A growing number of Lyme Disease victims whose often crippling symptoms don't disappear after conventional treatment are clamoring for long-term antibiotic treatment that the experts insist is probably a waste of money.
There is no evidence in the medical literature that [long-term antibiotic therapy] is necessary, or that you get a better result" than with the standard two to four weeks of oral or IV antibiotics, said Dr. Allan C. Steere, chief of rheumatology and immunology at the New England Medical Center, in Boston.
Dr. Steere led the 1975 Connecticut investigation that first described Lyme Disease, a tick-borne bacterial infection that begins with a rash, fever, fatigue and pain.
In some people, the illness can develop into severe malaise, heart irregularities, and arthritis. Meningitis or paralysis, memory loss and vision problems are among other problems that have been reported.
Dr. Steere says that when these symptoms become chronic, they are probably due to other disorders, and their perceived improvement on long-term antibiotics is no more than "the placebo effect."
But you can't convince people like Robin Wolfenden that long-term antibiotics don't work. She has received intravenous antibiotics almost continually since August, 1990.
"My joints are not stiff," says the 32-year-old Westminster resident. "I have not had any seizures or paralysis for over a year now. My chest pains have been better." When she stops the drugs, the symptoms come back.
She and hundreds of patients like her have sought relief from a coterie of several dozen doctors -- most in New York and New Jersey -- willing to prescribe long courses of antibiotic therapy for Lyme Disease.
The debate over the value of long-term antibiotics, together with the doubtful accuracy of tests used to confirm the diagnosis, "are probably the most controversial issues in Lyme Disease at the present time," said Dr. David Dennis, coordinator of Lyme Disease research for the U.S. Centers for Disease Control.
They dominated the scientific discussions recently at the Fifth International Conference on Lyme Borreliosis, in Crystal City, Va., and attracted many frustrated Lyme Disease victims who weren't shy about taking on scientists who insist that long-term antibiotics don't work.
One wheelchair-bound man wearing a "Tufts Lies" T-shirt turned up at a press briefing to sharply challenge Dr. Steere, who is a professor of medicine at Tufts University School of Medicine, about his own research results.
"The two sides cannot get together without fighting," said Miss Wolfenden.
Number of cases growing
The number of Lyme Disease cases is growing in Maryland. The state reported 283 new cases last year, up 19 percent from the year before.
Some Marylanders have been suffering much longer. Robin Wolfenden's 13-year medical ordeal began in 1979. Then a 19-year-old camp counselor, she was rushed to a Hagerstown hospital with a 105-degree fever.
Doctors later noted a tiny puncture and surrounding bull's eye-shaped rash on the arch of her foot -- a red flag for Lyme Disease. But few people then knew much about the infection. The doctors' first concern was breaking the fever.
"They thought I had the flu," she said. "I was too sick to know what was going on."
After five days, her temperature was normal and she thought her illness was behind her.
It wasn't. Since then, recurring fatigue, arthritis and heart problems have halted her training to become a teacher for the deaf, and left her on crutches. Today, she is nearly housebound, living with her parents in Westminster.
Her only relief has come from long-term intravenous antibiotics, which she receives under the supervision of Dr. John Drulle, of the Jersey Shore Medical Center in Neptune, N.J.
Dr. Drulle is himself a Lyme victim. So are his three children. He says he has seen 3,000 Lyme Disease patients in seven years, some from as far away as Texas and Nebraska.
Explaining the remission of symptoms as a "placebo effect" is "bizarre," he said. "It's more logical to assume the antibiotic is doing it."
Dr. Drulle and his colleagues say they're fighting active Lyme Disease infections. Research they presented at a conference last month appeared to show laboratory evidence of continuing infection in 13 of 25 patients who had undergone conventional treatment for Lyme Disease. Doubters like Dr. Steere, he says, are just "reluctant to eat crow."
Lyme Disease support groups say official doubt about long-term therapies has caused insurance companies to balk at paying for it. It can get costly. Miss Wolfenden said her family and Blue Cross/Blue Shield of Maryland have spent close to $250,000 on her care over the past four to five years.
Mary Anne Heckwolf, operations director for the Blues' individual market division, said she knew of no Maryland cases in which long-term treatment has been denied. Such cases remain "extremely rare" here.
They aren't rare in New Jersey, however. Elaine Cinelli, spokeswoman for the Prudential Insurance Company in Newark said cases are reviewed individually, but "we don't think extended IV treatment is appropriate treatment. We view 28 days [of treatment] as pretty much of a guideline."
Some Prudential customers whose treatment has exceeded 28 days are no longer reimbursed, she said. The policy was formalized late last year.
Transmitted by ticks
Lyme Disease is caused by a microscopic, corkscrew-shaped bacterium called Borrelia burgdorferi. The bacteria are picked up by pinhead-size deer ticks feeding on white-footed mice. When the ticks bite people, they transmit the bacteria.
Within eight or nine days of the bite, a bull's-eye-shaped rash, called erythema migrans, develops at the bite site. It is the most reliable indicator of Lyme Disease, but is absent in 20 to 40 percent of the people bitten.
Scientists are working to create a vaccine for Lyme Disease. A team led by Yale immunologist Dr. Richard A. Flavell this month reported that a genetically engineered protein called OspA did stimulate production of antibodies in healthy mice that protected them against Lyme bacteria from infected ticks. Those antibodies had the surprising "bonus" effect of killing off the Lyme bacteria in the ticks that bit them.
