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Bizarre Morgellons condition: Is it real?

/ Source: The Associated Press

Imagine your body pocked by erupting sores. The sensation of little bugs crawling all over you. And worst of all, mysterious red and blue fibers sprouting from your skin.

It may sound like a macabre science fiction movie, but a growing legion of Americans say they suffer from this condition. And now the U.S. Centers for Disease Control and Prevention is investigating.

Some doctors dismiss these patients as delusional. But the condition — called Morgellons — has caused a small frenzy on the Internet, with hundreds of people pleading for help.

"Sometimes the government doesn't want to panic people until they can figure out a definitive cause," said Pat Boddie, a 62-year-old Alabama woman who said she's had Morgellons for 14 years.

"They're trying to figure out if this is going to be an epidemic. I hate to tell them, but it already is," she said.

The CDC has been receiving as many as 20 calls a day from self-diagnosed Morgellons patients. The agency has been urged to investigate by, among others, U.S. Sen. Dianne Feinstein of California.

"We're going into this with an open mind," said Dan Rutz, spokesman for a CDC Morgellons task force that began meeting in June.

But so far there is no evidence of an infectious agent, and health officials say there is not yet enough evidence even to call it a disease.

People claiming to have Morgellons report a wide variety of symptoms, ranging from joint pain to irregular bowel movements. But most describe crawling sensations along the skin, sores, fatigue, "brain fog" and the appearance of small or microscopic fibers on or under the skin.

Some say they've suffered for decades, but the syndrome did not get a name until 2002, when the "Morgellons" was selected by Mary Leitao, a South Carolina woman who founded the Morgellons Research Foundation.

It came from a 1674 medical paper that described symptoms somewhat like Morgellons, Leitao said. "I never expected it (the name) to stick," she said.

In-fighting on organization's board

Leitao's organization has become a leading source of information and research advocacy, but it too has become controversial.

Last week, at least three of the eight members of the organization resigned over disagreements with Leitao, the executive director, about how she's been running the foundation. One member — the board's chairman — sent a letter to the U.S. Internal Revenue Service, saying Leitao had failed to produce requested financial records and he voiced suspicions of financial impropriety.

Another board member who resigned, Dr. Greg Smith, a Gainesville, Ga., pediatrician, had recently posted a donations-soliciting letter for the foundation on an Internet site frequented by Morgellons patients. Last week, he posted a retraction.

"I cannot in good faith ask anyone to contribute to the foundation," Smith wrote.

Leitao described the controversy as "a power struggle" and said she's done nothing illegal.

Also resigning from the organization was Randy Wymore, an Oklahoma State University assistant professor of pharmacology. He was the organization's director of research.

Wymore had initiated the relationship last year. But because of the in-fighting he said he decided to distance himself. "The research I'm doing is not affected by this," Wymore added.

Until the CDC task force, Wymore was seen as the most reputable scientist to research Morgellons, although he was trained in molecular biology, not clinical disease or fibrous materials.

Forensics lab examines fibers

He recruited two Oklahoma State faculty physicians. They tweezed fibers from beneath the skin of some Morgellons patients who visited the Oklahoma State Center for Health Sciences in Tulsa in February, Wymore said, and sent those samples to the Tulsa Police Department's forensic laboratory.

The police checked the samples against carpet and clothing fibers and other materials, and conducted chemical analyses and other tests. Nothing matched, said Mark Boese, the police lab's director.

"How it is being produced, I don't know," Boese said. He theorized the fibers could be produced by human hair follicles that somehow encapsulated pollutants processed by the body.

Mind or body?

Some doctors believe Morgellons is produced by the mind, not the body.

"I think of Morgellons as a piece of a larger phenomenon — delusional parasitosis," said Dr. Annette Matthews, a psychiatrist at the Oregon Health & Science University in Portland.

Delusional parasitosis is a psychosis in which sufferers believe they are infected with parasites. Often the patients have a real-life problem with scabies, lice, or some other tiny attackers, but then imagine they are continuing to plague them, Matthews said.

Asked about reports of multiple Morgellons cases within a family, Matthews said delusions are transmissible, the psychiatric term is "folie a deux," for instances in which people come to share a delusion.

Some people will biopsy themselves, or seek large quantities of antibiotics, herbal remedies, industrial bug killers and other expensive and potentially harmful treatments, she said.

The CDC's Rutz said there may be several subgroups among the people who identify themselves as Morgellons sufferers. One group may have delusional parasitosis, but another may have something else.

CDC task force investigates

The 12-person CDC task force includes two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic disease. The group is developing a case definition of Morgellons.

It's impossible to say how many people have Morgellons without a commonly accepted way to define it. The Morgellons Research Foundation believes the number is at least 5,500, based on the number of families registered with the organization's Web site.

Hopefully, a CDC case definition will lead some physicians to stop treating Morgellons patients like they're crazy, said Smith, the Georgia pediatrician and a Morgellons sufferer.

"A lot of physicians think that if it's not in the textbooks, it's not real," said Smith, who said a fiber once slid across his eyeball and then burrowed in.

Verna Gallagher, 48, said she's been seeing a dermatologist for nearly a year. "(But) he doesn't believe in Morgellons. He said 'That's not a real thing,'" said Gallagher, of Roseville, Calif., near Sacramento.

But while her doctor dismisses the fibers as lint, Gallagher says he is concerned that she may become suicidal. "I cry, and he says I have to live my life" and tells her to write down things that she likes to do.

Meanwhile, she says she is plagued by tiny dark specks and fibers that infest her house. She's paid for exterminators, taken antidepressants, bathed in Borax and spent hundreds on vitamins, garlic pills and other potential remedies.

"Nothing's helped," she said.