The number of Lyme cases in the United States has reached record levels, according to the latest figures from the U.S. Centers for Disease Control and Prevention in Atlanta. The agency reported 17,730 cases in 2000, an 8 percent increase from the year before. The CDC says Lyme cases are underreported.
Experts predict an especially bad tick season this year.
Beyond Lyme disease's symptoms lies the truth
Controversy rages over very existence of chronic infection
Sunday, May 12, 2002
BY CAROL ANN CAMPBELL
They talk of breathtaking pain. Their hands shake, and, sometimes, their faces go numb. Fatigue can send them to bed. Some sleep 12 hours each day and can no longer concentrate. Others can no longer walk. They have left jobs as lawyers, nurses and managers.
These people say they have chronic Lyme infection.
Some Lyme disease experts say they do not.
Twenty five years after its discovery, Lyme disease, a tick-borne illness that can cause fever, headache, joint pain and neurological problems, remains steeped in controversy even as research hits record levels. Conflicting science has created two camps that fiercely push their views in one of modern medicine's most enduring disputes.
Leading scientists are stepping into the fray. Columbia University in New York is opening a chronic Lyme disease research center. The National Institutes of Health will spend more than $39 million on research this year, nearly double the amount spent just five years ago.
New discoveries further muddle the Lyme landscape. Researchers are finding new tick-borne illnesses, even a new strain of Lyme, that complicate treatment and, perhaps, explain why some people with Lyme disease do not seem to get well.
Patient organizations, meanwhile, are gaining political and financial strength. They are funding their own research and lobbying state and local governments to demand that the illness be taken seriously.
"Attention is finally being paid to this disease," said Pat Smith, president of the Lyme Disease Association, based in Ocean County.
But after thousands of research studies and years of debate, physicians still disagree on whether Lyme disease is easily cured with a short course of antibiotics, or whether long-term infection can cause debilitating disease.
"I honestly don't feel a lot of these people have Lyme disease. I'm not sure a majority have Lyme disease," said David L. Weld, director of the American Lyme Disease Foundation, a Westchester County, N.Y., group whose scientific advisers are skeptical about the existence of chronic Lyme infection.
The stakes are high. On the line are insurance coverage, research grants and professional reputations. Lawsuits are being filed by patients who say their Lyme disease worsened because doctors did not diagnose it and treat them.
"Expect more lawsuits," said Smith.
Just about all physicians agree that Lyme disease, if caught and treated early, usually can be cured with four to six weeks of antibiotics. The disease is transmitted by ticks, and some patients experience the characteristic "bull's-eye" rash after a tick bite. Many never recall being bitten.
Most physicians also agree that a subset of patients go on to develop chronic pain and fatigue and, sometimes, serious neurological problems.
The question is why.
"No one is saying these people are not sick. They experience a level of pain that is comparable to that of a brain tumor or cancer," said Phillip Baker, a microbiologist who oversees Lyme research for the National Institute of Allergy and Infectious Disease.
"The question is whether the problems are due to a persistent infection, or to something else," he said.
Patient advocates and some doctors say they believe that the Lyme bacteria, called a spirochete because of its spiral shape, can burrow deep in the body and survive the standard four to six weeks of antibiotic treatment. Patient advocates say they believe the Lyme bacteria remains alive in some people's bodies, wreaking havoc. Some patients may need aggressive antibiotic treatment for months, even years.
Another camp, many of them academic experts, says something else is going on. These scientists say they believe a round of antibiotics will almost always completely kill the Lyme bacteria. They suspect some post-Lyme syndrome may cause problems in a small percentage of patients, and that some of the people who say they have chronic Lyme disease actually have some other illness. Further antibiotics, they say, are useless.
On the pro-infection side are doctors like Steven Phillips, an internist in Ridgefield, Conn. He published a 1998 study in the journal Infection that showed he was able to detect the Lyme bacteria in patients who had undergone six weeks of antibiotic treatment.
"This has been done over and over again. It's not just me. I don't understand why the controversy still exists," Phillips said.
At Jersey Shore Medical Center in Neptune, Martin D. Fried, director of pediatric gastroenterology and nutrition, has detected the spirochete in the gastrointestinal tracts of children who have undergone lengthy antibiotic treatments.
"I've had kids on months and months of antibiotics and done a scope (a microscopic examination of the intestine) and still found the infection," Fried said. He suspects Lyme if a child with abdominal problems also has joint pains and, perhaps, some sudden psychiatric disturbance such as panic attacks or anxiety. Some complain of blurred vision.