More than 9,300 cases of Lyme Disease were reported to the Centers for Disease Control in 1991.
But the real number of cases is surely much higher. The CDC only counts patients who have both the right medical history and symptoms, and a positive blood test for Lyme antibodies.
The CDC, however, has found the reliability of the antibody tests only "poor to fair," producing large numbers of false positive and false negative results.
"These tests should only be used as an adjunct to clinical diagnosis," said Dr. Dennis, coordinator of the CDC's Lyme Disease program.
"If the erythema migrans rash is not there, [doctors] are left with a viral-like illness that they don't know what to do with, and they look to the lab to help them out," said Dr. Marc G. Golightly, of the State University of New York, Stony Brook.
Sympathetic doctors like Dr. Drulle have come to suspect that Lyme bacteria must penetrate parts of the body, such as joints and tendons, that receive little blood supply.
The organisms "hide" there out of reach of antibiotics, they believe, then re-invade the rest of the body when the therapy ends.
Local physicians refused to treat Ellicott City veterinarian Dr. Wendy P. Feaga for the Lyme Disease she believes she contracted in 1977.
She had endured 10 years punctuated by eye infections, debilitating fatigue, a bladder infection, a miscarriage, swollen knees and arthritis. But a 1988 blood test was negative.
"I was suffering from paralysis with this disease. I would collapse and lay there like a heap on the floor," she said. Four doctors recommended that she see a psychiatrist.
Finally, in 1989, Dr. Feaga treated herself with antibiotics for a swollen knee. She saw such improvement in her symptoms that she became a believer. She eventually connected with Dr. Drulle in New Jersey and received a positive test result. She then began long-term antibiotic therapy with drugs that she prescribes for herself.
"I have access to human-grade antibiotics," she said. "I don't think it's anything unethical. I think it shows desperation. . . . In January I came off [the antibiotics] and didn't last more than a week. I was so weak that I could barely stand."
It took Robin Wolfenden two years to find a local physician who would work with Dr. Joseph Barrascano, of Easthampton, L.I. in prescribing long-term IV antibiotics. It is administered through a permanent IV tube in her chest.
OE"I wouldn't say it's a normal life," she said. But she feels better.
Danger of misdiagnosis
Dr. Steere has no doubt that patients like Dr. Feaga and Miss Wolfenden are suffering from something. But he does not believe they have active Lyme infections, or that they feel better because the drugs they take are killing Lyme bacteria.
"The greatest reason for treatment failure [with short-term antibiotics] is misdiagnosis," he said.
Other explanations for the persistent symptoms may be Chronic Fatigue Syndrome, which has been linked to brain damage and a common virus, or Chronic Pain Syndrome (CPS), he said.
People with CPS, or fibromyalgia, experience pain and tender spots. It sometimes follows infections, including Lyme Disease, but also thyroid disease or even physical or emotional trauma. It's poorly understood, but the disease is thought to be triggered in the brain.
Some cured Lyme patients may continue suffering from permanent nerve damage, Dr. Steere said, a reaction to dead Lyme bacteria, or simply a very slow recovery. But none would get any real benefit from long-term antibiotics.
For them, he believes, the answer lies somewhere else.
"It's a tremendous problem to have chronic pain that no one understands very well," Dr. Steere added. "So there's a great need to understand why this is happening."
If you're bitten
* Quick removal is important, but don't panic. Most deer ticks aren't infected. Plus, they feed for 24 hours, and transmit the bacteria only when they're through.
Mangling, burning or squashing the tick can increase your risk by spreading the bacteria. Carefully pull the ticks away from the skin with sharp tweezers and save them in a closed container with a blade of grass. If you develop a rash, identification of the tick will aid diagnosis.
* Disinfect the site and wash your hands.
If you develop a rash, fever, chills, aches or muscle pain within two to 10 days of the bite, contact your doctor immediately. Most cases are mild, but the earlier you seek treatment, the greater the chance of avoiding more serious complications.
FOR MORE INFORMATION
For more information on Lyme Disease contact:
American Lyme Disease Foundation, 3 International Drive, Rye Brook, N.Y. 10573.
The Lyme Disease Foundation, PO Box 462, Tolland, Conn. 06084.
* Maryland Lyme Support Group, 13151 Tridelphia Road, Ellicott City, Md. 21042.
Minimizing chance of exposure to an infectious deer tick
To prevent Lyme Disease:
* Avoid exposure.
* The highest incidence of Lyme Disease is in New Jersey, New York, Connecticut and Pennsylvania, but incidence in Maryland is growing. The infectious deer tick can be active all year long, but 90 percent of all Lyme Disease infections occur during June and July, when the tick nymph is most active.
* Avoid forests, grassy areas and suburban wood-lots where deer and wildlife, which may carry deer ticks, are abundant.
* If you must frequent these areas,wear long pants. Seal the space between pants and socks with tape, or by pulling socks up over the pant legs.
* Insect repellents containing DEET will keep ticks off clothing for several hours, but DEET is less effective on skin. Avoid heavy use; in high concentrations, DEET has been linked with toxicity.
* Once indoors, check yourself, your children and pets for ticks. Small enough to fit inside the "D" in "DIME" on a U.S. 10-cent piece, they won't be easy to spot. Light-colored clothing will help. Flush ticks down the toilet.