All in the head?

Imagine one day you see strange fibres, usually clear but sometimes blue, red or black, protruding from your skin, like a piece of spaghetti, or a hair where none is supposed to be.

You itch all over, lesions appear and you have an unnerving, infuriating feeling that bugs are crawling under and on your skin.

"Brain fog" and short term memory loss set in. You are plagued by chronic fatigue. You can't work or go outside much because you don't know if you're infectious and anyway, you're too tired.

Doctor after doctor sees the evidence you bring to your visit - the fibres and the scabs - as the "matchbox" sign that you are imaging things because sufferers of delusional parasitosis traditionally bring their "proof" in a matchbox.

Still the lesions appear, and the fibres. Sometimes you see things that can only be called "fuzzballs," or sometimes grains of sand, or other times, black granules. It hurts. You try to pull the fibres out when you can see them but it doesn't help. Years later, you're still searching for a cure. You might get temporary relief from powerful, long-term antibiotics but as soon as you stop taking them, the symptoms return.

It may sound like a scene from Alien, an elaborate hoax or a biblical parable you forgot. But for an estimated 3,500 self-reported cases, many of them in California, Florida or Texas, it is 21st century reality. These sufferers have registered at a website that seeks support for clinical studies into a mystery disease they have named "Morgellons." Cases have been reported in all 50 states here but also all over Europe, including Britain, many of them by nurses and teachers, according to the Morgellons Foundation. Some doctors have been reported to take it seriously, and one says he has had success treating it with antibiotics. Another physician who specialized in treating Morgellons was in the news a lot lately after he had his license revoked.

But most doctors believe Morgellons is not in the skin, but in the head.

"This is not a mysterious disease," says Dr Norman Levine, a Professor of Dermatology at the University of Arizona. "If you polled 10,000 dermatologists, everyone would agree with me." He says he has seen 100 patients suffering from such symptoms, and they responded well to treatment, including a drug called Pimozide, which is used for chronic schizophrenia. According to Dr Levine, they are suffering from a monosymptomatic disorder in which they are absolutely convinced something is in their skin, a delusional parasitosis. He says he has studied the fibres his patients bring in by the bag-load and they are textile in nature.

Yet the case displayed most prominently by the foundation set up by sufferers is that of a child. Magnified 60 times, this was reportedly extracted from a lesion on the face of a three-year-old boy. Children are not known to suffer from delusional parasitosis. But I suppose organized medicine would say their parents are.

So I talked to Mary Leitao, who set up the foundation after she says her son Drew, now seven, first started complaining about the bugs in his skin at the age of two. She put a plastercast on his arm to make sure the fibres she kept finding really weren't coming from the carpet or some other external source. They weren't, she said. A trained biologist, she works from home full-time now, trying to draw attention to Morgellons, which she said also afflicts her two teenage children. Her story is tragic. Her husband, a physician, passed away unexpectedly from a heart attack in his sleep two years ago.

She came up with the name Morgellons in 2002 after reading a letter penned in 1690 by Sir Thomas Browne, in which the following sentence appears: "Hairs which have most amused me have not beein the Face or the Head, but on the Back, and not in Men but Children, as I long ago observed in that Endemial Distemper of little Children in Languedock, called the Morgellons,wherein they critically break out with harsh Hairs on their Backs, which takes off the Unquiet Symptomes of the Disease, and delivers them from Coughs and Convulsions."

A Dr. C.E. Kellett of Newcastle-upon-Tyne, in 1935, wrote an account of references to this or similar conditions through the ages in 1935.

Mothers of infants who typically suffered from the ailment resorted to honey or heat treatments that forced the "worms" to come to the surface and were then shaved off or pulled out with a tweezer or fingernails, or so Dr Kellett wrote.

Ms Leitao described her son's experience like this. "One day he was taking a bubble bath and scratching and he just looked at me and said wickety whack, I hate this disease," she said. "Last night he had just taken a shower and I dried him off and he said Mom, is it normal for black hairs to come out of your skin when you scratch it? He scratched where his skin was very inflamed and blueish grey fibers rolled out of clean skin. He had just gotten out of the shower," she said.

My next port of call was Dr Randy Wymore, an assistant professor of pharmacology at Oklahoma State University who is studying the disease as a non-delusional phenomenon. The university advertises his research on its website.

At his laboratory, he has been studying skin samples taken from sufferers. He emailed me these images and said he has compared them to microscopic images of many samples of textiles and animal hairs and that they are incomparable.

"At the moment I'm leaning towards the possibility that some kind of neurotoxin may be involved in this," he said. "There's clearly something going on. These people are not imagining this."

But for Dr Levine, people who believe the condition is not delusional are "part of the problem."

Me, I'm baffled, itchy, feeling terrible for these patients, and hoping that if they are indeed suffering from a delusion, that I have not fed it by writing about it. Shouldn't someone just run a proper clinical study, so it can be established once and for all whether these poor people are indeed suffering from a new disease? Or does that make me delusional too?