"I've been able to show it (the Lyme organism) is there," Fried said. "But I have not been able to prove what symptoms the organism is responsible for."
His colleagues are skeptical, he acknowledged.
"I go to meetings and they look at me and laugh," he said. "But I ask my patients a lot of questions and try to see the whole picture. I had a kid diagnosed with irritable bowel syndrome. I said, 'Have you ever had a rash?' The mother shows me a perfect bull's-eye rash."
A 1996 article in the journal Infection reported the presence of the bacteria in the urine of Lyme patients with arthritis, including many who had undergone intensive antibiotic treatment. Lyme advocates cite other studies, and say the very existence of some 200 support groups and thousands of angry patients underscores the failure of short-term Lyme treatment.
The other camp says the Lyme bacteria is killed with four to six weeks of antibiotics. Doctors in this camp argue that research showing that the spirochete can survive standard antibiotics are mostly small studies published in minor journals. They point instead to a 2001 National Institutes of Health study of 129 chronic Lyme patients. Half got 90 days of antibiotics; half got a placebo. Yet outcomes were the same for both groups. The study showed a powerful placebo effect.
"There is a problem that needs to be identified. But it's clear from the study that more antibiotics are not the answer," said Leonard Sigal, director of the Lyme Disease Center at the University of Medicine and Dentistry of New Jersey -- Robert Wood Johnson Medical School in New Brunswick. He said in rare patients a post-Lyme syndrome may spark an unusual autoimmune response, or that, perhaps, the original Lyme infection has caused some kind of permanent damage.
"My heart goes out to these people," he said. "But I would like to be very sure that, yes, this is due to Lyme. It's possible these people had Lyme, were cured, and now something else is going on."
The dispute leaves sick patients angry and unsure where to go for treatment they believe can make their lives livable again. Many are angry at doctors such as Sigal. Lyme activists have picketed his appearances at conferences and attacked him on the Internet and in Lyme support groups.
Sigal, who has researched Lyme disease for 21 years, says he has simply not seen good scientific evidence of post-Lyme infection and that he does not know the source of the anger against him.
"Why don't you ask the people using my name in vain?" he responded, angrily. "If I don't think somebody has Lyme, I will tell them. ... This nonsense has been going on for years," he said.
The number of Lyme cases in the United States has reached record levels, according to the latest figures from the U.S. Centers for Disease Control and Prevention in Atlanta. The agency reported 17,730 cases in 2000, an 8 percent increase from the year before. In New Jersey, the numbers jumped dramatically -- from 1,719 in 1999 to 2,459 in 2000. The CDC says Lyme cases are underreported.
Experts predict an especially bad tick season this year because of the mild winter.
The scientific debate rages on as patients crowd the offices of so-called Lyme-friendly doctors. One is Andrea Gaito, whose Basking Ridge office is tucked inside an elegant Colonial house. One recent morning Karen Simnor, a mother of four from Middletown, told Gaito about numbness, headaches, blurry vision and memory loss.
"As soon as I stop the antibiotics, I relapse," she said.
Also here is John Holly, a 55-year-old from Barnegat who said he quit his job as a linesman for an electric utility after he developed arthritis related to Lyme disease. Kevin Danyi of Bethlehem, Pa., said he woke up one morning and one side of his face was numb. The 40-year-old estates and trusts lawyer said his memory began to fail. He now shakes and his gait is unsteady. He has tested positive for Bartonella henselae, another tick-borne disease.
"My memory is shot," Danyi said. His 8-year-old daughter Elisabeth tested positive for Lyme disease and has been out of school since January.
Patients say they have gone from doctor to doctor seeking help. Kathy Whitney, a 43-year-old from Dumont, visited four infectious disease doctors after she began to lose her memory two years ago. She started falling down. She needed painkillers to get out of bed to drive her children to school. She could no longer work in her job as transportation coordinator for a company in Bergen County.
She tested positive for Lyme but no one, she said, would treat her. Brain abnormalities showed up on an MRI and doctors told her she had multiple sclerosis. Eventually she came to Gaito, who ordered a new round of tests. One recent day Gaito reviewed Whitney's charts.
Then she tossed them down on an examining table.
"This is a perfect example of how crazy this all is," she said, exasperated. "Here this woman has a spinal tap that shows Lyme. And a test from Stony Brook University comes back positive. She has all the neurological symptoms of Lyme. And doctors are telling her she doesn't have Lyme."
Gaito said Whitney has no biological markers for multiple sclerosis. She prescribed antibiotic treatment.
"Could you call my other doctor?" Whitney asked. "She doesn't think I have Lyme."
