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No Warranties or Representations
Lyme Disease symptoms vary from person to person. (lymes disease lyme's disease lime disease limes disease)
The data and information presented in this web site are presented in good faith and believed to be accurate regarding Lyme disease (commonly misspelled lymes disease lyme's disease lime disease limes disease) and other related diseases. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections. Lyme disease symptoms may vary from person to person.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect to discuss your Lymes Disease Symptoms.
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Medical Board Blocking Care
by M.E. Pellin
February 08, 2007
Fifteen-year-old Kalyn Faggart can feel her world growing dark. It
starts with a throbbing pain near the back of her head, the pressure from
fluid accumulating in her cranial cavity building and pressing against her
sensitive optic nerve with a blinding intensity.
Kalyn's world goes dark one slow frame at a time, the result of a
debilitating disease that attacks the central nervous system. Her field of
vision narrows as the swelling around her brain becomes more severe,
progressively stealing her sight by the hour, day and week.
Kalyn's mother, Denise Faggart, knows that time is precious and that
it is running out.
"If left untreated, Kalyn's ophthalmologist says she'll go blind,"
Denise Faggart said flatly of her daughter's deteriorating condition. "Right
now, we're looking at about a four-week window and it's terrifying."
Denise Faggart has been in a race against the clock for nearly a month
now, petitioning the N.C. Medical Board to allow her daughter to continue
receiving medical care from Dr. Joseph Jemsek, a Charlotte-area infectious
disease specialist who is at the center of a national controversy over Lyme
disease that nearly cost him his medical license and, advocates contend, has
left hundreds of his patients in dire straits.
Patients like Kalyn Faggart.
Three years ago, Kalyn was sideswiped by a mysterious onslaught of
ailments - chronic joint pain, crippling headaches, an alarming loss of
cognitive abilities and a measured loss of vision.
She had gone from a straight-A student who loved hiking and playing
the piano, Denise Faggart said, to a girl who was stumped by simple math
problems and was often left bedridden for days.
After months of doctor visits and batteries of exams, Kalyn's
pediatric neurologist, Dr. Robert Nahouraii of Mecklenburg Neurological
Associates in Charlotte, suggested she get tested for Lyme disease.
The Faggarts went to see Jemsek, who had drawn national acclaim during
the late 1980s for his pioneering work in the field of HIV/AIDS. Six years
ago, Jemsek began expanding his medical practice to include the treatment of
Lyme.
By the time Kalyn was referred to him in 2004, Jemsek had gained a
reputation as one of the forerunners of so-called Lyme literate doctors,
with patients from across the country seeking him out for treatment.
"We had the best neurologist; we had the best ophthalmologist and we
wanted the best infectious disease specialist," Denise Faggart said.
Kalyn tested positive for Lyme and, under Jemsek's care with
consultation from Nahouraii and Kalyn's pediatric ophthalmologist, Dr.
Sandra Brown of Cabarrus Eye Center, she began a regimen of oral
antibiotics.
After more than a year, Kalyn showed only limited progress and her
doctors decided to pursue a more rigorous intravenous treatment.
"It wasn't an easy decision to make, but everybody had come to the
conclusion it was what would work best," Denise Faggart said.
Everybody, it seemed, had been right. Over the course of the ensuing
months, Denise Faggart said, the IV treatments worked wonders.
"Kalyn was Kalyn again," she said. "I know it sounds melodramatic, but
it was a miracle."
The miracle turned into a nightmare last summer, she said, when the
N.C. Medical Board suspended Jemsek's license to practice medicine for one
year.
The board ruled that Jemsek's treatment of Lyme disease using
long-term courses of antibiotics fell outside the prevailing standard of
care, even though the guidelines on which the standards were based - which
advocate antibiotic treatments of no longer than 28 days - are stated to be
optional.
The accepted guidelines, which were written by the Infectious Diseases
Society of America, state that there is no proven evidence that the bacteria
that causes Lyme persists past the first few weeks of treatment.
Additionally, while consent for treatment was obtained from every
patient Jemsek treated, the board ruled that Jemsek failed to adequately
inform patients that his treatment significantly differed from the accepted
norm.
The board immediately "stayed," or lifted, the suspension, allowing
Jemsek to continue practicing medicine but with a number of restrictions for
a period of one year. One of the restrictions was a prohibition from
administering antibiotics for more than 60 consecutive days to treat Lyme
patients.
