Do doctor's treatments help or harm? (Dr J and lyme artice)


Elected Newsgroup leader Chuck wrote:
Do doctor's treatments help or harm?
Joseph Jemsek's long-term therapies for Lyme disease differ from
typical standards, prompting complaints, investigation
KAREN GARLOCH
kgarloch@xxxxxxxxxxxxxxxxxxxxx
By the time DeAnn Lipe found Dr. Joseph Jemsek, she had been sick for
seven years.

It started with pain in her chest and tingling in her toes. Then came
pain in her hips and left eye, memory loss and incredible fatigue.

Doctors diagnosed allergies, gallbladder disease and depression. They
prescribed steroids, antibiotics and antidepressants. Nothing helped.

Then a nurse friend noticed a rash on Lipe's arm and referred her to
Jemsek, an infectious disease specialist. At his Huntersville clinic,
Lipe found her answer -- Lyme disease.

That diagnosis put her in the middle of a national medical dispute that
has been dubbed the "Lyme Wars."

At the center of the fight is Jemsek, one of 30 doctors in 10 states to
be brought before licensing boards for discipline because of the way
they diagnose and treat the tick-borne disease.

Jemsek and other so-called "Lyme-literate" doctors say chronic Lyme
disease is rampant, often ignored and needs to be treated with
antibiotics, both orally and intravenously, for months or even years.

Mainstream physicians say the approach of aggressive Lyme doctors is
dangerous and without scientific merit. Persistent Lyme disease is
rare, they say, and there is no evidence to support treatment with
antibiotics for such a long time.

In North Carolina, the medical board alleges that Jemsek diagnosed and
treated at least 10 patients for Lyme disease when they did not have
it.

One of the patients died. Another, Phillip Moore of Concord, said he
got worse while taking IV antibiotics for more than four months. "He
was treating me for something he couldn't prove I really had."

Moore expects to testify against Jemsek when the two sides face off at
a public hearing in Raleigh on June 14.

Patients seek help

Jemsek's focus on Lyme disease came after years of concentrating on
HIV. He diagnosed the first AIDS case in Mecklenburg County in 1983,
and opened his own AIDS clinic in 2000.Several months later, he saw a
patient who changed his career.

"Do you treat Lyme disease?" she asked.

Of course, Jemsek said.

The patient said many doctors don't believe Lyme disease exists in the
Southeast. Jemsek didn't balk. He prescribed tetracycline, an
antibiotic in a pill.

Soon after, another Lyme patient contacted Jemsek. Then another and
another.

They'd heard by word of mouth or over the Internet that he was a
Lyme-literate medical doctor, willing to treat their difficult
problems.

Their stories were similar: foggy memories, extreme fatigue, unusual
pain, fevers, numbness in their limbs. They had been diagnosed with
many ailments, including Rocky Mountain spotted fever, depression,
multiple sclerosis and chronic fatigue syndrome.

It reminded Jemsek of the early days of AIDS, when few doctors wanted
to treat it and patients were desperate. He says he had a feeling:
"There's something here."

To learn more, Jemsek attended a meeting of the International Lyme and
Associated Diseases Society. It was created in 1998 to support doctors
who believe mainstream medicine has ignored patients with chronic Lyme
disease.

At first, Jemsek thought many of the presentations were strange. "They
scared the hell out of me," he said, and he considered leaving.

But he met a few doctors who impressed him with their knowledge and
passion. They compared patients and treatments and talked about the
need for more research.

"Essentially it's been trial and error," said Dr. Raphael Stricker, a
California hematologist and president of the Lyme society. "Patients
remain ill after standard therapy, but when you put them on longer
treatment, they tend to do very well."

The two published studies on long-term antibiotic treatment for Lyme
disease showed no benefit. But Stricker and Jemsek say the studies were
flawed and the treatment didn't last long enough to be helpful. They
point to a third, as yet unpublished study by a Columbia University
researcher who found improvement in chronic Lyme patients who received
antibiotics for 70 days.

One of Stricker's most famous patients is best-selling author Amy Tan,
whose works include "The Joy Luck Club" and "The Kitchen God's Wife."
She has written a chapter about her Lyme disease in "The Opposite of
Fate," a book of essays. "I am in this for the long haul," she wrote,
"with treatment that will likely last for years."

So far Jemsek has evaluated 2,000 patients for Lyme disease from 42
states and as far away as Europe. Today, he is treating about 400 Lyme
patients in addition to 1,200 HIV patients.

He says blood tests for Lyme disease aren't always accurate, and the
chronic disease is more prevalent than most doctors believe. "We get so
wrapped up in our tests, we forget to talk to the patient. You have to
go back to what you see with your eyes."