Gaito, who is president of the International Lyme and Associated Diseases Society, said the NIH study did not treat people long enough to make a difference. She is now studying the cervical tissue of women with Lyme disease. She also noticed that three of her patients developed multiple myeloma, a serious cancer, and she is now exploring links between the two diseases.
Further complicating the issue are other tick-borne illnesses, such as babesiosis and ehrlichiosis. These diseases can interfere with the treatment of Lyme disease. The New Jersey Department of Health and Senior Services tested 500 ticks in the state and preliminary results found that 30 percent were infected with at least one of the pathogens, the disease-causing agents. But additional tests failed to confirm the original findings and state officials consider the study flawed. They may attempt a second study with new laboratory equipment.
A Hunterdon County doctor, Eugene Eskow, identified another potential tick-borne pathogen, Bartonella henselae. The pathogen is related to cat-scratch fever. Eskow published his work last year in the Archives of Neurology.
Weld of the American Lyme Disease Foundation said "another fly in the ointment" emerged recently with the discovery of another strain of Lyme.
"There is a possibility that this new spirochete may be either working in cohorts with the Lyme bacteria or on its own, causing a lot of the late term cases," he said.
Patient advocacy groups, like the Lyme Disease Association, have been gaining political and financial strength. They are pushing for better health insurance coverage of long-term intravenous treatment, which can cost thousands of dollars each month.
Insurance companies generally cover the standard four to six weeks of antibiotic therapy after an initial diagnosis of Lyme disease. Obtaining long-term therapy, even if prescribed by a doctor, is far more difficult. Companies for the most part refuse to pay, though some leave the door open for exceptions.
"There are varying medical opinions of what long-term treatment means," said Annette Catino, CEO of QualCare Inc. of Piscataway. "We will get second and third opinions. These cases go on forever and there is no valid medical research that substantiates that long-term treatment. So it's not universally covered."
A policy statement by Horizon Blue Cross Blue Shield of New Jersey says the company covers 28 days of intravenous antibiotics with the "possibility" of extended treatment if symptoms exist along with objective evidence of Lyme infection.
AmeriHealth New Jersey, a subsidiary of Independence Blue Cross and Blue Shield of Pennsylvania, does not approve long-term intravenous antibiotic treatment for Lyme disease. "Our policy is based on the best medical evidence of the existing medical literature," said spokesman Butch Ward.
Brendan Peppard, director of research for the New Jersey Association of Health Plans, said companies have been influenced by the large NIH study.
"Long-term treatment is not effective at reducing or eliminating symptoms," he said. He said long-term antibiotic treatment has its own potential complications, such as serious infection.
The Lyme Disease Association also has handed out $1 million in research grants in the past decade. The group recently gave $80,000 to Steven Schutzer, a researcher at UMDNJ who is looking into the genetic makeup of Lyme disease.
Smith addresses state legislatures and state advisory boards from Rhode Island to New Jersey to California. She said government money goes mostly to basic research.
"We want research into chronic Lyme disease," said Smith, who has two daughters who have been treated for the illness.
Her organization, along with the Greenwich Lyme Disease Task Force, donated $675,000 in March to create a chronic Lyme disease research center at Columbia University. The Lyme Disease Association and its five affiliates are now trying to raise an additional $2.4 million for the center.
The Columbia center is directed by Brian Fallon, a psychiatrist who has a $4.7 million grant by the National Institutes of Health to study how Lyme disease affects the brain. Fallon became interested in Lyme disease when previously healthy patients began seeing him for anxiety, depression and memory loss. Some could no longer remember simple words. One of his published studies describes a telephone operator who could no longer transfer calls.
"I began thinking they were physically ill and began learning about Lyme disease," he said. He said brain scans show decreased blood flow to parts of their brains. Diagnosis of the disease is complex. Symptoms mimic those of other diseases. Tests are not definitive.
"The truth is that Lyme is a common illness that if caught early can be easily treated," Fallon said. "But when caught later it can result in a disorder that's harder to treat and can result in anything from mild to severe psychiatric, neurological and rheumatological problems."
Baker of the NIH said new technology may provide answers someday. He does not believe, he said, that evidence points to persistent infection, but the explanation cannot be excluded entirely. He said scientists are working on super-sensitive tests and genetic analyses. Baker wonders if a tiny amount of undetectable Lyme bacteria may produce a dangerous toxin.
He doubts the hypothesis.
"But one never knows," he said. "In this disease a lot of people think their views are correct and everyone else is wrong. I'm trying to keep an open mind."
Next Article: A new strategy in the war on Lyme disease.
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