•

As with most vacations,
this trip called for some
hiking, an activity they
both loved. "At
Tanglewood, we walked in
and out, three mile s in the
brush," Betsy says. "I was
wearing a sweatsuit, but I
didn't use any repellent
because of the baby."
Joel, who often is
plagued by mosquitoes,
used repellent and was not
bitten. He remains symp-
tom-free of Lyme disease,
yet his life, too, has been
changed forever by Betsy's
illness.
Though it took her
more than a year, myriad
medical tests, misdiagnoses
and many doctors to finally
arrive at Lyme disease,
Betsy feels certain she was
bitten by a tick during that
walk in or out of
Tanglewood. She was in an
area designated endemic
for Lyme disease, but no
signs were posted.
"If only I had known,
Betsy says. "I could've
made a choice about taking
precautions.
But there were no warn-
ings. In certain parts of the
country, Lyme often is
downplayed because of its
impact on tourism, Betsy
says. Though some regions
are hit harder than others
— the Northeast,
California and some
Midwestern states — Lyme Betsy and Joel face their future with optimism.
has been found in 47 states
toms of other diseases, such as multi-
so far. A recent study turned up
ple sclerosis, chronic fatigue syndrome
offending ticks in a New York City
or mental illness. This factor, coupled
park. And Betsy's doctor says he has
with
limited physician experience in
patients who've gotten Lyme from
treating
Lyme disease as well as a nar-
their suburban Detroit backyards.
row definition of the illness from the
Despite its prevalence, Lyme disease
Centers for Disease Control, often
is one of those things most of us know
results in misdiagnoses. Patients often
vaguely about from news reports and
traipse from one specialist to another,
magazine articles. Most people know
repeating costly tests, before Lyme is
it's a bacterial infection transmitted
confirmed.
from the bite of certain ticks (deer,
For Betsy, securing that diagnosis
black-legged, Lone Star) and often
took
more than a year. The list of
causes a "bull's-eye" rash with a red
symptoms grew longer: ringing ears,
outer ring and clear center. However,
ear pain, cough, soreness in ribs, chest
only about 60 percent of those infect-
pain, heart palpitations, wooziness,
ed get the rash. Without that telltale
queasiness, low-grade fevers, migrating
sign, as in Betsy's case, many miss the
pain, stabbing pains in her mouth and
early stage that can be treated success-
throat.
fully with oral antibiotics.
"I'm articulate, but the symptoms
So the infection is disseminated
were difficult to describe. I knew in
through the body's systems where it
my gut that something was wrong. I
hides among cells and mimics symp-

_

11/14
1997

76

had a strong feeling it was an infec-
tion, that it was not emotionally
based," Betsy says. "But you start to
doubt yourself."
She and Joel were appalled by some
physicians' comments, duly noted in
her journals. A few still rankle: "If you
had a serious illness, you'd have one or
two symptoms, not 10 or 20."
"When you're in enough pain,
come back and I'll give you some
Prozac."
Closer to home, a few friends and
relatives joined the chorus. "People
who'd known me for years thought I
was crazy," Betsy recalls. "One relative
told me to go see a psychiatrist."
The diagnosis of Lyme disease was
further complicated by problems with
Betsy's pregnancy. Shortly after return-
ing from Tanglewood, she began hav-
ing vaginal bleeding. The pregnancy

was molar, which is fairly rare. The
pregrancy could not be sustained and
doctors subsequently found lesions on
her lungs, requiring chemotherapy.
Eight weeks after her trip and
before chemo, the first Lyme symp-
toms appeared — swollen glands that
went away after a couple of days. Two
weeks after chemo, she began experi-
encing more symptoms, including
pressure in the back of her mouth,
stabbing pains in her throat and head
pain.
Chemotherapy ended after six
months and Betsy thought the symp-
toms would be over. But they started
getting even more intense: pain in her
face, head and teeth; arthritis in her
knees; pinprick and burning sensa-
tions.
"Every day I woke up to new symp-
toms," Betsy says. "I knew something
was seriously wrong and no one
believed me."
Despite these disorienting aches
and pains, Betsy continued to work,
but with diminishing effectiveness.
"I'd see patients and I'd feel drugged,"
she says. "I could hear them and see
them as if from a distance and off to
one side. It was scary.
"Ironically, one day I was giving a
talk on stress and health at a company.
It went over well. But all the things I
told people to do weren't working for
me. My body was falling apart. I came
back to the office and collapsed on the
floor. I had chest pains and heart pal-
pitations."
•
She was hospitalized and, soon
after, went on medical leave from her
job.
Still there was no Lyme disease
diagnosis. She had tested negative for
Lyme during a complete medical
workup at the National Jewish
Hospital in Denver, so she put the dis-
ease on a back burner. Finally, Joel
happened to have a conversation with.
an internal customer at the Detroit -
Medical Center, where he's manager of
corporate services within the informa-
tion services department. The woman
had been on medical leave for Lyme
disease. Her symptoms sounded a lot
like Betsy's.
"This started the whole ball
rolling," Joel recalls. Betsy now had a
starting place. She went to the Waynio
State University Medical School com-
puter to look up Lyme disease symp-
toms. And she found more informa-
tion on the Internet.
"I had a lot of the symptoms. So I
started thinking back to where I'd
traveled," Betsy says. "I started putting
two and two together."

