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by JANET COOK
News staff writer
August 16, 2006
In 2002 and 2003, Talia Hinman was a
rising star at Hood River Valley High School. During her freshman and
sophomore years, as a pitcher on the softball team, she dominated the
Intermountain Conference as well as the sports page headlines in the
Hood River News. “Fireball pitcher” and “beyond her years” were the
phrases used again and again to describe her. She consistently pitched
shutouts for the Eagles and was always among the team’s top three
hitters.
In 2003, the HRV softball team earned its first playoff win since 1998
with Hinman at the helm, and hopes were high for the next season,
Hinman’s junior year.
But by the time softball season rolled around in 2004, Hinman was
fighting what she thought was a lingering flu bug. She tried hard to
make it to every practice, but she had little strength. Her head ached
continually, day and night. She couldn’t keep food down and began
losing weight. Often, she would miss school and sleep all day but drag
herself to practice.
Talia Hinman works at her parents’
cherry packing facility last month (above). Below, in a file photo, is
Hinman at the height of her prowess as a pitcher for the Hood River
Valley High School softball team in 2003, before she became ill with
Lyme.
Hinman began what would become a
months-long odyssey of doctor appointments. Her Hood River family
physician ruled out mononucleosis. Hinman had CT scans and an MRI. A
series of specialists she was referred to could tell her only that she
had some kind of infection, but they didn’t know what it was or how to
treat it. A few suggested that she seek psychiatric help.
At school and among her fellow softball players, rumors began to fly
that Hinman had a drug problem.
“The coach called a meeting with everyone on the team — except me — to
talk about how to confront me about my meth addiction,” Hinman said.
The athletic director asked her to take a drug test, which she
voluntarily did.
Hinman would have been angry, except by that point she was too sick to
really care. At her pre-season physical in March, Hinman had weighed
147 pounds. By May, she weighed 110.
“That’s why they thought it had to be meth,” Hinman said. “I looked
like a skeleton.”
Talia’s mother, Melinda, was beside herself as she dragged her
daughter to specialist after specialist who couldn’t offer them any
answers.
“This was a girl who went from being a TAG (Talented and Gifted)
student and very athletic to someone who could barely walk,” Melinda
said. A few months into her daughter’s illness, Melinda read an
article in Newsweek magazine about Lyme disease, an illness caused by
a tick-borne bacterium.
“It described Talia’s symptoms so perfectly,” Melinda recalled. After
reading the article, she also remembered an incident from a few years
prior when the family had taken in an injured owl they’d found in the
woods. Talia had nursed the owl, whose wing was broken, in the family
kitchen for several days before it finally died.
When Melinda Hinman buried the owl in the backyard, she saw “lots of
tiny deer ticks” on it. But she never gave it another thought — until
she read the Newsweek story.
Melinda Hinman immediately began researching Lyme disease online and
found the name of a San Francisco doctor who treats patients suffering
from Lyme disease. Within a month, Talia had been diagnosed with Lyme
disease and started on antibiotics.
That was a year and a half ago. She’s been on continual antibiotic
treatment ever since, although now she’s tapered to taking them one
week each month.
“I feel 110 percent,” Hinman said. “I feel better than I did before I
got sick.” But it’s been a long, difficult road for the 19-year-old.
She completed much of her junior and senior years of high school from
her bed at home — some of it through a mental fog that made it
difficult to concentrate on even a single math problem or a sentence
from a book. She missed out on potential college career-making
athletic seasons. And most of the friends she’d grown up with
“basically disowned” her, she says.
Even after she was diagnosed with Lyme disease, according to Hinman,
many people — including those involved with the softball program at
HRVHS — thought it was “just a cover for my drug problem.” (Hinman
credits HRVHS principal Steve Fisk and guidance counselor Joanne
Pollack with supporting her “100 percent” throughout her ordeal.)
Mary Jane Heppe, front row left,
Rosemarie Carnese, center, and Talia Hinman, front row right, all
credit support from loved ones for helping them survive Lyme disease.
Back row, left to right, are Steve Heppe, Joel Spinhirne (Carnese’s
husband) and Melinda Hinman.
Talia Hinman’s story is at once unique
and universal for those suffering from Lyme. The disease has emerged
as one of the most controversial topics in medicine — so much so that
the ongoing debate about both the nature and threat of it is often
referred to as the “Lyme Wars.”
Lyme disease (known also as borreliosis from the bacteria, Borrelia
burgdorferi, that causes it) has been on the medical radar in Europe
for a century or more, but it came to the attention of doctors in the
United States in the mid-1970s when an unusually high incidence of
arthritis was reported near Lyme, Conn. Eventually researchers pinned
the arthritis and other common symptoms on bacteria carried by ticks
and dubbed it Lyme disease.
Since then, Lyme disease cases have been reported in every state
except Montana — and they’re on the rise. The U.S. Centers for Disease
Control and Prevention logged 23,168 cases in 2005, up from 19,804 the
year before. And the CDC estimates the actual number of Lyme cases is
much higher — perhaps as much as 15 times or more higher — due to
underreporting and misdiagnosis.
Those two phenomena are big players in the Lyme controversy. In its
classic form, Lyme infection causes flu-like symptoms — such as
headache, muscle aches and fatigue — and a bulls-eye rash days to
weeks after the tick bite. But some people never get a rash, or never
notice it.
