"Yes ma'am, I was a little bit distraught," recalls Smith, 58, who says he can no longer work because his mysterious ailment has also robbed him of his memory and neurological function. "I tried to grab a hold of it with tweezers and it would not come out. It was quite painful, so I threw up my hands and went to the Emergency Room with my wife."
For Smith, and some 4,000 people across the nation who claim to suffer from similar symptoms, it's the reaching out that has been problematic. The disease, called Morgellons after a reference in a 1674 medical paper, isn't officially recognized by the medical community. Some have suggested that it is a hoax, even a viral marketing campaign for a sci-fi movie. But sufferers say it's real and that there have been a growing number of cases across the nation of people with these painful fibers, skin lesions, crippling fatigue and memory loss. No one knows what causes Morgellons and no one knows how to cure it.
But Smith and his fellow sufferers are itching for answers. That's why they've pressured the Centers for Disease Control (CDC) to assemble a team of scientists who will determine whether this disease is in fact for real. The 13-member team is expected to share their findings within the next two months. "We're not ready to concede there's a new disease," says CDC spokesman Dan Rutz. "But the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it because they're frustrated that there's been no organized way to deal with their suffering."
But even with CDC involvement, Morgellons sufferers like Smith are still frustrated that they haven't been asked for their input. Smith, for his part, says he has offered to ship his own properly prepared Morgellons specimens to the CDC for review, but claims the agency "blew it off." And the South Carolina-based Morgellons Research Foundation volunteered to share research that an Oklahoma State University professor has done on the disease — some of it suggesting it could be contagious — but they say they were rebuffed as well. The CDC has said that it would conduct its own research first, then vet the findings with outside scientists.
In the meantime, Smith says he's just trying to keep up with the simple things in life. Unable to practice medicine for the past year because of neurological and cognitive problems he believes are a result of the disease, he says he is overwhelmed by mundane tasks like housework or hobbies like working in the yard. "From day to day, I can't predict how I'll feel," he says. "It's understandable why many people are skeptical about this illness. The symptoms are so unusual that they just don't make any sense. I even question my own sanity from time to time. But if this is all psychiatric, please give me something to make it go away."