It began when Mary Lei-tao’s 2-year-old son Drew pointed to a lesion on his lip and uttered a simple word: “bugs.” “So I started looking at his skin microscopically,” says Leitao, a homemaker. “I noticed these fibers.” She posted pictures on the Internet; before long, she says she heard from hundreds of people who also believed their skin was crawling with some kind of tiny fiber. Problem was, few doctors believed them.
“It happens at the brain level, not at the skin level,” says Peter Lynch, professor emeritus of dermatology at the University of California, Davis. “The patients feel there is something in their skin, and they can’t rest until they get it out.” In most cases, he says, it’s a delusion that patients can end by taking antipsychotics. Nancy Hinkle, an entomologist at the University of Georgia at Athens, likens the phenomenon to a delusional psychosis in which people think bugs are crawling on their skin. “Nothing I can do will dissuade them.”
But Leitao, 48, a suburban Baltimore mother of three who studied biology in college, never gave up her belief that the “bugs” her son felt six years ago were real. She began researching the symptoms and gave them a name—Morgellons, after a skin condition observed in 17th-century France. In 2004, after spotting symptoms in her three children, and dealing with non-supportive doctors, she established the Morgellons Research Foundation, which claims that more than half of Morgellons patients suffer from mental illnesses like bipolar disorder or depression. “The medical profession has a history of horrible prejudice whenever something new comes along,” says nurse practitioner Ginger Savely, who sees about 200 Morgellons patients at her San Francisco office. She prescribes a cocktail of antibiotics and antiparasitic and antifungal medications as a cure: “You can’t just pronounce sufferers crazy.”
John Amber, 51, of Little Neck, N.Y., says he felt as if bugs were crawling on his legs and head and noticed a fuzzy blue-green material like lint poking out of his skin. Alarmed, he called an exterminator and obsessively washed his clothes. The creepy feeling worsened, so he went to a dermatologist, who gave him a topical cream. Still in agony, Amber returned to the dermatologist and received a shock. “She said, ‘Nothing is wrong with you,'” he recalls. “She looked at me like I was crazy.” Since then, he’s tried homemade remedies like wrapping himself in plastic bags or sleeping outdoors.
Not all medical professionals dismiss the syndrome. The Centers for Disease Control and Prevention in Atlanta recently put together a task force of environmental, toxicity, pathology and psychiatric specialists to study the condition. “Maybe for some people this is purely delusional, but we don’t think that explains the problem for everybody,” says CDC spokesman Dan Rutz. “These people carry a significant burden of stress.”