Climb
back from lyme
Maine Sunday Telegram
Portland, ME
by Selena Ricks
1 Aug 2004
ONLINE RESOURCES:
http://mmcri.org/lyme
www.ilads.org
UNDERSTANDING LYME
A BACTERIAL INFECTION
that is spread by deer ticks, Lyme disease begins in the skin and spreads
to the joints and nervous system. The disease can cause joint pain, heart
problems, sleep disturbances, stiff neck, rashes, numbness and exhaustion.
Most prevalent along the upper East Coast, the upper Midwest, Northern California
and the Oregon Coast, the disease affects more than 16,000 people each year.
COMMON SYMPTOMS
MOST LYME VICTIMS develop
a characteristic bull’s-eye rash within three to 21 days of exposure.
Other indications are flu-like symptoms, fatigue, muscle and joint pain,
fever, headache, chills, facial palsy, stiff neck and gastrointestinal problems
PRECAUTIONS:
- Tuck your pant
legs into your socks and your shirt into your pants when walking in the
woods and tall grass. Deer ticks will attach to clothing and walk upward.n
Wear light-colored clothing so you can see the ticks.
- Use a repellent
containing DEET, particularly on shoes, socks and pant legs.n Inspect
yourself and companions for ticks after walking in a field or the woods.
Ticks like shady, damp places like behind the knees, ears and in the scalp.
If possible, shower and wash clothes immediately. Heat drying is effective
in killing ticks.
- If you do find a
tick on you, use tweezers to grasp the tick as close to the skin as possible
and pull straight out. Then apply an antiseptic to the bite area. Do not
irritate the tick prior to removal with heat or chemicals, or grasp it
by the body, as this may cause the tick to inject more germs into the
skin. Tape the tick to a card and record the date and location of the
bite. Lyme disease is rarely transmitted before the tick has been attached
for 36 hours.
Maine Medical Center
Research Institute Lyme Disease Research Laboratory
WEST BATH — For
a breathtaking moment, she raised her hands in triumph, in awe of what her
body had done. At age 58, Rita Losee perched atop Mount Katahdin, the finish
line of a solo adventure on the Appalachian Trail. Between March and August
2000, she hiked 2,167 miles from Georgia to Maine, undoubtedly some of the
most incredible and satisfying months of her life.
Losee’s experience
on the trail culminated decades of physical achievement and personal growth.
But the most grueling
challenge for the champion triathlete, rock climber, motivational speaker
and divorced mother of two lay ahead. Losee soon realized her life-affirming
trek was the epitome of a so-called double-edged sword. Somewhere along
the trail in the woods of the New Jersey-New York border on a day she wasn’t
wearing her DEET bug spray, Losee contracted an unfortunate souvenir —
Lyme disease, from the bite of an infected deer tick.
“I looked down
at my leg and said, ‘Hmm, I don’t remember having a freckle there,’”
recalled Losee, now 62. “It wiggled. I ended up pulling off about four
or five deer ticks.”
Aware of the risk of
Lyme disease but focused on her goal of completing the trail, Losee didn’t
worry too much about the tick bites until she took a break from her journey
to celebrate the Fourth of July at her summer home here.
“I woke up one
morning and could hardly turn my neck,” said Losee. “I had unbelievable
stiffness in my neck. And exhaustion.”
A career nurse, Losee
knew she might be experiencing symptoms of Lyme disease. She immediately
saw a local doctor and her diagnosis was confirmed.
What Losee didn’t
know was that the infection would manifest into a four-year battle against
excruciating pain and a test of her wits as she found herself caught in
the growing medical debate over diagnosis and treatment.
Since it was first
identified in the United States in 1975, when there was an unusual outbreak
of arthritis near Lyme, Connecticut, Lyme disease has emerged as a major
public health concern.
The disease was reported
in Maine in 1986, and state health officials have seen an increase in cases
in recent years. In 1999, 90 Lyme disease cases were reported in Maine.
Last year, there were 175 reported cases.
Experts say Lyme-infected
deer ticks have expanded their range deeper into Maine this summer.
WIDESPREAD DISAGREEMENT
The Centers for Disease
Control and Prevention (CDC) and the National Institutes of Health support
the belief that Lyme disease is easily diagnosed and quickly treated. But
questions remain about how much Lyme disease is missed and how many cases
of other illnesses are misidentified — and mistreated — as Lyme.
The International Lyme
and Associated Diseases Society (ILADS), based in Maryland, contends that
there are up to 5 million misdiagnosed cases a year.
They also claim the
CDC’s standard tests often fail to identify the disease, missing 35
to 40 percent of cases.
The group also charges
that the CDC’s standard for antibiotic treatment is too brief to provide
a lasting cure for many sufferers, and may enable the bacteria to morph
and thrive inside the body.
“There is an acute
lack of information,” said Christi O’Connor, media representative
for ILADS. “Chronic Lyme is treatable, but we don’t know if it
is curable.”
Author Amy Tan recently
became an advocate for ILADS after doctors affiliated with the organization
diagnosed her with late-stage Lyme disease.
Tan, best known for
writing “The Joy Luck Club,” suffered extreme pain, fatigue and
even hallucinations over a period of four years and saw 10 physicians before
the disease was identified.
Tan didn’t realize
how tiny the tick could be — about the size of the period at the end
of this sentence — and her rash never fit the standard description.
ILADS board member
Dr. Daniel Cameron, of Mount Kisco, NY, chief author of new Lyme disease
treatment guidelines published by the group, hopes the new recommendations
will increase doctors’ awareness of Lyme symptoms and treatment.
