Doctor’s Unorthodox Treatments Land Him in the `Lyme Wars’

CHARLOTTE, N.C. _ 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, N.C., 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, 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.

Jemsek’s focus on Lyme disease came after years of concentrating on HIV. He diagnosed the first AIDS case in Mecklenburg County, N.C., 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.”

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 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 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 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.

Phillip Moore, a 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 { 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, N.C., 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.”

Another patient cited in the medical board’s allegations is Kathleen Jabkiewicz of Concord, N.C. 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.

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, N.C., 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.”

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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.

Source: U.S. Centers for Disease Control and Prevention.

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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.

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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.

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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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(c) 2006, The Charlotte Observer (Charlotte, N.C.).

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