If Lyme disease is suspected at this early stage, it can usually be
cured with several weeks of antibiotic treatment.
But many patients, like Talia Hinman, brush off early signs (she never
had a rash) and the bacteria can begin to cause more severe health
problems. Infected people may develop joint pain and heart-rhythm
problems. If the bacteria continue to survive and go undetected, a
host of often-severe problems can arise, including arthritis, extreme
fatigue, nerve disorders, cognition problems and personality changes.
At nearly every stage, the symptoms mimic those of other ailments —
including migraines, chronic fatigue syndrome, fibromyalgia,
arthritis, lupus, and multiple sclerosis — and are often diagnosed as
such. Some medical professionals have begun referring to Lyme disease
as the “new ‘great imitator’” — a term once used to describe syphilis
and its psychiatric effects. (Syphilis is caused by a so-called
spirochetal bacteria, as is Lyme.)
At the very the heart of the Lyme controversy is the fact that there
is no test that unequivocally identifies the presence or absence of
infection.
Along with clinically observable symptoms, the CDC recommends a
two-stage testing process that measures the body’s production of
antibodies to the Lyme disease bacterium. But the CDC also notes that
both false-positive and false-negative results can occur from these
tests.
The Oregon Public Health Division requires a patient to have a
physician-documented rash and a positive blood test in order to have a
“confirmed” case of Lyme disease.
Susan Donnelly, communicable disease nurse at the Hood River County
Health Department, expressed frustration with the narrow reporting
definition.
“They’re real sticklers,” she said. “If there isn’t a
doctor-documented (bulls-eye rash) and a positive serology, it can
only be considered a presumptive case.” According to Donnelly, the
county health department had one confirmed case of Lyme disease in
2005, and has had none so far this year. But Donnelly says she’s aware
of local cases where a patient lacked either a positive blood test or
the rash but she and other health care workers “knew it was Lyme.”
According to the CDC, 19 cases of Lyme disease were reported statewide
in 2005.
Those statistics, and the reporting criteria, frustrate Hood River
resident Rosemarie Carnese. She was diagnosed with Lyme disease in
2001 after more than 10 years of compounding health problems that
forced her to quit her beloved — and lucrative — career as a network
engineer. During that decade-plus, she was diagnosed with ailments
ranging from irritable bowel syndrome to fibromyalgia to somatoform
disorder. At the suggestion of doctors, she sought psychiatric help at
various times.
“Every psychiatrist I saw said I had a physical problem and they
couldn’t help me,” Carnese said. Chronic debilitating joint pain,
extreme fatigue, sleep and cognitive problems were constants for
Carnese. Even since her diagnosis, she’s battled these and other
health problems, resulting in several hospitalizations.
“My case has been harder to treat because it went undiagnosed for so
long,” Carnese said. She has sought and received treatment for Lyme
disease in New York, Maryland and Nevada. For the last several years
she has been under the care of Dr. Steve Harris, a California
physician who says he’s treated nearly 100 patients with Lyme disease
from Oregon over the past six years — 20 from Hood River.
Under Harris’s recommendation, Carnese is currently taking a break
from antibiotic treatment to undergo a course of anti-malarial
medication, with the aim of treating “co-infections” of Lyme.
“I’ve recovered to about 65 percent,” Carnese said. She is still
unable to work, and continues to have difficulty with memory. She
knows she will never return to her career at anywhere near the level
she was.
“Hi-tech moves fast if you’re out of the loop,” Carnese said. “All I
can do right now is hope I can recover to 85-90 percent in a couple of
years and still work in a project management or business consultant
role.” She knows even that might be optimistic; Carnese still has so
little stamina that she rarely can tolerate more than a few hours a
day of what she calls “normal activity.”
Carnese and fellow Lyme disease sufferer Mary Jane Heppe have joined
together to form the Mid-Columbia Health Alliance. The organization
will provide support, information and resources for people suffering
from Lyme disease. Carnese and Heppe also want to be able to lobby on
behalf of Lyme sufferers and doctors who treat it.
“Our main gist, our goal, is to educate,” said Heppe, who was
diagnosed with Lyme in 2005 after several years of misdiagnoses and
spiraling health and mental problems. She has been on continual
antibiotic treatment for almost a year and a half (she also is a
patient of Dr. Steve Harris) and says she feels nearly as well as she
did before she became ill.
Carnese and Heppe are working to create a database of Lyme disease
sufferers and their symptoms and treatments. They also have reams of
information about nearly every aspect of Lyme, from the biology of the
bacteria to political efforts to raise awareness of the disease.
“We want to stop some of the suffering if possible,” Heppe said.
Talia Hinman and her mom, Melinda, support the effort and are
providing Carnese and Heppe with all the information from her case —
which continues as the Hinmans deal with the financial repercussions
of Talia’s illness and treatment.
But Talia is just relishing having her health back. She’s been working
long days helping her parents with their orchard — and loving every
minute of it.
“This is the first summer I’ve had in three years,” she said.
For information about the Mid-Columbia Health Alliance, contact
Rosemarie Carnese at (541) 354-3763 or by e-mail at
RCarnese@gorge.net. |
