Ticked off: Bend teen,
family fight lyme disease battle
Hurdles
have come on many fronts, from skeptical doctors to balking health insurers,
as bills mount.
by Barney Lerten
Bend.com
Reference Code: AR-11507
15 September 2003
In a perfect world,
all mothers and teen-age daughters would have the close ties evident between
Theresa Denham of Bend and her 16-year-old, Ashley. But they wouldn’t
have to go through a special brand of Hell on Earth to get there: a horrifying
roller-coaster ride full of unexplained illnesses, missed or misdiagnoses,
and a mystery whose solution, though welcome, hasn’t really solved
anything, especially in the eyes of a reluctant health insurer.
The path that starts
with an innocent camping trip to Cultus Lake a decade ago and winds through
the mysteries of family heartache, financial nightmare and medical controversy
has two constant touchstones, for Marty and Theresa Denham and their little
girl.
Two four-letter words.
Both start with ’L’
and end with ’E.’ Love, and Lyme—as in Lyme disease.
And just this month,
Theresa Denham and her family got the most ironic news of all, one that
confirmed years of rising suspicions in her own mind, about her own fatigue,
pain, headaches and some neurological problems.
That’s right:
She has Lyme disease, too. She probably got it on the same camping trip.
“So we both have
Lyme, and both diagnosed by different doctors,” the mother said. “Weird,
huh? Guess those who camp together, get Lyme together.”
Just about everyone
has heard at least a little bit about Lyme disease, a tick-born illness
that’s on the rise around the country and has reached every state.
But beside the typical preventive tips—wear long-sleeved shirts and
long pants in the woods, use a repellant that contains premetherin or DEET,
check for ticks which can be as small as a pin head—few are aware of
the potential, long-term, devastating variety of illnesses that can result
from it, and how few doctors can trace those symptoms back to their root
cause.
According to the Centers
for Disease Control, the reported cases of Lyme disease have nearly doubled
in the past dozen years or so, to almost 18,000 in 2000, the last year for
full records, which included 13 cases in Oregon. For surveillance purposes
one must have 5 lyme-specific bands on the tests. However, they could have
lyme with clinical symptoms and fewer bands. But the actual incidents may
be about 10 times higher than that, CDC researcher Joseph Piesman told People
magazine earlier this year. The vast majority of those cases have occurred
in the Northeast and Midwest.
’Post-Lyme’
symptoms mimic other illnesses
Lyme disease is rarely
fatal, but the long-term effects have become the subject of a growing debate.
Many doctors believe the tick-borne spirochete that causes Lyme is quickly
killed by medication, but many patients report symptoms ranging from arthritis
to irregular heartbeat, memory loss and motor-skill problems long after
the standard 2- to 4-week antibiotic treatment regimen. Some researchers
believe Lyme disease can linger as a chronic illness in possibly 10 percent
of the supposedly “cured” patients.
So-called “post-Lyme,”
“chronic Lyme” or “late-stage Lyme” disease brings on
a host of such symptoms that often are mistaken for other diseases—something
the Denhams know all too well.
In the past 10 years,
Ashley has suffered a variety of medical woes. The summary from a fund-raising
flyer posted at Bend’s Jamba Juice, where she works, includes arthritis,
seizures, congestive heart failure, chronic fatigue syndrome, fibromyalgia,
memory loss, a year in a wheelchair due to connective tissue damage, weakness
and neurological problems.
Once she began seeing
an East Coast specialist and getting treatment—at the family’s
expense—she began to improve, and was able to return to Mountain View
High School, joining the equestrian team. But then, in June, Cigna, the
insurance company for Intel, her father’s employer, decided it would
stop paying for the antibiotic treatment.
The pain issues over
the years have meant some bouts of home-schooling, and the teen is being
tutored again this fall, having started physical rehabilitation.
Ashley remembers the
tick bite, and a body rash that appeared later. That was the start of the
troubles. Days later, her mom took her to a doctor, who asked if the family
had visited the East Coast because,
he said, “we don’t have Lyme in Oregon.” Instead, he figured
it was the flu.
“I lost my appetite,”
Ashley said. She ran high fevers, had severe headaches, became lethargic,
developed asthma and sinus infections, resulting in numerous hospital trips.