Last September, Kalyn's cycle of IV antibiotics hit the 60-day mark.
When the treatment was stopped, Denise Faggart said, Kalyn's symptoms
returned with a vengeance.
Mass doses of diuretics to relieve the fluid swelling in her cranial
cavity proved futile, as did a combination treatment of other medication.
Last month, Kalyn underwent multiple lumbar punctures - painful procedures
where a needle is inserted into the spinal cord to drain excess fluid - all
without success.
"It's not that we haven't tried every route possible," Denise Faggart
said. "It's that nothing else has worked."
Kalyn was put on restrictive bed rest following the failed lumbar
punctures; her eyesight gradually diminishing as the pressure on her optic
nerve increases and her mother continues to petition the N.C. Medical Board
for a waiver of the 60-day treatment restriction placed on Jemsek. Nahouraii
and Brown have also both encouraged the Medical Board to allow her treatment
under Jemsek to continue.
Last week, Denise Faggart learned that the Medical Board's director
and its attorney had initially indicated they want the Faggarts to explore
options of seeking treatment from other physicians in North Carolina, or
traveling to the northeastern US for care, before considering her request
for a waiver to the restrictions placed on Jemsek.
Denise Faggart was devastated.
"It's insanity," she said. "We're begging our own state's Medical
Board to allow Kalyn to get healthy. We've already searched for other
doctors in and out of North Carolina, and they either deny chronic Lyme
disease exists or refuse to help.
"I don't think the Medical Board set out to harm children when they
took their action against Dr. Jemsek," Denise Faggart said. "But they are.
They're harming my child."
And she's not alone. The parents of another of Jemsek's Lyme
patients - 15-year-old David Jacks - are also petitioning the Medical Board
to allow Jemsek to continue administrating IV antibiotics to their son.
David's two other treating physicians have also written the Medical Board,
encouraging the board to allow Jemsek to continue treating David.
"It's been incredibly frustrating," said David's mother, Katie Jacks.
"David's in a tremendous amount of pain and the longer this drags out, the
worse it gets."
David's medical history is remarkably similar to Kalyn's: Nearly three
years ago, he went to bed one night feeling fine and woke up the next
morning with chills, a fever and severe body aches.
"We thought it was a bad cold," Katie Jacks said, "but it kept getting
worse and it didn't stop."
The Jacks sought treatment from a variety of doctors and David
underwent myriad tests, until a psychologist recognized his symptoms as
possibly being Lyme-related and recommended Jemsek.
David, similar to Kalyn Faggart, was started on a regimen of oral
antibiotics but failed to respond. After nearly a year, the Jacks opted for
a more aggressive IV treatment.
The first few weeks, Katie Jacks said, were horrifying. The potent
antibiotics were actually making her son physically sicker.
"It's almost like chemotherapy," Katie Jacks said. "The treatment is
difficult; it makes you sick while it's making you better."
After the initial sickness that accompanied the first IV cycle passed,
David showed remarkable progress. But, like Kalyn, he became progressively
worse as he was weaned off the IV. When the treatments resumed, so did his
health.
"It's like night and day," Katie Jacks said.
In that respect, it's been a long and dark night since David's IV
treatments were halted by the Medical Board's 60-day restriction, Katie
Jacks said. Her son has been receiving oral antibiotics from another doctor,
but the doses are either too low to prove effective, or too strong for David
to keep down.
Over the last six weeks, Katie Jacks said, her son has lost about 10
pounds, the result of a severe digestive disorder; he runs a constant fever,
while recurring migraines and swollen joints bring him at times near tears.
His eyes, while not immediately in danger of losing sight like Kalyn's, are
incredibly sensitive to light. He can't venture outside, even on cloudy
days, without wearing two pairs of thickly tinted sunglasses.
"He says it's like living in a constant blur of pain," Katie Jacks
said.
When Katie Jacks learned last week that the Medical Board was
expressing reservations about granting a waiver for Jemsek to continue
treating her son, she was crushed.
"We're at the end of our rope," she said. "We've looked for other
doctors, but nobody will deal with it here because they're terrified by what
happened to Dr. Jemsek.
"All we want is for our son to be able to be home and get well," Katie
Jacks said. "Dr. Jemsek did that for us. He gave us back our son's life."
