(5/8/04) Medical Community Skeptical
|Frank X. Mullen Jr.|
5/8/2004 07:15 pm
Most doctors interviewed dismiss alleged evidence that medical science has overlooked what patients are calling "Morgellons' disease" and insist that the patients are delusional.
Patients all over the country report the same symptoms of strange "fibers" sprouting from skin lesions. A Texas doctor has reported successful treatment of "Morgellons" patients. And electron microscope images of the mystery "parasites" have appeared on the Internet. Yet experts in dermatology remain steadfast that the patients are not physically ill.
When told of Dr. Bill Harvey's successful treatment with antibiotics of Morgellons' patients in Houston, Dr. Peter Lynch of the University of California, Davis said the "cures" are easily explained by the placebo effect. Patients treated with sugar pills, for example, often get well because they believe they are receiving medicine.
Lynch said 80 percent of patients with delusions of parasites respond to psychotropic medication, an indication their illness is mental.
He doesn't put much stock in Harvey's statements that Morgellons' patients are infested with organisms, or in the electron microscope pictures of "parasites" that appear on two Internet sites.
"Anecdotal evidence doesn't carry much weight," Lynch said. "There are many anecdotes of alien abductions, but that doesn't mean they are true. And as for the pictures, you can see pictures of the Loch Ness Monster on the Internet, too."
Mary Leitao, a biologist and the executive director of the Morgellons Research Foundation, said doctors have become "a brick wall. They have their answer and they aren't open to discussing the possibility they could be wrong."
Leitao, whose young son has Morgellons' symptoms, and other patients repeatedly have asked the federal Centers for Disease Control and Prevention and their state health departments for assistance. The agencies referred those patients to their local doctors and to university medical centers that are equipped to do research.
In Northern Nevada and in California, Morgellons patients dissatisfied with the diagnosis of delusions in adults or common skin diseases in children are often referred to the University of California, San Francisco.
At UCSF, patients said, Dr. John Koo, who is board-certified in dermatology and psychology, often confirms their original diagnosis. Koo authored a paper on the diagnosis and treatment of delusional parasitosis and is a national expert in skin diseases.
In two months, Koo did not return more than a dozen e-mails, faxed letters and phone calls from the Reno Gazette-Journal asking for comment. He also failed to respond to requests from the UCSF press office that he do a 20-minute interview at his convenience.
"The California Department of Health Services tells people to go to university medical centers where they are equipped to do research, but the patients get a replay of what happened with their hometown doctors," said Leitao. "Patients get rubber-stamped and then doctors won't respond to inquiries from patients or the media.
"They are so smug and sure they are right," she said.
Lynch, a dermatologist for 40 years, agreed to discuss the Morgellons patients' theories. But he said no amount of anecdotal testimony or evidence provided by patients matters unless the evidence is gathered scientifically.
"If there were a peer-reviewed study, with 15 or 20 patients who have the same exact thing in their skins, then maybe I'd believe it," Lynch said. "When fiberglass curtains first came out, many people with skin conditions were diagnosed with delusions of parasitosis (DOP). But studies showed these patients had tiny (fiberglass particles) in their skin."
But Lynch said it's unlikely researchers will be interested in getting grants to test theories that experts say can't be true. "The indication is that kind of study won't be fruitful," he said.
Leitao and other members of the Morgellons Research Foundation said they will continue to put a spotlight on the problem and demand a scientific investigation into the illness.
"The saying is 'the disease is the patient,'" she said. "Only those willing to look outside the book move from technician to scientist."
Dr. William Harvey of Houston, who said he successfully treated Morgellons patients and believes the skin infestations are the result of a weakened skin immunity, said doctors can easily see the physical symptoms in people who are branded "delusional." He said when patients complain that "fibers" are coming out of their skin sores, physicians should investigate.
"All the doctors have to do is buy a 30X hand-held microscope from Radio Shack and look," Harvey said. "The facts speak for themselves."