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Lyme victims relate experiences

Disease surrounded by controversy

The Enterprise
date: 06/04/02
editorial: JH By John Hall

A 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.

Rick, who is in his late 40s, believes he was infected with the disease-causing Borrelia burgdorferi
bacteria about six years ago.

Ricki, 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
of 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,” Rick said.

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 $4,000.

During 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,
he was prescribed ceftriaxone (Rocephan), which he self-administered through a peripherally-inserted
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.

“The 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 diagnosed.”

Over time, additional afflictions have joined the list of symptoms affiliated with Rick’s long-term  infection.

During 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 ongoing fatigue.

“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.

During 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
in the wildlife-populated hills. Highly intelligent – her IQ reportedly exceeded 150 – she often participated
in programs for the gifted in school.

Following 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
fatigue.

At age 12, she developed Osgood Slaughters disease, a painful affliction that
probably is due to the rapid growth that occurs in early adolescence.

“The 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
physical education classes. Also at age 12, her menses began. She experienced painful periods,
glandular swelling and low-grade depression. During her teen years, she was out of school often with
flu-like symptoms and recurring rashes.

When 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
teacher, but 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.

Treated with antibiotics for continued high fevers, rashes and other infections over the next six months,
Ricki started “feeling sane again.”

Although 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 emotional instability.

“I begged for antibiotics,” she said, “because eventually I would feel better and concentration on my
studies would become easier.”

In 1982, Ricki received seven days of tetracycline therapy from Kaiser following a tick bite that
resulted in a bulls-eye rash, fevers, severe headache and swollen elbows with severe pain.

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 1 years while the
symptoms persisted.

“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
(Japanese acupressure).”

“I 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
kill the spirochetes. Only antibiotics do that. ”

“However, acupuncture allows higher functionality and relieves pain.”

Between 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.

“I 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,” she recalled.

“There was a lot of medical testing. And several doctors who blamed me for my illness, telling
me it was all in my  head.”

“The 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. ”

“Dr. 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 tick-borne diseases.

The doctor started her on oral antibiotics, but on the fifth day a severe Jarisch-Herxheimer reaction
nearly killed her. She was placed on intravenous antibiotics, where she remained for nearly 1 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
immune system.

The symptoms vary from systemic reactions like fever, low blood pressure, chills and hives to more
specific symptoms like headaches, rash, joint pain, or a general worsening of Lyme symptoms.
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 negative interactions.

“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

Lyme 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,
menstrual irregularity, shortness of breath, coughing, heart palpitations and severe headaches.
It 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
sclerosis, Alzheimers disease, arthritis, attention-deficit hyperactivity disorder (ADHD), hypochondria,
mental illness, somatization disorder, seizure and neuralgic disease, and difficult-to-diagnose
multi-system syndromes.

Most victims have night sweats and about 75 percent of patients suffer depression.

In 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.

Long-term complications 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
the knees.

Mental and cognitive disorders, organ disorders, lack of concentration, sleep disorders, extreme
fatigue and seizures also may develop.

“Lyme disease affects individuals in different ways,” said Diers. “In general, Lyme disease is
worse in women than it is in men.”

The current state of laboratory testing for the disease has left many people misdiagnosed and
either untreated or delayed in receiving treatment.

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 disease discussion.

Some 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
not exist.

They 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.

Chronic 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 chronic
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.

Once 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.

Correction: 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.

This 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.

JH

This is the second of a two-part series of articles concerning Lyme disease.

Contact John Hall at jhall@calaverasenterprise.com