Disease surrounded by
editorial: JH By John Hall
Calaveras County couple says their lives as victims refute the number
one Lyme disease myth
that there is no such thing as chronic Lyme disease. Their experiences
with the disease demonstrate
typical and worst-case scenarios that are familiar to many who become
caught in the debate that
surrounds the controversial ailment, say Rick
and Ricki Barasingha (not their real names), long-term
sufferers of the disease.
“I think a lot of people die from this disease not knowing they even
have it,” stated Ricki.
who is in his late 40s, believes he was infected with the
disease-causing Borrelia burgdorferi
bacteria about six years ago.
who is in her mid-40s, was raised in the Alamo Hills of the East Bay
area. She remembers
first being bitten by a tick when she was 3 years old. She also
remembers receiving two or more tick
bites each year as a child. Although any of those earlier bites may
have introduced the Lyme-causing
spirochetes to her body, she remembers developing a large “bulls-eye”
rash following a tick bite when
she was 11 years old. Nobody connected the tell-tale mark to Lyme
disease, which was not identified in the
United States until several years later in 1975. The first California
case was recognized in 1978.
The bulls-eye rash (erythema migrans) is one positive identifier of
Lyme disease. The distinctive
spreading rash is a red, blotchy,
circular outbreak that may be several inches in diameter. The center
the rash is usually unaffected, giving a ring or bulls-eye appearance.
The rash is not necessarily at the site
of the tick bite but may be anywhere on the body. One or more rashes
may be present. The rash typically
will begin seven to nine days after the bite, but it can appear between
three and 30 days, and last for up to
a month. Reoccurring rashes are not uncommon in Lyme patients.
About 70 percent of Lyme victims do not remember being bitten. Only
about 38 percent of individuals
ever exhibit the rash.
Rick, works for a water agency in the county. A blacklegged tick nymph
probably bit him during the
spring or summer, 1996 while working as a volunteer on trails in the
area, he surmises, but he cannot be
sure because it was not until a year or more later that he was
positively diagnosed with Lyme. Rick never
did develop the identifying rash.
When he began having headaches, back and neck pain, and flu-like
symptoms, followed by depression
and general fatigue, he sought medical advise.
“The doctor said I was probably experiencing chronic fatigue syndrome,”
In the fall of 1997, he made a trip to Florida to consult a “Lyme
literate” doctor, a physician with training in
the disease. Staying there for a week, the journey cost him about
his stay, he submitted to a number of tests including the Western blot
test, which detects antibodies
in blood samples. Following a positive diagnosis,
the physician placed him on antibiotics. For five months,
prescribed ceftriaxone (Rocephan), which he self-administered through
central catheter, a clear plastic tube which
ran through a vein in his left arm directly to the main vein to his
heart. After the liquid antibiotic treatment, he switched to
oral antibiotics, which he continues to take.
longer diagnosis is delayed, the more treatment costs,” said Steve
Diers, an East Bay Municipal
Utility District ranger/naturalist who also has chronic Lyme Disease.
“On average, it takes 22 months and visits to seven doctors to get
Over time, additional afflictions have joined the list of symptoms
affiliated with Rick’s long-term infection.
the winter of 1997, he contracted pleurisy without realizing it.
Breathing problems associated
with the pleurisy resulted in an anxiety
attack. He also has some memory loss, arthritis and digestive
problems. On weekends, he sleeps 10 to 14 hours a day due to the
“I have good days and bad days, but I’m able to work,” Rick said.
Living a nightmare
Ricki’s bad days lasted for years.
her childhood, she seemed to enjoy excellent health. She remembers
sustaining many tick bites,
but they were just a part of a life that
included horseback riding, raising dogs and other outdoor activities
the wildlife-populated hills. Highly intelligent – her IQ reportedly
exceeded 150 – she often participated
in programs for the gifted in school.
the tick bite in her eleventh year, she started having high- and
low-grade fevers, headaches,
periods of dizziness and sore throat,
earaches, memory problems, difficulty concentrating and excessive
At age 12, she developed Osgood Slaughters disease, a painful
probably is due to the rapid growth that occurs in early adolescence.
pain was so severe that orthopedic surgeons treated me with weekly
cortizone shots and put me in
casts,” Ricki said. “I used crutches, on
and off, for years.”
