Chicago Tribune

AUSTIN, Texas – The symptoms sound like something straight out of a horror movie: crawling and biting sensations all over the skin, dementia and insomnia, painful sores that never heal and, most terrifying of all, mysterious tangled fibers pushing out through the open wounds.

Thousands of victims concentrated in Texas, California and Florida claim to be afflicted by the debilitating malady, for which there is no known cause and no certain cure. One young Austin man apparently committed suicide when the agony grew too acute, while many others, spurned by disbelieving doctors, are suffering in silence.

But whether the symptoms constitute a frightening new disease suddenly surfacing across the nation, or a case of mass hysteria abetted by Internet message boards and breathless local TV news reports, is a question that experts at the federal Centers for Disease Control and Prevention in Atlanta are urgently trying to answer.

Depending on the CDC’s conclusions, the ailment known as Morgellons disease might soon displace Ebola and bird flu as the world’s newest nightmare disease. But unlike those illnesses, which are still far from U.S. shores, Morgellons cases have already been reported in every state, as well as in Europe, Japan, Australia and other countries.

“We don’t know yet what it is, so our first aim is to try to characterize it scientifically,” said Dan Rutz, a CDC spokesman. “There’s a concern that there’s an infectious process going on. It would be very disturbing from a public health standpoint if that turns out to be case. We don’t have any evidence to support that, but we are approaching this with an open mind.”

For the moment, many health officials consider Morgellons a puzzling set of symptoms; only if the CDC experts can establish a definitive diagnosis and rule out other causes would Morgellons rise to the level of an official disease.

But whatever it is, more than 4,500 sufferers of the syndrome, the symptoms of which were first described in France more than 400 years ago, have registered with the Morgellons Research Foundation, an advocacy group founded by a South Carolina mother whose 2-year-old son came down with the mysterious symptoms. Morgellons researchers believe the actual number of those afflicted is far higher.

One of the most prominent victims is former Chicago White Sox pitcher Billy Koch, who along with his wife Brandi was stricken several years ago, Brandi Koch confirmed.

Morgellons victims have no doubt that the joint pain, fatigue and self-described “brain fog” they are suffering is real. From the crusty lesions that break out all over their bodies, they say they routinely yank blue, red, black and translucent filaments, some of them as long as an eyelash and others visible only under a microscope. Sometimes, instead of fibers, they extract small black granules resembling tiny peppercorns.

“When the lesions and fibers appear, it feels like there’s something stinging you from inside your skin,” said Stephanie Bailey, 35, an Austin resident who’s on medical leave from her job with the Texas state environmental agency. “It sounds so unbelievable that people just think you are nuts. But this is not something I am making up.”

Yet that is precisely what skeptics insist the Morgellons sufferers are doing.

Some experts in dermatology and psychiatry say the hallmark traits of Morgellons – the crawling sensations, the mystery fibers and the penchant of sufferers to obsessively collect samples of the granules and fuzz to show their doctors – closely resemble a well-known psychiatric condition known as delusions of parasitosis, the belief that tiny bugs are burrowing beneath the skin.

The lesions are self-inflicted, caused by incessant scratching at the imagined parasites, the skeptics insist. The fibers are nothing more than lint from clothing, tissues or bandages. And the hypochondria is being spread thanks to sensational “sweeps week” TV news reports and Web sites, which reinforce the beliefs of psychologically vulnerable people that they have contracted a new disease.

Plugging the terms “lesions and fibers” into an Internet search engine yields links to hundreds of Morgellons-relating postings, as well as wild theories that the disease is the result of a secret government experiment gone awry, chemicals sprayed from the sky or contaminated bottled water from France.

“In dermatology, we speak about something called an “outside job,’ which is a skin eruption made by the patient himself,” said Dr. Noah Scheinfeld, an assistant professor of dermatology at Columbia University in New York and an expert on the psychiatric origins of certain skin disorders. “When you look at the pictures of these Morgellons lesions, they are classic for that.”

