Medical Mystery

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 grass-roots 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."

Randy Wymore, an assistant professor of pharmacology and physiology who directs the Center for the Investigation of Morgellons Disease at Oklahoma State University's Center for Health Sciences in Tulsa, has performed extensive testing on Morgellons patient fibers and is "100 percent convinced Morgellons is a real disease." When he first heard of Morgellons, Wymore thought it would be simple to disprove its existence by examining the fibers. In 2005 he began asking patients, doctors and nurses to mail him samples. In the first week he got 10 packages from five states and was amazed by how similar the bundles of red, blue, back and translucent fibers looked. (He has since received more than a thousand fiber samples.) Over the next nine months he systematically compared them to all sorts of textile fibers, hair and dust from clothing, carpets, medical supplies and fishing and hunting supplies, but he could find nothing similar. He showed the samples to OSU colleagues, who also were baffled.

Intrigued and at loss for answers, he eventually took the samples to the Tulsa Police Department Forensics Lab, where fiber experts Mark Boese and Ron Pogue ran a series of tests on two red and two blue fibers. "In three minutes they decided it was like nothing they had seen before," Wymore says. Comparing the Morgellons fibers to a database of more than 900 known compounds used in textiles, they found no match. Next they heated a blue fiber to more than 700 degrees, which darkened but did not destroy it. They determined the fibers were not fiberglass and did not match anything in their database of 90,000 organic compounds. OSU researchers have found tangled fibers underneath even healthy, unbroken skin in Morgellons patients, which Wymore says rules out the kind of wound contamination Meffert describes.

Wymore acknowledges that some people who claim to have Morgellons may be delusional, but he says all but one of the nearly 30 patients he and his colleagues at OSU have examined do, in fact, have the disease. Like Odom and so many others, he welcomes the CDC study. "My hope is thousands of physicians will go, 'I still don't believe this Morgellons crap, but the CDC is looking into it. I'm willing to give them the benefit of the doubt'."

© 2008