The treatments continued throughout her
high school years, during which she did not participate in
education classes. Also at age 12, her menses began. She experienced
glandular swelling and low-grade depression. During
her teen years, she was out of school often with
flu-like symptoms and recurring rashes.
she was 16, she was “diagnosed” to have mononucleosis. She spent nine
months in bed with
little improvement. Also during this time, it was
found she was allergic to penicillin. She had an in-home
was not very successful at learning due to an inability to concentrate.
She later went through
a period of severe depression and hallucinations
due to the neurological aspects of Lyme.
“Lyme disease, like
syphilis, is a spirochetal infection that affects the brain,” noted
Diers. “Left untreated,
the patient will become as crazy as a pet duck.”
Becoming very ill, she entered a Kaiser Foundation hospital with a
temperature of 106 degrees.
with antibiotics for continued high fevers, rashes and other infections
over the next six months,
Ricki started “feeling sane again.”
poor concentration, memory problems and other cognitive difficulties
continued, she returned
to school. She worked many jobs while
continuing to experience intermittent illnesses, fatigue, upper
respiratory infections, sinus and ear infections, sweats, chills and
“I begged for antibiotics,” she said,
“because eventually I would feel better and concentration on my
would become easier.”
In 1982, Ricki received seven days of
tetracycline therapy from Kaiser following a tick bite that
a bulls-eye rash, fevers, severe headache and swollen elbows with
A Kaiser physician diagnosed a “non-Type A,
non-Type B” hepatitis with no apparent cause.
The attack left Kaiser’s
doctors puzzled and Ricki bedridden for the next 1½ years while the
“Western medicine had nothing to offer as
the symptoms and severe pain lingered after tests
indicated a return to
normal,” she said.
“I turned to licensed practitioners of
Chinese acupuncture, herbalists, dietitians, licensed
homeopaths and a
practitioner of Jin Shin Jytsu
know now that the only thing that really works is the antibiotics.
Other treatments – herbs,
acupuncture, diet – may supplement the
antibiotics and help with the pain but they do not
spirochetes. Only antibiotics do that. ”
“However, acupuncture allows higher functionality and relieves pain.”
the ages of 28 and 30, Ricki worked as a naturalist and horse trainer
for the National
Park Service at Point Reyes, Mt. Diablo and other
parks, earned a Master of Sciences degree
in environmental education,
and worked as a horse packer and instructor for the National Outdoor
Leadership School. Qualifying for an elementary teaching credential,
she took a position teaching
second grade in Hayward.
Due to poor health, she left the teaching profession at age 31.
was terribly fatigued. I had a urinary tract infection. Upon exertion,
I would vomit and have diarrhea.
My whole body hurt. I was unable to
function, work or take care of myself,” she said.
Recovering somewhat, Ricki obtained her dream job, a “permanent”
naturalist position with the
East Bay Regional Park District.
But, at age 33, she was bitten again by a tick. She again experienced
all the painful symptoms
from the past.
“I could not lift my head off the pillow and was in horrible agony,”
“There was a lot of medical testing. And several doctors who blamed me
for my illness, telling
me it was all in my head.”
park district sent me to see Dr. Paul Lavoie. Our friend, Steve Diers,
had been studying
Lyme and suggested that as the cause for my illness. ”
Lavoie did some tests and diagnosed me with late stage chronic Lyme
disease. He later
told others I was the sickest Lyme patient he had
ever seen and that my life was hanging by a
thread,” she related.
She also has been diagnosed with ehrlichiosis and Babesiosis, two other
doctor started her on oral antibiotics, but on the fifth day a severe
nearly killed her. She was placed on
intravenous antibiotics, where she remained for nearly 1½ years.
Jarisch-Herxheimer, also known as “herxing,” occurs when antibiotics
begin to kill the Lyme spirochetes.