Medical debate

If it's caught early, Lyme disease is easily treated.

The Lyme Wars erupted over what happens when the disease isn't detected
initially.

The U.S. Centers for Disease Control and Prevention advises looking for
a tick bite, a classic bull's-eye rash and symptoms such as joint pain
and fever.

Mainstream doctors acknowledge some Lyme patients will have persistent
nervous system and heart problems even after treatment. But Dr. Allen
Steere, the Yale University specialist who first identified an outbreak
in Lyme, Conn., in 1976, said those patients will have specific
symptoms and test results. They are also rare, Steere said, because
doctors are better at diagnosing and treating early disease.

Blood tests aren't good at detecting early disease, but they are
reliable for late-stage disease, said Dr. Paul Mead, an epidemiologist
for the CDC. If weeks or months have passed since the initial
infection, Mead said, antibodies should be present. Someone with Lyme
disease should test positive.

Based on recommendations of the Infectious Diseases Society of America,
most doctors believe four weeks of oral antibiotics -- or a second four
weeks in extreme cases -- is all that research supports. "If there was
evidence (for longer treatment), I'd jump on the bandwagon," said Dr.
Eugene Shapiro, an infectious disease specialist at Yale.

People who take antibiotics for a long time risk getting an infection
in the catheters used to deliver IV medicine, Shapiro said. Also,
overuse of the drugs can lead to antibiotic-resistance "superbugs."

"You have potential adverse effects without any benefit," he said.

Concerns about treatment

Phillip Moore, the 40-year-old Concord patient who expects to testify
for the medical board in June, said Jemsek never explained to him that
long-term antibiotic therapy for Lyme disease was not standard
practice.Like many of Jemsek's patients, Moore had spent more than a
year seeing specialists who couldn't figure out what caused his health
problems, including chronic diarrhea. His family doctor referred him to
Jemsek, who diagnosed Lyme disease.

"I just wanted to feel better," Moore said.

He started IV antibiotics in September 2004, and a month later he
became so ill he took a leave of absence from work. "I was just weak
and pale. It was affecting my personality." He noticed mood swings,
anxiety and angry "road rage" episodes.

After 4 1/2 months, Moore asked Jemsek to take the IV catheter out of
his arm. He didn't feel any better, and he was suspicious of the
treatment, which he said cost his insurance company thousands of
dollars a month. Two other specialists told him they thought he never
had Lyme disease.

While Moore was in treatment, Jemsek was building a new $8 million
Huntersville office complex, which opened in January.

"It should have a wing dedicated to me," Moore said.

Jemsek declined comment on Moore's treatment. In general, the doctor
said, "We always tell folks this is a partnership. We never claim to
have the answers."

Lawsuit over death

Another patient cited in the medical board's allegations is Kathleen
Jabkiewicz of Concord. She was 41, the mother of twin 10-year-old sons,
when she died while being treated by Jemsek for Lyme disease. Her
husband, Joseph, has sued the doctor, claiming his wife didn't have the
disease and that nearly two years of IV antibiotics contributed to her
March 2004 death.

Jabkiewicz was a pediatric intensive care nurse at NorthEast Medical
Center when, in 2002, she was referred to Jemsek by her internist. She
complained of body aches and migraines, and had seen multiple doctors.
Although lab tests were negative, Jemsek diagnosed Lyme disease, the
lawsuit says.

As treatment progressed, she began having what appeared to be epileptic
seizures, according to the lawsuit. Following a second hospital stay
for seizures, Jabkiewicz got a morphine prescription from Jemsek's
nurse practitioner for headache pain.

She took the first dose at home March 6, 2004, and was found dead the
next morning.

An autopsy gave the cause of death as morphine poisoning. It said blood
levels indicate Jabkiewicz took more than the prescribed amount of
morphine, but there was no indication of abuse. It also said she had no
evidence of active Lyme disease.

In court filings, Jemsek said Jabkiewicz' lab tests were contradictory.
He denies that he misdiagnosed her or did anything to cause her death.

Politics, insurance

Largely through patient activism, the Lyme Wars have become public and
political.In Rhode Island, the legislature passed a law several years
ago to protect doctors who prescribe open-ended antibiotic therapy. The
California Legislature did the same thing, also requiring that doctors
explain the different approaches to care.

Rhode Island legislators have also mandated insurance coverage for Lyme
disease treatment. Reimbursement varies in other states.

This month, Blue Cross and Blue Shield of North Carolina instituted its
first policy on Lyme disease. Previously, the company paid most claims
for lab tests and long-term antibiotics. The new policy doesn't set
limits on what the company will pay, but it cites short-term antibiotic
therapy as the standard to follow.

