Medical Mystery; is it a cognitive disorder? You be the judge?
After years of debate and controversy, the CDC is finally looking into the mysteries of Morgellons, an unexplained and debilitating skin condition that many doctors don't believe exists.
Newsweek Web Exclusive
Feb 7, 2008
Deanna Odom was either delusional or she was suffering from a bizarre and devastating illness that doctors cannot treat. In December 2004 the 36-year-old mother of two teenagers started developing lesions on her arms, legs and backside. At times, she says, it felt as if needles were stinging her. And then she noticed strange, colored fibers emerging from her skin. "They would almost look like dust fibers," says Odom, who lives in Torrance, Calif. "I would put my hands together and my hands would puff off the fibers. Combing my head, you could see the fibers emerging. It's literally almost out of a sci-fi movie. You think, 'This isn't happening'."
After seeing a TV news report in February 2005, Odom became convinced she was suffering from Morgellons, an unexplained condition that has sparked debate and controversy within the medical community. Some doctors and researchers believe Morgellons is an emergent disease characterized by nonhealing skin lesions, crawling or itching sensations, fibers and black granules emerging from the skin, and neurological impairments such as short-term memory loss. The problem, for Odom and thousands of others who believe they suffer from the disease, is that most dermatologists think there is no such thing as Morgellons. They attribute the suffering of patients like Odom to delusions or anxiety-driven self-mutilation.
Now the Centers for Disease Control and Prevention (CDC) have launched their first study of Morgellons, which may provide some answers as early as next year. Michele Pearson, the CDC's principal investigator, says the agency got involved after receiving an increasing number of calls—averaging about 100 a month since November 2006—from patients, doctors, public health officials and members of Congress asking the CDC to look into Morgellons, which the agency describes as "an unexplained skin condition." Patients in the study will undergo medical, dermatological and psychological examinations, including blood tests and skin biopsies. The study will be conducted in conjunction with Kaiser Permanente's Northern California Division of Research. Any fibers collected will be analyzed by the Armed Forces Institute of Pathology, which has both forensics capabilities and an environmental research lab. "We are absolutely going into this with an open mind," Pearson says.
But many doctors have already formed their own opinions about Morgellons. Jeffrey Meffert, a dermatologist and associate clinical professor at the University of Texas Health Science Center in San Antonio, is a vocal Morgellons skeptic, often debunking the disease in presentations to colleagues. He says he sees at least one patient a month claiming to have Morgellons, but he diagnoses most of them with prurigo nodularis, a condition sometimes fueled by anxiety and characterized by chronic itching and scratching, which creates hardened nodules on the skin. More rarely, he says, patients have the mistaken belief that they are infested with parasites. "People with delusional parasitosis are very functional and rational except when it comes to this one issue," he says. "Many dermatologists would rather these patients never show up, because they don't feel they have the time to spend. No one knows how to deal with them."
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 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'."