The diagnosis is complicated still further by the fact that some Morgellons patients do indeed exhibit delusional behaviors. But Morgellons believers say such psychiatric symptoms are a result of the torments inflicted by the disease, not its cause.

That’s what Lisa Wilson said happened to her 23-year-old son, Travis, a former drug user who she said suffered from insomnia, fatigue, lesions and fibers sprouting from his fingers for more than a year. Desperate for relief, Travis tried burning the fibers out of his skin with matches and dousing them with household chemicals, Wilson said. Ultimately, he came to believe he was being followed by the FBI and ended up being committed to mental hospitals nearly a dozen times.

On April 23, Travis died of an overdose of more than 50 pills, including painkillers and sedatives, an apparent suicide.

“The only pre-existing condition he had was depression,” Wilson said. “It was the Morgellons that made him crazy. You could see the fibers coming out of his fingers, but the doctors wouldn’t examine him.”

Mary Leitao, who started the Morgellons Research Foundation (www.morgellons.org), said she long ago grew accustomed to being doubted by doctors whenever she sought help for her son, who is now 7 and still suffering from recurring lesions.

“They suggested that maybe I was neurotic,” Leitao said of her attempt to have her son examined by infectious disease experts at Johns Hopkins Hospital. “They said they were not interested in seeing him because I had Munchausen Syndrome by Proxy” – a mental illness in which a parent fabricates a child’s illness or intentionally injures a child.

But Dr. Raphael Stricker, a San Francisco Lyme disease specialist, said he has no doubt about the reality of Morgellons disease, which he and others suspect may be related to Lyme disease because many Morgellons sufferers also test positive for the tick-borne illness.

“This is a real phenomenon,” Stricker said. “A lot of these patients are really very sane, down-to-earth, normal people who aren’t psychotic or crazy and yet have these bizarre problems with their skin. After you see that over and over, you have to start taking it seriously.”

Controversy is swirling around other aspects of Morgellons as well. A New Mexico physician who was treating Morgellons patients with an insecticide paste made of ground-up seashells lost his medical license in April for improperly prescribing narcotics.

And an Austin nurse-practitioner who put Morgellons sufferers on long-term antibiotics, in violation of Texas medical protocols, had to leave the state when her sponsoring doctor declined to endorse her methods.

“I’m just experimenting with treatments, shooting in the dark here,” said the nurse, Virginia Savely, who has seen more than 150 Morgellons patients and now practices in San Francisco under Stricker’s auspices. “When I hit on a combo that works great for one person, it’s not as though it works for the next person.”

Meanwhile, the strange fibers that distinguish Morgellons remain the subject of intense debate.

The author of a Web site devoted to debunking Morgellons disease, www.morgellonswatch.com, has posted pictures of magnified fibers that look exactly like the pictures of filaments shown on the Morgellons foundation Web site. In reality, the debunker wrote, the fibers were pulled from “a healing zit” and came from a “combed cotton and polyester black shirt.” The author declined an e-mail request to reveal his identity.

Yet Dr. Randy Wymore, a researcher at Oklahoma State University-Tulsa and the volunteer research director for the Morgellons foundation, said fiber samples he has examined from dozens of patients resemble no other man-made or environmental material he can find.

“When I started this, I was skeptical,” Wymore said. “I didn’t think there was any possibility that these fibers could really be in people’s skin. My expectation was that I was going to be telling them this is nylon or wool or cotton. But the opposite was true – I couldn’t scrounge up a single sample that resembled these fibers at a microscopic level.”

Moreover, Wymore said, with the aid of a powerful microscope he has examined some Morgellons fibers lodged beneath the unbroken skin of some patients.

“When dermatologists say these patients are either intentionally scratching themselves or it’s just fuzz from their clothing, well, there’s no way that would be visible under unbroken skin,” Wymore said. “Do I have any clue what’s actually going on here? Absolutely none. But there’s no question about the fibers: They are not just environmental contaminants.”