By Stephen Young
By Stephen Young
By Stephen Young
By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
He paces the halls, careful not to wake his mother, who is sleeping downstairs. It's a big house--3,000 square feet--but sometimes she hears him stirring, playing his guitar, watching TV or writing in his online journal. Anything to keep his mind off the "nonstop itching/biting/crawling" sensation under his skin.
In many ways, he's a normal 22-year-old, albeit a bit troubled. He is of average height and build, with the pale skin of someone who spends most of his time in front of a computer. He's struggled with drug addiction, loneliness and depression, and he and his mom have had their issues, although things are better now. He's taking classes at the community college in Austin where his mom works as a software engineer, and he's made some friends there. Maybe he'll move out soon.
If only he could get better. He's always been sickly, even as a boy growing up in Washington state, but this is unlike anything he and his mom have seen before. The itching isn't even the worst of it. He has lesions all over his thin, frail body, on his legs, his arms, the back of his neck. His sweat is black, thick as tar. Something is terribly wrong with him.
He knows what it is, even if most doctors don't acknowledge it as a real disease. It's called Morgellons. He discovered it on the Internet in January 2005. All over the country, but especially in Texas, Florida and California, people are diagnosing themselves. They are ranchers and lawyers and bartenders, people from all walks of life, in cities big and small. And they have the same symptoms--the itching, the lesions, the fibers.
Yes, the fibers. That's really the worst part. Fibers sprouting from his skin. Thin, like fishing wire, sometimes blue or red, growing from his body. One night he looked down and, to his horror, saw a spaghetti-like strand sticking out of his chest. He called out to his mom, who found a pair of tweezers and tried to pull it out, but the fiber sunk back, like it had a mind of its own.
He figures he caught the disease in Mexico, perhaps from drinking the water. Or maybe he caught it because he has Lyme disease, like his mother. There are all kinds of theories on the Internet: Maybe it came from "chemtrails"--the exhaust plumes from jet planes--or chiggers or a government conspiracy. He doesn't know what to believe. He has a disease with no known cause and, worse, no known cure. Beyond the bizarre physical symptoms, it makes him weak and forgetful. His left hand sometimes trembles, he loses his sense of smell, he goes days without sleeping or eating.
Morgellons, a disease that may not even be real, is slowly killing him. And although he doesn't know it yet, he will become its public face.
"It's unlike anything we've seen to this point," says Ginger Savely, a San Francisco nurse practitioner who has treated more than 125 Morgellons patients, most of them from Texas. "It's so different that it sounds kind of...well, it's scary because it's so different. Some of the things I've seen, it could really make you doubt your own sanity." Wilson's symptoms, for example--lesions, black sweat, colored fibers sprouting from the skin--are some of the most commonly described symptoms. Other side effects include hair loss, "brain fog," crippling fatigue and, occasionally, the disintegration of teeth.
Two of the largest clusters of the disease, according to the Morgellons Research Foundation, are in the Houston and Dallas areas. Judy Egan, a 55-year-old bar manager who lives near Arlington, says she and her husband contracted Morgellons about a year ago after handling produce at a farmers market near Mansfield. Both have seen strange fibers coming out of their skin. Others who have the illness are afraid to speak publicly about it, fearing friends and co-workers will think they're nuts.
"If somebody would have told me about this two and a half years ago I would have thought, well, too much LSD for you," says an Allen middle school teacher who didn't want to be identified. "You know, this doesn't sound like anything from our world. It's so out there."
Mainstream medicine dismisses the disease as imaginary, and most Morgellons sufferers have been diagnosed with delusional parasitosis, a psychiatric condition in which patients believe they are infested with parasites. Psychiatrists have noted that patients with this disorder will sometimes dig out small fibers--which are most likely peripheral nerve endings--to prove that bugs are in fact crawling under their skin. Other doctors suspect the fibers are actually from clothing, carpet or upholstery.