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BY KERI BRENNER | THE OLYMPIAN • Published July 21, 2008
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Two years ago, Inez Williamson became part of a mysterious, frightening science fiction-like nightmare being played out on her body.
Without warning, itching and stinging sores erupted on her eyelids and scalp. Red welts appeared on her arms.
Each of the sores or lesions displayed a common horror: tiny multi-colored or white fibers were growing out of each one, like deformed tendrils or discolored dental floss. As the fibers came out, they burned as if tiny insects were biting savagely.
"It reminds me what it would be like if you rolled around in fiberglass," said Williamson, 47, an Olympia resident who moved here from New York City. "Around the time of my (menstrual) period, it's unbearable. I lose a lot of sleep."
Williamson is one of an estimated 10,000 people nationally with Morgellons disease, a baffling and debilitating condition now being studied by the U.S. Centers for Disease Control and Prevention in partnership with Kaiser Permanente Northern California.
According to the Pennsylvania-based nonprofit Morgellons Research Foundation, Washington state has more than 200 individuals or families registered as having at least one family member with the disease. The highest concentration of Morgellons cases are in California, Texas and Florida, the foundation says.
In addition to the red sores and stinging fibers of unknown origin and composition, other sufferers report black speck-like material on or beneath the skin. Some people also have systemic reactions, such as fatigue, mental confusion, short-term memory loss and joint pain.
"It really affects my energy," Williamson said.
Williamson says she is at a loss as to where to go for help. A former social worker now on Medicare disability for a back injury, Williamson said she went to an urgent care walk-in clinic in Thurston County. Staff there gave her anti-fungal drugs and told her to go home.
"They really wanted to get me out of there," she said. "At first they didn't believe me, and they didn't want to touch me."
At a low-income clinic, Williamson said staff gave her other drugs that didn't help. Ditto for a hospital emergency room.
She said she has tried some remedies, such as a colloidal silver product, with little success.
"What's scary is that they don't know how contagious it is," Williamson said. "I have a partner, and we talk about it a lot, but I'm more concerned for him than he is for himself."
Until recently, when the CDC's new focus gave the disease more credibility, most doctors didn't believe it was real. Some accused Morgellons patients of picking at their own skin to cause the problem, or making it up and making it worse through psychological problems.
No one knows what causes it, or even what exactly the fibers are made of.
Some researchers, such as Dr. Hildegarde Staninger of Integrative Health Systems in Los Angeles, say the fibers seem to be caused by a nano-sized foreign invader composed of a virus-like organism swimming in a sea of manmade materials such as silicone or polyurethane.
"It is silent, smart, glistening, powered by its own battery," Staninger said in a 2007 report presented at the National Registry of Environmental Professionals conference in Texas. "And when it strikes its victim, it feels like a piece of burning broken glass as it pierces the skin."
Staninger suspects environmental pollutants or allergens could be at work.
Williamson, who has registered with the Morgellons Research Foundation, said she believes heavy mold exposure when she lived in New York might have played a part. According to the Morgellons Research Foundation, the disease does run in families, so it is possible that it is contagious.
Anne Norskog, a member of The Olympian's reader network, said the number of mysterious diseases of all kinds appears to be growing as environmental toxins multiply.
"There are a whole lot of things out in this world that remain unexplained by the 'experts,' " said Norskog, a former medical transcriptionist who has multiple sclerosis. She cited a host of environmental allergens as potential causes, includign "detergents, shaving creams, dryer sheets, air fresheners, fireplace smoke, tobacco smoke, car exhaust, mold, shampoos, creme rinse conditioners" and other manmade products. In addition, animals and insects, inks, dust mites and paper fibers are suspect, she said.
"Our skins are under assault 24/7," Norskog said.
Williamson, meanwhile, said she hides the sores on her scalp with her long hair, and wears long-sleeved shirts to cover her arms. Since she does not have large red welts on her face like some other sufferers, she is able to be in public without enduring stares or revulsion from others.
Williamson said she feels discouraged that there is no help available in South Sound, but is buoyed somewhat by the serious research in California. A recent "Dr. Phil" episode featured the disease, and other media reports are increasing as medical experts start to take it seriously.
In addition, numerous Web sites have been set up to offer chat rooms, advice on treatments, and support.
"I'm hopeful that in a couple of years they'll have a better idea," Williamson said. "Now, I don't feel there is anyone willing to treat me who is accessible." resources on the web
Morgellons Research Foundation:
www.morgellons.orgMorgellons Sanctum:
www.morgellons-sanctum.orgDr. Hildegarde Staninger, industrial toxicologist, Integrative Health Systems in Los Angeles,
www.staningerreport.comAdvertisement
Related Stories & Links
* From the column 'Your Alternatives' by Keri Brenner (weblink)
* Dr. Hildegarde Staninger, industrial toxicologist, Integrative Health Systems in Los Angeles (weblink)
* Morgellons Sanctum (weblink)
* Morgellons Research Foundation (weblink)