Other former patients, however, say that Jemsek destroyed theirs, that
he's a reckless maverick more concerned with making a fast buck than with
delivering quality medical care.
The N.C. Medical Board brought charges against Jemsek based on his
treatment of 10 patients. During a two-day hearing last June in Raleigh, the
Medical Board's attorneys - who act as prosecutors for cases brought before
the 12-member board - argued that Jemsek's treatment violated accepted
standards of care, and did more harm than good.
While more than 200 of Jemsek's patients turned out at the hearing to
provide support, and hundreds more had sent letters offering the same,
several former patients testified before the Medical Board that Jemsek had
used them as a "guinea pig," pumping them full of expensive antibiotics for
months, sometimes years at a stretch, even if they had not been tested or
had not tested positive for Lyme disease.
Heather Jenkins, who went to Jemsek in April 2002 with chronic fatigue
and flu-like symptoms, told the Medical Board that Jemsek kept her on daily
IV antibiotics for nearly a year-and-a-half, during which time she developed
multiple infections around the IV port in her arm. The last infection, she
said, put her in a hospital intensive-care unit for five days.
"He almost killed me," Jenkins said of Jemsek.
A blood test showed that she did not have Lyme, although lab testing
often proves unreliable in detecting the bacteria that causes the disease.
Joseph Jabkiewicz testified that his wife, Kathy, died after receiving
treatment from Jemsek. Jabkiewicz said that Jemsek misdiagnosed his wife
with chronic Lyme disease and subjected her to two years of needless
antibiotic treatments, despite numerous lab tests that did not present
positive for Lyme.
Over the course of her treatments, Jabkiewicz told the Medical Board,
his wife became increasingly ill and was hospitalized numerous times.
Jabkiewicz is currently suing Jemsek in civil court. According to the
lawsuit, Kathy Jabkiewicz obtained a prescription for morphine from Jemsek
to help ease her pain and died after one dose.
Jenkins is also pursuing a lawsuit against Jemsek.
Through his attorney, Jim Cooney of Womble Carlyle Sandridge & Rice,
PLLC, Jemsek issued the following statement: "While applicable federal and
state law prohibits us from discussing the specifics of any patient care, I
can assure you that there is another side to the story."
Jemsek told the Medical Board that his treatment of Lyme patients has
evolved with time and that most patients now receive breaks between active,
long-term therapy. He said that only the sickest 20 percent of his hundreds
of Lyme patients receive IV treatment, and that he has changed some of the
language in the consent forms patients sign to emphasize that such treatment
differs from the accepted norm.
Ironically, five of the patients who the Medical Board built its case
against Jemsek around are still his patients and had written letters in
support of Jemsek.
One patient, James Bowes, told the Medical Board that Jemsek had
explained the risks of long-term treatment and that those treatments had
helped him regain his health.
And in a Charlotte Observer article, one Medical Board member, Dr. Art
McCulloch, conceded that long-term antibiotic treatment like Jemsek provides
might one day be the norm.
The article, which was published after the board had disciplined
Jemsek, reads, "McCulloch, the Charlotte anesthesiologist, said Jemsek's
approach could become the standard in five years, but for now patients need
to know 'his practice is out of the ordinary.'"
Dr. Beth Jordan, president of the North Carolina Lyme Disease
Foundation in Raleigh, said she empathizes with the patients who testified
against Jemsek, but maintains they represent only a small handful of the
ones he treats, including herself.
Jordan received successful treatment from Jemsek for chronic Lyme
disease, she said, after being shuffled for years from doctor to doctor.
"He helped me get my life back," Jordan said. "By the time most of his
patients get to him, they've suffered and been desperately ill for years,
seen countless specialists and many of them had nearly given up hope for
help.
"I'm glad the Medical Board allowed Jemsek to continue practicing,"
Jordan said. "I think they recognized he's serving the community in a good
way."
Katie Jacks agreed, but worries about the fate of her son resting in
the hands of the Medical Board.
"I feel that in many ways Dr. Jemsek has gone well beyond the call of
duty and literally sacrificed his reputation in the eyes of many to help
very ill people like my son," Katie Jacks said.
"I credit Dr. Jemsek with saving my son's life," she said. "But will
he be allowed to continue?"
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