Her mother recalled. “I couldn’t get her out of bed. She was crabby,
whereas before she was a people person. She became almost autistic
“Lyme disease
is a very, very difficult diagnosis to make,” Theresa Denham said.
“Lots of people who have Lyme are being diagnosed as not Lyme, by doctors
who don’t know better. Some doctors here still insist: ’Oh, no,
there’s no Lyme disease here.’”
The mom still recalls
how one doctor told her, “I don’t believe there’s any Lyme
disease in Oregon, but I’ll humor you.”
Depression diagnosis,
home-schooling and frustration
The fevers eventually
subsided, but then came severe pain in various parts of her body. Eventually,
an orthopedic specialist, unable to determine what was wrong, surmised there
might be depression or abuse. And over the years, the once-strong student
began having learning problems.
Ashley was home-schooled
in the fifth, seventh and eighth grades. “I couldn’t keep up (in
school), couldn’t remember things,” she said. “The teachers
thought I was not paying attention, or daydreaming.”
Six years ago, she
suffered a serious jaw injury when she fell off her bike, having lost consciousness.
There were blackouts and dizzy spells. In 1999, doctors found she had congestive
heart failure, from a rapid heartbeat. The girl’s efforts to do her
beloved horse shows and ice skating suffered due to lack of stamina, and
occasional seizures.
Before they moved from
the Valley to Bend two years ago, doctors told Theresa Denham “all
these separate, independent symptoms. I kept saying, ’There’s
a systemic illness here.’”
At one point, she said,
she even was accused of Munchausen’s Syndrome by Proxy, the parenting
disorder quite popular in medical TV dramas in which a parent, usually the
mother, fabricates symptoms in their children, subjecting the child to unneeded
medical tests and even surgery.
“I did become
the ’bitch mother’ or better yet, the ’mama bear,’ because
I was not content to let my daughter suffer,” Theresa Denham said.
The big break came
when a family friend, who also had camped in the high lakes area, was diagnosed
with Lyme disease, after moving to another state.
Soon, the family had
the answer they had sought, as a test—done to “humor” them—came
back positive for four of five Lyme-specific bands. That’s not enough
for the surveillance reporting of Lyme, but according to the CDC, enough
to diagnose and treat the disease. CDC officials say the number of “required”
bands for surveillance shouldn’t be used as a diagnostic tool. And
yet, doctors still fiercely debate whether Lyme is the reason for illnesses
in folks like Ashley, who have Lyme-specific bands, but not enough to report.
Patients ’better
organized,’ researcher says
The added attention
isn’t due to action by the medical community, but by those affected
by Lyme disease and the people who care about them, according to one consultant.
“What’s only
gotten better is that the patients have gotten better organized,” said
Dr. Nick Harris, president of IGeneX, Inc., a research lab that provides
tests for Lyme and other tick-borne ailments.
Harris surmised one
reason there could be so much opposition to changing the medical procedures
for dealing with suspected Lyme disease: “After giving out the wrong
diagnosis for years, a lot of these big doctors and hospitals could be open
to a lot of liability.”
The doctor said the
CDC changed in 1995 how Lyme disease is diagnosed. “They
set up really tight criteria, which is great for early Lyme. But if you
go past four months without a rash, their criteria get a lot weaker.”
“Even though the
law says not to use CDC criteria for insurance reimbursement or making a
diagnosis, a lot of people defaulted to what the CDC calls ’surveillance,’”
Harris said. “Even the CDC will admit we’re under-reporting (Lyme)
by 10-fold. You get really, really big numbers, in terms of patients that
you missed.”
When Lyme disease emerged
as the culprit behind Ashley’s pain and woes, the teen went on the
Internet, that font of knowledge (reputable and sometimes otherwise), and
did a search: “The first pages named all of my symptoms,” she
recalled.
“That’s the
frustrating thing. Doctors wouldn’t listen. Six, seven years of them
telling me, ’It’s all in your head,” said Ashley, who appears
deceptively “normal,” except for the netting on one arm that holds
the “permanent IV” for her antibiotics.
Web sites like http://www.lymenet.org
and the International Lyme & Associated Diseases Society (http://www.ilads.org)
have helped the Denhams and many others over the years, with invaluable
support and information.
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