“The hope is (doctors)
will include patients presenting with poor memory, concentration and fatigue
as having Lyme instead of only relying on the rash,” said Cameron,
who has been treating Lyme patients for 15 years. “I think a lot of
people do quite well if you just treat them sooner, and if you treat them
for longer than 30 days.”
Dr. Rob Smith, an infectious
disease specialist and researcher with the Vector Borne Disease Research
Laboratory at Maine Medical Center, said studies show 80 to 90 percent of
patients with Lyme do have a tell-tale rash, and most early cases can be
treated within 10 to 21 days with oral antibiotics.
“There have been
no benefits demonstrated in peer-reviewed literature for extended courses
of antibiotics beyond the usual two-week time course,” said Smith.
“In general, the feeling is that this is a disease that responds well
to treatment.”
‘ROOM FOR MORE
RESEARCH’
Smith said that there
is room for more research into what causes persistent symptoms in people
who have been treated for Lyme, and also Lyme’s effect on the immune
system.
“There is frustration
for people who had Lyme and have fatigue or joint pain after treatment,”
said Smith.
Losee does not recall
any rash. “Although, I was covered in mud up to my knees, so I could
not have noticed,” she said.
After her initial doctor’s
visit, Losee was given a two-week prescription of doxycycline, the standard
antibiotic treatment for early Lyme disease.
The doctor assured
her that if her treatment erased her symptoms within 48 hours, after two
weeks her Lyme disease would be cured and she could resume the remaining
leg of her hike from Massachusetts to Maine.
“As far as I was
concerned, that was the end (of the Lyme). I was done with it,” said
Losee.
Losee was able to complete
the Appalachian Trail. But once the thrill of her accomplishment wore off
she still had the same stiffness, joint pain and fatigue.
After realizing that
she was feeling more than the expected exhaustion from her excursion, Losee
returned to the local doctor for another blood test. Her results showed
she still had Lyme disease, and she was put on three more weeks of doxycycline.
Summer was over and
Losee returned to her home at the time in Boxbury, Massachusetts, where
she juggled roles as a motivational speaker, writer and consultant. When
she stopped using her treatment, her pain and exhaustion resumed, so in
late fall Losee saw a Lyme disease specialist in Massachusetts.
“He drew blood,
and said to me, ‘You don’t have Lyme disease. You have chronic
fatigue syndrome.’ And he stopped my antibiotics,” she recalled.
Losee stayed off the
antibiotics she had been taking to treat her Lyme, even though she slowly
began to feel worse over several months.
On July 30, 2001, Losee
felt well enough to climb Mount Monadnock in New Hampshire. The following
day she spent on the couch, achy and unable to move. “That’s when
I said to myself, ‘This is not chronic fatigue, Rita,’” recalled
Losee. “This is still Lyme.”
She began extensively
researching Lyme disease and contacted a Lyme support group in her area,
where she was given the names of two Lyme disease specialists in Connecticut.
Dr. Steven Phillips had a six-week wait for new patients, while Losee would
have to wait 12 weeks to see Dr. Bernard Raxlen. She made an appointment
with Phillips, and in the meantime asked her primary care physician for
an immediate prescription of doxycycline.
This time, the antibiotics
gave Losee a severe reaction, which resulted in bouts of extreme pain in
her face muscles. She was forced to halt her work as a motivational speaker
and consultant as her health continued to deteriorate.
ROCKY ROAD BACK
In August 2001, Losee
decided to return to nursing part-time, but was in so much pain during her
first day of orientation that she could not go back.
A month later, Losee
had a friend drive her to see Dr. Phillips in Ridgefield, Connecticut. He
prescribed her with oral antibiotics, Tetracycline and Biaxin.
By November 2001, Losee
felt her new treatment was working well enough to return to nursing again.
When she was on the
treatment, she felt better, but when she stopped taking the drugs for a
few weeks, she developed pain so bad that she became severely depressed.
Last fall, her thoughts turned to suicide.
“I was starting
to think there was no return on my investment for breathing,” she recalled.
Negative thinking was
not something Losee was known for — she finished the Hawaii Ironman
triathlon at age 46, has written books and climbed the 19,350 foot Mount
Kilimanjaro.
“Before Lyme,
my body would do anything I asked it to,” she said. “After Lyme,
it was like I was a cadaver, dragging my own body in a body bag.”
In January 2003, Losee
semi-retired to her home here, continuing to work as a nurse in Everett,
Massachusetts, for six days at a time followed by eight days off.
Last October, she went
to Dr. Raxlen’s office and was given a 90-day prescription for an IV
of the drugs Mepron and Zithromax. The aggressive treatment was ultimately
extended to six months.
Losee ended her use
in May, and she felt well enough to run a 5K road race in June.
“That was probably
even better than being on the summit of Katahdin,” said Losee. “It
was incredibly meaningful to do that again.”
Losee says if she is
ever diagnosed with Lyme again, she will hire someone to thoroughly research
the diagnosis and ever-evolving treatments for Lyme.
“People don’t
really recognize what a devastating disease it is,” said Losee. “A
lot of people with Lyme are unable to work, and therefore have no health
insurance. Or their insurance decides that chronic Lyme doesn’t exist
or is something else, and they are denied coverage.”
While Losee says she
is lucky that the majority of her medication and doctor’s visits were
covered by her health insurance, her visits to the Connecticut specialists
were not covered and she estimates that in 2003, she spent $12,000 from
her own pocket on expenses related to her Lyme disease.
Losee’s story
was recently published in a book called “Conversations on Success”
(Insight Publishing). She is resuming her work as a motivational speaker
and consultant, and she has plans to get back in shape and climb more mountain
trails.
Staff Writer Selena
Ricks can be contacted at 791-6451 or at: sricks@pressherald.com
Beth Murphy, staff
researcher, contributed to this story
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