Morgellons: All in the head?

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http://www.timesonline.co.uk/article/0,,18393-2188371,00.html

 

 

Times Online May 19, 2006

 

 

 

 

All in the head?

By Elaine Monaghan, Times Online special correspondent

 

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?