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Researchers Work to Unravel Skin Medical Mystery

Posted: September 23, 2008

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That attitude is a familiar one to Odom, who visited seven doctors between January 2005 and April 2006, trying to discover what was wrong with her. By that time the lesions had spread to her head, causing her hair to fall out in patches. Some of the doctors she saw diagnosed her with dermatitis, but most thought the problem was psychological and assumed she was scratching her skin and pulling out her own hair. One prescribed Zoloft for depression, while others prescribed the anti-anxiety drug Xanax. (She refused to take the drugs.) One dermatologist (not Meffert) diagnosed her with delusional parasitosis. "He told me, 'You seem a little obsessed. Maybe you should go speak to somebody'," she says.

Odom, a former softball coach and school aide, never doubted her mental health, although she acknowledges she grew "frantic and high strung" after realizing her doctors didn't believe her. She began isolating herself, fearing she might be contagious. "The worst fear for me was whether I was going to infect my children," she says. "I stopped hugging them and kissing them. I had a hard time preparing their food, thinking whatever I'm spewing out of my body is going to get into what I'm cooking."

Odom eventually gave up on doctors, turning instead to alternative treatments, including lots of vitamins, grapeseed extract and other dietary supplements. She also moved her family out of their house, which was next to a landfill. Her lesions started to heal six months ago (though the reasons for her improvement remain a mystery), but she still wants to know why she got sick in the first place. Thanks to the CDC study, which is budgeted at $545,000, she may someday find out.

Those who believe they suffer from Morgellons hail the CDC study as a victory in their grassroots Internet campaign to raise awareness and research funds. In fact, the name Morgellons was chosen not by a doctor but by Mary Leitao, a mother and former medical researcher who says that in 2001 she observed fibers coming out of the skin of her then two-year-old son, who also had lesions and complained of "bugs." After visiting five doctors and failing to get answers that satisfied her, Leitao created a Web site in 2002 and formed the Morgellons Research Foundation. Soon she was flooded with e-mails from people complaining of similar symptoms. To date, more than 11,000 people have registered on her site, many from California, Texas and Florida. Leitao, whose son is now "much improved," hopes the CDC study will convince doctors to take Morgellons patients seriously after years of what many describe as humiliating and dismissive encounters.

Meffert, for one, believes the CDC study is a waste of time and money. "This fibers business, as presented by the fiber-disease community, is nonsense," he says. "They have not convinced me, and, quite honestly, they have pissed me off." The only fibers he has seen, he says, are consistent with animal hair, human hair or textile fibers he finds on most patients. "I saw fibers stuck to the eczema scab of everyone I saw today," he says. "Every patient with oozing, weeping skin has fibers stuck to their skin. Now [nearly] half a million of my taxpayer money is going to research this. I would love to see that money go toward prurigo nodularis rather than to chase fibers."