By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
By Eric Nicholson
"It's probably just a variant of delusions of parasitosis," says Dr. Dan Eisen, a University of California at Davis dermatologist. "It's fairly common. Most dermatologists have seen people who complain that they have bugs crawling under their skin. This sounds like the same thing, except they're not complaining of bugs, they're complaining of fibers."
Doctors such as Eisen also say it's unlikely that the varied symptoms associated with Morgellons--from lesions to joint pain to loss of vision--could all be caused by the same disease. What's more likely is that as word of Morgellons spreads through the Internet and television news coverage, more people become convinced they have it. If this is the case, then Morgellons is one in a long line of weird diseases that have swept through populations, only to disappear without a trace once public concern subsides.
Until recently, public health officials more or less ignored Morgellons. Now, after more than a year of fielding complaints and inquiries from around the country, the Centers for Disease Control is forming a task force to investigate. What they will find is anybody's guess. Perhaps Morgellons is an imaginary disease. Or perhaps, as some doctors have suggested, it is the scariest thing ever to hit America.
An infectious disease specialist diagnoses him with a rare form of scabies and prescribes an anti-fungal cream. The boy's mother, Mary Leitao, is assured the rash will clear up.
One night while spreading the cream on her son's arms, Leitao notices something coming out of his skin. It looks like balls of fuzz or maybe dead bugs. Even under magnification, she can't tell exactly what she's looking at. Maybe it's scabies excrement, she thinks.
As her son's health deteriorates, Leitao becomes frustrated with her dermatologist, who doesn't know what's wrong with the boy. So Leitao turns to the Internet. On a scabies message board she details her son's condition. "If your son has fibers coming out of his skin, you're in really deep weeds and we're sorry," comes the response. The good news is she isn't alone. There are others who have the same thing, all over the country.
One day while researching an obscure 17th-century medical text, Leitao comes across a disease called Morgellons, defined by "strange hairs" that break out on the backs of children, causing coughing and convulsions. To Leitao this sounds similar to her son's condition. From then on, in conversations and on her Web site, her son's condition is called Morgellons.
Word spreads. Other Web sites and message boards warn of Morgellons, and the theories take off. Perhaps it is caused by chemical spills or bio-terror or even alien abductions. On a radio program called Coast to Coast--popular among people who believe in UFOs and ghosts--a New Mexico doctor reports that a former CIA agent told him the disease was caused by the French. A botched government experiment, he says, contaminated the water. All Evian drinkers are at risk. "I'm of the firm belief that this is the beginning of a worldwide epidemic," the doctor later declares.
The mainstream media take notice. Television stations in Idaho, Alabama and California do stories on Morgellons. A station in San Francisco interviews Billy Koch, a former closer for the Oakland A's who says he has the disease. Doctors start calling. First from Houston, then from Georgia and then from San Francisco. All of them believe the disease is real.
In 2004, Leitao forms the nonprofit Morgellons Research Foundation. Two members of its medical advisory board, Dr. Raphael Stricker and Ginger Savely, have been at the forefront of the "Lyme wars," an ongoing battle over a chronic strain of Lyme, which some doctors say does not exist, and how to treat it. Both have been instrumental in convincing lawmakers that chronic Lyme is a growing threat and that more money should be spent to better understand it.
Despite their best efforts, the Morgellons Research Foundation is unable to drum up the same kind of support. Senator Dianne Feinstein of California writes a letter in their behalf, asking the CDC "what, if any, actions" it has taken regarding the disease. Senator John Cornyn of Texas asks the same of his state health department. In response, Leitao gets encouraging phone calls and letters from public health officials, but they ultimately go nowhere.
Then, in 2005, the Morgellons movement gets a boost. An assistant professor of pharmacology at Oklahoma State University named Randy Wymore, who has built much of his career on studying obscure diseases, wants to research Morgellons. The fact that a professor at a medical school would even consider studying the disease is great news for Leitao. It's exactly what an organization in need of credibility has been waiting for.
At the request of the MRF, patients and doctors begin sending Wymore samples of fibers they have extracted from their skin. The fibers all look very similar, but Wymore is skeptical. So he begins to gather his own samples, from Wal-Mart and carpet stores, from horses, dogs and cats, even from a llama at his daughter's elementary school. Over time he becomes more and more convinced that the fibers people are sending him are unlike anything seen before.