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Figments of the Imagination?
He sent Sue to an infectious disease specialist at Washington Hospital Center in the District. The lab analyzed her samples and found them to be "amorphous fibers and debris." The overall impression: It was all in her head. She was suffering from what doctors call "delusions of parasitosis." And a big part of the diagnosis was the fact that she'd brought in a sample. That's called the "matchbox" or "Ziploc" sign, named for the containers people tend to use to bring in samples of what they say ails them. Doctors disproportionately diagnose middle-aged women with this condition. Leitao says that three times as many women as men have registered on her Web site as Morgellons sufferers. She speculates that males may be less inclined to register.
Once Gupta received Sue's test results, he called her with the news. He told her that what she needed was not antibiotics, but a psychiatrist. "There are people who hurt themselves, and they can't help themselves," Gupta says. "It's not an unusual situation. These people keep going to doctors -- they doctor-shop -- until they find the answer they want. It's a psychiatric condition that's very difficult to treat."
Sue never saw Gupta again.
Instead, she sought out more than eight doctors and specialists, not because she's crazy, she says, but because she was in agony. All she wanted was relief. She gave her physicians permission to discuss her case and records with a reporter. One doctor told her she had athlete's foot. Another said shingles. Another scabies. One treated her with antibiotics used for Lyme disease, which eased her itching a bit. One told her to go to a movie to get her mind off it. Martin Wolfe, a parasitologist at Traveler's Medical Service in downtown Washington, thought Sue was imagining things when she went to see him. She brought in fiber samples, which he believed fit the delusional diagnosis. Wolfe said he did not see any fibers in her lesions. But Sue complained that Wolfe, like the other doctors she sought out, declined to examine her skin with a microscope.
"In my experience, there's no precedent for this sort of thing happening to human beings, so it's hard to imagine that this is something that's real," Wolfe says, referring to the reports of subcutaneous fibers. Still, he mentions a number of diseases now being tracked that medicine didn't recognize initially, including Rift Valley fever, West Nile virus, tularemia and Ebola virus.
"Is it possible this is something new?" he says. "I can't say it's utterly impossible. But in my mind, it's very improbable."
Phuong Trinh, an infectious disease specialist in Silver Spring, took the samples Sue brought him in little jars. "They looked like dust balls," he says, "things you would see in the rug or the stuff you'd get from your vacuum cleaner." He checked her for every known parasite but found nothing. He, too, told her she was delusional.
"I was labeled crazy," Sue says. "But I was desperate, and no one was listening to me. I was acting delusional when I saw some of these doctors. I was going out of my mind. It's so horrible and bizarre, who could believe it in the world?"
There are a lot of reasons why skin itches. Search the online Merck Manual, the doctor's bible, for "itch or itching," and more than 500 conditions pop up. According to Wrongdiagnosis.com, a clearinghouse of medical information on the Web culled from existing medical literature, there are 703 conditions that can make the skin itch, including diabetes, anemia and iron deficiency, in addition to common disorders such as allergies, viruses such as chicken pox and insect bites. "Swimmer's itch" is the result of an allergic reaction to the larvae of freshwater snails. New research has found that too much calcium in the blood can make the skin itch and that some dental sealants used for fillings can trigger intense itching. Additionally, the site lists 1,742 medications that can cause itching. Those include legal substances such as aspirin, Advil, penicillin and codeine, as well as illegal ones such as cocaine and heroin. "Coke mites" is what the cocaine-induced itching is commonly called, though there are no actual bugs associated with it. Drug or alcohol withdrawal can also cause intense itching. As can the power of suggestion.
And the skin itself is a virtual hothouse of potential infection. Researchers have found that our skin is host to at least 182 species of bacteria, many previously unknown.
So, would it be outside the realm of possibility that these fibers, rather than being delusions, could be something medicine has not seen before? Western medicine has been guilty of closed-mindedness in the past. There is even a name for it: the Semmelweis Reflex, the immediate dismissal of new scientific information without thought or examination. It was named for a 19th-century Hungarian physician who was roundly vilified by his colleagues when he asserted that the often fatal childbed fever could be wiped out if doctors washed their hands in a chlorine solution. He was right. The same knee-jerk rejection of a new idea was true for the bacteria H. pylori, which doctors, researchers and scientists refused to believe was the source of stomach ulcers until the doctor who'd made the connection swallowed some himself to prove it.
And could some diseases, rather than being all in the head, involve both mind and body? Medical researchers are beginning to study the potential link between schizophrenia, a disease of the mind, and exposure to infection in the womb. At the Mayo Clinic in Rochester, Minn., doctors are beginning to discover how imprecise a diagnosis of "delusions of parasitosis" can be. In the past five years, 175 people have been admitted to the clinic with that diagnosis. After thorough evaluations, however, with doctors taking the time to search for underlying problems, only half of those patients left the clinic with that diagnosis intact. Doctors found a very real cause of the itching in the other half. The Mayo Clinic is the only other organization in mainstream medicine, outside of the CDC, to include information about Morgellons in its list of human illnesses.