If insurance won't pay, fewer patients could afford months of drug
treatment.

It happened to DeAnn Lipe, the 38-year-old nurse from Troutman who has
been treated by Jemsek since February 2005. After two months of
treatment, just as she was beginning to feel better, her insurance
company stopped paying claims.

She couldn't afford the "thousands of dollars a month," so she stopped
the treatment. Ten weeks later, after finding three other doctors who
supported Jemsek's diagnosis, she re-started treatment, again covered
by insurance.

After six months of IV antibiotics, Lipe said she began feeling better
in March. She vacuumed her carpet for the first time in months. She
shopped for groceries without assistance.

Confident that Jemsek's treatment is working, Lipe worries what will
happen to her and other patients if the medical board takes his
license.

Dr. Christopher Ohl, an infectious disease specialist at Wake Forest
University, shares her concern about the patients.

Unlike Jemsek, he doesn't believe there's much Lyme disease in North
Carolina. But he agrees that people with chronic, vague complaints
aren't served well by mainstream medicine.

"They're kind of pushed away, which makes them feel worse," Ohl said.

"They may not need a year's worth of antibiotics. What they need is
recognition that they don't feel well (and) that they have symptoms
that aren't well understood. We just don't have the answers yet."

Overview

Lyme Disease

· Caused by a bacterium spread by the bite of infected deer ticks.·
First recognized in the United States in 1976 in Lyme, Conn.

· Symptoms include fever, headache, fatigue and a characteristic
bull's-eye skin rash. Not all patients will develop the rash or recall
a tick bite. If left untreated, infection can spread to joints, the
heart and the nervous system.

· Blood tests are helpful in diagnosing later stages of disease.
Early Lyme disease is diagnosed based on symptoms and the possibility
of exposure to infected ticks.

· Most cases of Lyme disease are treated successfully with a few
weeks of oral antibiotics. Some doctors contend that chronic Lyme
disease is prevalent and requires long-term antibiotic treatment, but
this is controversial.

· Ticks that transmit Lyme disease sometimes transmit other
tick-borne diseases as well.

· Reported cases rose 69 percent from 11,700 in 1995 to 19,804 in
2004. Concentrated in the Northeast and Mid-Atlantic states, northern
Midwest and Northern California. Reported cases are rare in the
Carolinas -- 122 in North Carolina and 22 in South Carolina in 2004.

For Information

· U.S. Centers for Disease Control and Prevention: www.cdc.gov.

· Lyme Disease Association: Toll-free (888) 366-6611;
www.lymediseaseassociation.org.

· Infectious Diseases Society of America: (703) 299-0200;
www.idsociety.org.

· International Lyme and Associated Diseases Society (ILADS): (301)
263-1080; www.ilads.org.

Rocky Mountain Spotted Fever

Rocky Mountain spotted fever is not related to Lyme disease. But it is
also transmitted by ticks and is far more prevalent in North
Carolina.· Caused by a bacterium transmitted by the American dog tick
or the wood tick.

· Symptoms include fever, nausea, vomiting, muscle pain, lack of
appetite and severe headache. Later signs and symptoms include rash,
abdominal pain, joint pain, and diarrhea.

· The disease is diagnosed based on signs and symptoms.

· Treatment with antibiotics for five to 10 days is standard. Without
prompt and appropriate treatment, it can be fatal.

· Occurs throughout the United States from April through September,
but the highest rates of illness are in North Carolina and Oklahoma.
North Carolina reported 535 cases in 2004; South Carolina 64. News You
Can Use

Prevent Tick-borne Disease

· Wear light-colored clothing so you can see ticks crawling. Tuck
pants legs into socks so ticks cannot crawl inside pants legs.

· Apply repellents to discourage tick attachment.

· Conduct a body check upon return from tick-infested areas. Use a
hand-held or full-length mirror to view all parts of your body.

· Remove any tick you find.

· Check children for ticks, especially in the hair, when returning
from tick-infested areas. Ticks may be carried inside on clothing and
pets.

Dr. Joseph Jemsek

Born: April 16, 1949, in Mattoon, Ill.

Married: June 1996 to Kay Jemsek; their children are James, 6, and
Jordan, 2. Two children, John, 29, and Joanne, 25, from a previous
marriage.

Education: Graduated University of Illinois in Champaign-Urbana in
1970, University of Illinois medical school in Chicago in 1974.

Residency: Medical University of South Carolina in Charleston.

Fellowship: Infectious disease at Baylor College of Medicine, Houston.

Career: Joined the Nalle Clinic in Charlotte in 1979. Opened Jemsek
Clinic in Huntersville in 2000.

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