SACRAMENTO, Calif.
— She wouldn't use the wheelchair. Anything but that. The
bulky walker was bad enough, but at least she could retain a
semblance of her former mobility.
Yeah, Pamela O'Kane was determined —
stubbornly so — to get back to normal life after another
stay at the hospital. This one lasted 10 days in the late
summer of 2007, and doctors still had no definitive diagnosis
to explain and treat the uncontrolled, episodic spasms in her
legs and arms, the partial facial paralysis, the weakening of
her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at
California State University, Sacramento, suspected that she
had somehow contracted Lyme disease — a potentially
debilitating infection transmitted by ticks — at some point
in 2006. All the symptoms were there, and her Lyme disease
specialist detected two co-infections that usually accompany
the disease. But three times the test for Lyme disease came
back negative.
Which frustrated O'Kane to no end. Here was
this perfectly healthy woman — a national-qualifying
age-group triathlete, no less — rendered nearly an invalid
who could barely stand up to conduct her teacher education
classes without succumbing to fatigue, breathing problems and
spasms.
Specialists had tested her for a medical
dictionary's worth of maladies. The spinal tap for Lou
Gehrig's disease came back negative, as did the scan for
multiple sclerosis. She saw her gynecologist for a cervical
cancer test, a pulmonary specialist for a lung cancer
screening, neurologists for all types of central nervous
system disorders.
Negative, negative, negative.
One doctor even suggested anti-depressants,
thinking O'Kane was suffering from psychological problems.
O'Kane, however, knew the problem was in her central nervous
system, not "all in my head."
Still, just before this latest hospital
discharge, the neurologist at the hospital told O'Kane's
mother, Virginia Wilbur, and her older sister Denise Wilbur
DeTrano that O'Kane's condition would only worsen, and a
wheelchair was advisable.
"They told me I was going to be
disabled," O'Kane recalls. "They said it would get
progressively worse."
O'Kane had other ideas. During the hospital
stay, she had read a story in The (Sacramento, Calif.) Bee
newspaper about women climbing Half Dome, that 2,000-foot-high
granite monolith in Yosemite, and she vowed to do it herself
within a year.
"Pamela, you can't even walk across the
hallway," Denise told her. "What makes you think you
can climb Half Dome?"
"I will," O'Kane said tersely.
A year later, she and Denise had reached the
goal, arms raised atop the granite slab. Just for good
measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication
and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism
and commit fully to a controversial Lyme disease treatment
plan that she had hesitated to enter because she technically
had never been diagnosed.
It involved long-term antibiotic treatment
— open-ended, depending on her response to it — through an
IV line implanted in her left arm. This goes against standard
treatment recommended by three medical organizations: the
Infectious Disease Society of America, the Centers for Disease
Control and Prevention, and the American Academy of Neurology.
In a 2007 study published in the journal
Neurology, researchers found that for patients with
neuroborreliosis (Lyme disease that affects the nervous
system), the treatment was effective only during a 14- to
28-day window. Long-term use of antibiotics has been linked to
side effects such as blood clots, bloodstream infections and
diarrhea.
Yet many Lyme patients (and those, like
O'Kane, who exhibited symptoms but were not officially
diagnosed) report that a six- to eight-month regimen of
antibiotics helped them. And San Francisco physician Raphael
Stricker, who has treated 1,800 Lyme disease patients, says
he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms
based on persistent infection, unless they're treated
long-term with antibiotics, they aren't going to get
better," says Stricker, who did not treat O'Kane.
"There is a lot of evidence from animal and human studies
that there is persistence in infection (with Lyme), and the
only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of
antibiotics could be harmful, but she also knew that it was
effective.
She underwent six months of treatment from
January to July 2007. While taking the drug, she still had
hand and facial tremors and had yet to gain back weight, but
the severity was greatly diminished, and O'Kane could go about
teaching and participating in triathlons.
What gnawed at her, though, was the fact
that she'd never been diagnosed with Lyme. All those negative
tests couldn't be wrong, could they?
That summer, she says, "I decided to
take myself off it and detox. I wanted to try this on my own.
Everyone told me, no, no, no. But I said, 'This is it.'"
About two weeks off the medication, she
called her sister.
"She said that her feet were turning in
— foot drop like people with cerebral palsy have,"
DeTrano recalls. "Fifteen minutes later, she calls me and
says, 'I can't walk.' I had to go and carry her into the
ER."
After that prolonged hospital stay, the one
in which neurologists said she might be permanently disabled,
O'Kane was eager to go back on antibiotics. She recalls being
in the Lyme specialist's office, and her feet were spastically
moving so much "it was like I was tap-dancing on the
floor."
Even with just the initial dose of
antibiotics coursing through her system, O'Kane said she felt
better. She tossed aside the walker and never used it again.
Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if
not all the weight she lost. Still, through rehab with a
personal trainer that includes weight training, O'Kane has 12
pounds of muscle mass, according to her latest hydrostatic
weight test.
Ironically, after feeling better, O'Kane
finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker
says. "The commercial testing for Lyme is, in a word,
terrible. They miss more than half the cases. Compare that to
the sensitivity of AIDS testing, which is 99.5 percent
(accurate). The tendency is for doctors to say, 'I guess you
don't have Lyme disease. It must be something else.'"
O'Kane just seems happy to have finally
cleared the major health hurdle. Now back to running
seven-minute miles and churning on the bike, O'Kane believes
exercise has hastened her recovery. But she admits that she
still has problems, episodic tremors mostly.
"It's like somebody who suffers a
stroke and recovers, but only to a certain point," she
says.
She's learned to deal with the new normal.
"I seem to have a high sensitivity for
odors," she says, explaining her current state of health.
"If somebody's mowing their lawn, I'll start to moan.
"It's strange, I know. And changes in
temperature, going from really hot to really cold will set off
facial tics and moaning.
"When I first started getting back to
triathlon, getting in the water, I'd start to tremor. Every
morning, just putting my hands under the water to wash
blueberries, it'll set off the shakes. It's embarrassing, but
I've learned to cope."
———
MORE INFO
—What causes Lyme disease: It is
transmitted by infected ticks carrying the bacterium
spirochete. The ticks attach to human skin and feed on the
blood supply.
—Early symptoms: Mild flu-like symptoms,
usually accompanied by a red, expanding skin rash. Turns into
chills, fever, headaches, swollen lymph nodes, muscle and
joint pain, fatigue and heart irregularities. The rash can
appear up to 30 days after the bite. Some patients report
never finding a rash.
—Long-term symptoms: Arthritis and central
nervous system disruption that can result in tremors and
spasms, chronic fatigue, facial paralysis, numbness and
tingling in the limbs, inability to concentrate.
—How to avoid Lyme disease: Stay in the
middle of trails, avoiding grassy areas and contact with logs,
tree trunks and fallen branches in forests. Tuck your pants
into boots or socks and your shirt into pants. Use a
repellent, such as DEET, made to combat ticks. Check yourself
thoroughly immediately after hiking and up to three days
afterward.
—How to remove ticks: Using tweezers,
grasp the tick's mouthparts as close to the skin as possible
and gently pull the tick straight out. Wash your hands and the
bite site with soap and water. Apply antiseptic to the site.
—According to the Centers for Disease
Control and Prevention, California's Lyme disease cases
amounted in 2007 to only 0.2 per 100,000 residents. The
disease is most prevalent on the East Coast but has been
detected in 56 of California's 58 counties.
Source: California Department of Public
Health, Division of Communicable Disease Control