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.