Sue Laws remembers the night it began. It was October 2004, and she'd been working in the basement home office of her Gaithersburg, Md., 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.

Morgellons
©Lab of Vitaly Citovsky/SUNY at Stony Brook
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


"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.

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 11,000 others from the United States and around the world who, as of earlier this year, 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 catalog 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.

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, Md., 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."

Online community

Whatever it is - and most doctors believe it's purely delusional - Morgellons has become a grass-roots Web phenomenon. Google it, and more than 160,000 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.

But look on the official American Academy of Dermatology Web site, and Morgellons isn't there. Ditto on the Infectious Diseases Society of America. A search for Morgellons on the National Institutes of Health site returns "no pages found." There is only one study of Morgellons in a peer-reviewed medical journal, the holy grail for Western medicine.

Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio, gives presentations to the medical community debunking Morgellons. It's not that people aren't suffering; they are, he says. It's just that he thinks they have something else, such as scabies or an eczema-like skin condition called prurigo nodularis that's little understood and for which there is no good treatment. And the fibers, he says, are easy to explain.

"People with very itchy skin have scabs, which ooze and tend to pick up threads from the environment, from dogs, cats, air filters, car upholstery, carpet," he says. "Any fibers that I have ever been presented with by one of my patients have always been textile fibers."

Despite the extreme skepticism in mainstream medical circles, the federal government is now taking Morgellons seriously because of pressure from sufferers and the Morgellons Research Foundation, the nonprofit organization that Mary Leitao founded in 2002 and now runs out of her house in Pennsylvania. The group is funded through contributions - $29,649 in 2006, according to its Web site. And it uses much of the money to promote public awareness and provide small research grants.

In recent years, self-described sufferers clicked on the foundation Web site and sent thousands of form letters to members of Congress. More than 40 members from both parties, including presidential candidates Sens. Hillary Clinton, Barack Obama and John McCain, leaned on the Centers for Disease Control and Prevention, the nation's public health watchdog, to look into the disease.

As a result, the CDC has budgeted nearly $1 million in the next two years for Morgellons research and is undertaking the first major epidemiological study of what it is calling an "unexplained dermopathy."

"No one is denying or trying to downplay that these people have something going on. It's just what is the something?" says Mark Eberhard, division director for parasitic disease at the CDC and part of a 12-member task force investigating Morgellons. He says he began to hear of similar cases when he was in graduate school 35 years ago. "This is a topic that people in the medical community have not wanted to engage on because it's very complex," he says. "There's not a clear direction forward . . . This is why we need to be very open. I'm a parasitologist, but maybe there's a virus or bacteria. We need to start with a very broad approach."

The task force will include psychiatrists. "Some of this may even be a mental condition," Eberhard says. "That's why we've been suggesting that there has to be not only a physical but mental evaluation as well as part of any study."

Searching for answers

Sue Laws had been going to see Praveen Gupta, a family practice physician in Rockville, Md., for regular physicals for 14 years. He would get after her for drinking too much coffee, sometimes as many as 30 cups a day, he noted in his records. (Sue says she has never had more than five cups a day.) And he tried to get her to cut back on her three-pack-a-day smoking habit. He knew her husband and four children and thought they were all rather nice. And he knew she'd had her share of tragedies, including a son who'd been diagnosed with a malignant brain tumor. But nothing prepared him for her call in late November 2004.

He jotted notes in her medical chart: "She says she's coughing up bugs and worms." She complained of lesions all over her neck, chest, arms and legs that wouldn't heal and itching that would not end and worsened at night. She couldn't sleep. She couldn't think straight. And she said she saw fibers - strange red, blue and black fibers - coming out of her skin. Alarmed, he made an appointment for her to come see him that December. But when Sue came in, Gupta says, he found nothing.

"Just a generalized rash, which she could have scratched herself. Nothing out of the ordinary," Gupta says. "It was very bizarre. She brought a sample in. It didn't look like worms, that's for sure. It didn't look like any parasites, that's for sure. It looked like it could have been from the carpet. It could have been dog or cat hair, for all I know."

He sent Sue to an infectious disease specialist at Washington Hospital Center in Washington, D.C. 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, D.C., 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."

Scientific testing

Randy Wymore, a molecular biologist who studies gene expression in cancer and heart disease at Oklahoma State University, was probably the first scientist to look at what doctors and dermatologists typically discard as bits of fluff and dust. In the spring of 2005, a student in his second year of cardiac pharmacology class asked Wymore a question about muscle fibers. On a Friday, searching the Web for answers, he hit upon some fiber disease and Morgellons sites. "It sounded totally crazy," he says. But, over the weekend, he kept thinking about the fibers. On Monday, he figured it should be easy enough to determine if the fibers really are from textiles, as doctors say, or from the body, as sufferers contend. So he e-mailed some of the people who'd posted photos of their fibers asking for samples to analyze.

He was expecting to get bags filled with dirt, ants, flies or cotton threads. Instead, within 48 hours, he started getting packages from Texas, Washington, Florida, California, Pennsylvania and other states. What he saw was surprising. "Even though they were coming from very different places, they all looked very similar to one another," Wymore says. "The texture and shades - a cobalt blue, red fibers that are almost a magenta color - are very, very similar." And they all autofluoresced, or glowed, in certain light. He picked threads out of bluejeans, fuzz from the carpet, even pepper flakes and compared them to the fibers. He became convinced that the fibers were something entirely different.

With a colleague, Rhonda Casey, a pediatrician, and a $4,000 grant from the Morgellons Research Foundation, Wymore got fresh fiber samples from 20 Morgellons patients. He brought them to fiber analysts at the Tulsa Police Department's forensic lab. The red and blue fibers did not match any of some 900 commercially available textiles in its database. They were not modified rayon, nylon, cotton or anything previously catalogued. Then forensic scientists tried to burn one of the fibers, heating it to 700 degrees Fahrenheit, to determine if it matched any of 85,000 known organic compounds. Again, nothing matched. And the heat, which typically vaporizes any organic material, did nothing to the blue fiber. "We were able to reach in with a tweezers and pick it up," Wymore says. So, he is pretty clear about what the fibers aren't. "But I don't have the foggiest idea what they are."

Wymore has since had a falling out with Leitao and other MRF board members over management and funding issues and has started his own foundation at Oklahoma State to raise funds and search for a cure.

Truth is elusive

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. 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.

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.

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.

Michael Bostwick, an associate professor of psychiatry at Mayo, says he told a gathering of dermatologists not long ago that they should stop running from Morgellons patients. "I got hissed out of the room," he says. "I think the best thing to say is that people are having an experience, and it's not explained. And people look for explanations. Separating the narrative truth, the stories people tell to explain what's going on, from the biological truth seems to be the challenge of this condition . . ."