Bart will be able to sit in his backyard by
his koi pond, feel
the ocean breezes, enjoy Heidi’s veal scaloppine and
sleep in his own bed for the first time in a year.
“It will be so good to get him home,” Heidi said. “Just to be able to
hold his hand during the night, I can’t even
Contact Patty Fisher at firstname.lastname@example.org or 408-920-5852.