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Kaiser Lyme Disease Patients Advice and Information

Geographic Distribution of Ticks in the United States - CDC Maps 2012

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 intravenousantibiotics, where she remained for nearly 1 years.
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