The dying bacteria give off a toxin
that cause either direct or indirect reactions by stimulating the
The symptoms vary from systemic reactions like
fever, low blood pressure, chills and hives to more
like headaches, rash, joint pain, or a general worsening of Lyme
Sometimes mistaken for an allergic reaction to antibiotics or
serum sickness, Jarisch-Herxheimer
may lead to the premature
discontinuance of antibiotics.
Today, after years of riding a
roller coaster of improvement and relapse, Ricki continues to take
medications including antibiotics and supplements. Many of them have to
be scheduled to be
taken at different times of the day to avoid
“It’s either take the pills to function or don’t function,” she said.
“I’m working with horses again. That’s very healing for me. And I try
to concentrate on positive
things,” she said.
Diagnosis is difficult
disease has become known as the “Greatest Imitator” because it’s
symptoms often include
fever, chills, diarrhea, irritable bladder,
muscular aches, constipation, joint swelling, fatigue,
irregularity, shortness of breath, coughing, heart palpitations and
can be mistaken for influenza, bladder dysfunction, chronic fatigue
syndrome and other illnesses.
It may resemble, and some researchers think
it may even be a trigger for, fibromyalgia, multiple
Alzheimers disease, arthritis, attention-deficit hyperactivity disorder
mental illness, somatization disorder, seizure
and neuralgic disease, and difficult-to-diagnose
Most victims have night sweats and about 75 percent of patients suffer
early Lyme disease, symptoms can occur at any time from three to 30
days after the bite of an
infected tick. Flu-like symptoms and erythema
migrans may appear. Weeks to years after the
initial symptoms, late
stage chronic Lyme disease may develop.
may include heart disorders, meningitis, encephalitis, facial palsy,
pain and tingling in the extremities, prickling, burning or numb
sensation of the skin, double vision,
photo- or audio-sensitivity and
other conditions of the nervous system.
Traveling pains in the joints, muscles, tendons and bones, often with
no redness or swelling, may
occur at this stage.
Arthritis that appears and disappears over several years may affect the
large joints, especially
and cognitive disorders, organ disorders, lack of concentration, sleep
fatigue and seizures also may develop.
disease affects individuals in different ways,” said Diers. “In
general, Lyme disease is
worse in women than it is in men.”
current state of laboratory testing for the disease has left many
people misdiagnosed and
either untreated or delayed in receiving
The Lyme Disease Foundation reports there were
178,629 reported cases of the disease in the
United States in 1980.
Other sources say the current number, including unreported infections,
could be two million or more. Ignorance, lack of concern, and under
reporting continue to
complicate the issues surrounding the disease.
Treatment takes sides
Antibiotic treatment is one of the topics of controversy in the Lyme
doctors claim the disease is over-diagnosed and over-treated. They hold
that a short course
of treatment, usually one or two weeks, will cure
the infection and that chronic Lyme disease does
also suggest that heavy, or extended use of antibiotics called for by
doctors who believe Lyme
disease should be treated aggressively will
make the medicines ineffectual for some future need.
Lyme proponents note that the spirochete, which hides in tissue cells
rather than in the
blood, is vulnerable to antibiotics only when a cell
divides, every 28-30 days.
An individual has a six- to
eight-week period in which to receive proper treatment to prevent
problems once he or she becomes infected.
This means an antibiotic treatment regimen of six weeks minimum
duration is needed to assure
that all the bacteria are killed.
beyond the initial window of opportunity, the disease may require
treatments from one to four
years or longer, say chronic Lyme adherents.
“I think it’s worth the risk to take the antibiotics,” said Diers.
In the first article in this series on Lyme disease in the May 31 issue
of the Enterprise,
I reported that in addition to Lyme disease, the
Western blacklegged tick is also a carrier of Colorado
tick fever, human
grannulocytic and monocytic ehrlichiosis, Bartonella henselae, Rocky
Mountain spotted fever,
tularemia and Babesiosis.
is incorrect. The Western blacklegged tick carries Lyme disease,
Bartonella, Babesiosis and
ehrlichiosis. The bite of one tick can
infect the victim with one or more of these diseases.
Colorado tick fever, Rocky Mountain spotted fever and tularemia are
carried by other species of ticks.
This is the second of a two-part series of articles concerning Lyme
Contact John Hall at firstname.lastname@example.org