Figments of the Imagination?
Thousands of people around the world say they have a disease that causes mysterious fibers to sprout painfully through the skin, and they've given it a name. The spread of 'Morgellons disease' could be Internet hysteria, or it could be an emerging illness demanding our attention.
Sue Laws remembers the night it began. It was October 2004, and she'd been working in the basement home office of her Gaithersburg brick rambler where she helps her husband run their tree business. She was sitting at her computer getting the payroll out, when all of a sudden she felt as if she were being attacked by bees. The itching and stinging on her back was so intense that she screamed for her husband, Tom. He bounded downstairs and lifted her shirt, but he couldn't see anything biting her. She insisted something must be. To prove there was nothing there, he stuck strips of thick packing tape to her back and ripped them off. Then they took the magnifying eyepiece that Tom, an arborist, uses to examine leaves for fungus and blight and peered at the tape. "That's when we saw them. It was covered with these little red fibers," Sue recalls. She'd never seen anything like them. And she had no idea where they came from. "You automatically think clothing. But I wasn't wearing anything red."
Over the next month, Sue's itching intensified. Every night, she says, it felt as if thousands of tiny bugs were crawling under her skin, stinging and biting. She became unable to sleep at night. She left the lights on, because the crawling seemed to be worse in the dark. Thinking it might have been a flea infestation, Sue and Tom pulled up all the carpets in the house. Thinking perhaps it was mold, they tore off the wallpaper. They sanded and stained the bare floors, and then Tom called an exterminator.
Every morning, Sue says, she found little black specks all over her side of the bed. Then she discovered droplets of blood where the specks appeared to be coming out of her skin. "I looked like I had paper cuts all over," she says. She began washing the sheets in ammonia every day. Next, her chest, neck, face, back, arms and legs broke out in painful, red gelatinous lesions that never seemed to heal. To get some relief, she stayed in the shower for hours. She bathed in vinegar and sea salt and doused her body with baby powder. Nothing really helped.
Her joints began to ache. She lost all her energy and became forgetful. She says she would comb her hair, and tangled clumps of what looked like hair, fibers, dust and skin tissue would fall out. Then, she says, her actual hair began to fall out and her teeth began to rot. She refused to let anyone in the house and stopped going out. She didn't know what she had, but she was afraid she might be contagious.
One day, she says, a pink worm came out of one of her eyeballs and she coughed up a springtail fly. "That's when I thought, 'I'm really going to kill myself,'" she says.
Sue visited a dermatologist, who said he didn't know what was wrong. In time, Sue, 51, came across a condition on the Internet that sounded exactly like her own, and joined 11,036 others from the United States and around the world who, as of earlier this month, had registered on a Web site as sufferers of what they say is a strange new debilitating illness. Some call it the "fiber disease," but most refer to it as Morgellons, a name taken from a similar condition of children wasting away with "harsh hairs" described in the 17th century. A frustrated mother, Mary Leitao, then living in South Carolina, happened upon the description in an old medical history book in 2002 after doctors didn't believe her when she told them that her son had fibers growing out of his lip.
The catalogue of symptoms for Morgellons includes crawling, biting and stinging sensations, granules, itching, threads or black speck-like materials on or beneath the skin, skin lesions, fatigue, joint pain and the presence of blue, red, green, clear or white fibers. Other symptoms supposedly include what some sufferers politely refer to as "neurological effects," such as mental confusion, short-term memory loss -- and hallucinations such as, possibly, Sue's descriptions of the pink worm and springtail fly.
Pam Winkler, 42, says she was once the perfect suburban wife in Bel Air, Md., with a large colonial-style home, two beautiful children and a picture-perfect marriage to her childhood sweetheart. She became so delusional with Morgellons, she says, that she twice wound up in the psychiatric ward against her will and was put on antipsychotic medication. (Ironically, pimozide, an antipsychotic medication she was prescribed, also works as an antimicrobial and relieves itching.) For two years, she says, she's been unable to work, to sleep at night or to do much of anything. She says neither her husband, from whom she is getting divorced and who has custody of their children, nor her other family members believe her. She says they tell her that she needs help with cocaine addiction and just wants attention. Winkler says she became hooked on cocaine because she was so fatigued with Morgellons that she couldn't wake up. Now, she takes Provigil, a narcolepsy medication, to stay awake.
At her worst, she was locked up in a state mental hospital in North Carolina with what she describes as lesions covering her body and black fibers and specks coming out her nose. Doctors there said her open sores were self-inflicted, caused by her constant scratching. She recalls crying in misery to her husband. "You know me. I'm a shallow person. I'm vain. Do you think I'm doing this to get attention? If I wanted attention, I wouldn't look this skanky. I'd get boobs."
Many Morgellons sufferers report they have lost their jobs, their homes, their spouses and even had their children taken away because of the disease.
Lalani Duval, a 47-year-old cosmetologist who lives in Fort Washington, hasn't let her grandchildren near her for more than a year since her incessant itching started. She refuses to visit her mother for fear she'll give her and the rest of the family whatever she has. Her relatives bring her plates of food after holiday meals. "I've picked up a gun three times and put it to my head thinking I can't take it anymore," she says. "This stuff is coming out of my eyes. I vacuum my bed six times a night. This is a living hell."
Whatever it is -- and most doctors believe it's purely delusional -- Morgellons has become a grass-roots Web phenomenon. Google it, and nearly 162,000 references show up, many of them chock-full of vivid color photographs of what people claim are strange, colorful fibers growing under their skin. Several other sufferers have taken graphic videos of themselves poking with tweezers at what appear to be fiber-entangled lesions and then posted them on YouTube. Long online discussions ramble on about the latest conspiracy theories that cause the disease -- poisonous chemicals produced by the government and spread by jet contrails, so-called chem trails; aliens; artificially intelligent nanotechnology; genetic engineering; or a government bioweapon gone awry. Others debate the latest expensive cure-alls -- antibiotics, antifungal creams, vitamin supplements, liquid silver, food-grade diatomaceous earth, deworming medication meant for cattle.