Morgellons mystery: figment of imagination?

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 s tinging 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 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 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, 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."

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.

But look on the official American Academy of Dermatology Web site, and Morgellons isn't there. The skin afflictions starting with M jump from "Molluscum contagiosum" to "Mucocutaneous candidiasis." 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 and a member of the American Academy of Dermatology, 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 Rodham 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. Sen. Barbara Boxer wrote seven times.

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." Sen. Tom Harkin inserted language in a Labor Health and Human Services bill, later vetoed by President Bush, urging the CDC to continue the Morgellons investigation and "as quickly as possible to plan and begin this important research."

The CDC has contracted with Kaiser-Permanente to begin the study early this year in California. It's hoping to send the fibers collected from patients to the Armed Forces Institute of Pathology in Washington for analysis.

"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."

Robert Bransfield is a New Jersey psychiatrist who studies the connection between infection and mental illness. He is also one of the handful of physicians and researchers who volunteer as unpaid advisers to the Morgellons Research Foundation and who serve on its medical advisory board. "This isn't delusional," Bransfield says. "Delusions are quite variable. So, one person might have a delusion that the FBI is sending out messages to his dentures. Someone else has a delusion that their next-door neighbor is stealing their mail. But the people who have Morgellons all describe it in the same way. It doesn't have the variability you would see in delusions."

And what of mass hysteria? Could Morgellons be, in a very real sense, nothing more than an Internet virus that has taken hold in susceptible minds? "I do see suggestion with the Internet, but it's hard to explain it on that alone," Bransfield says. "You can see the fibers. The fibers can't be mass hysteria. You see people describe this who don't have a computer," he says. "It's puzzling. It's hard to make sense out of it. But it's there."

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 blue jeans, 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.

In 2006, Leitao, who was trained as a biologist and worked as an electron microscopist, along with Ginger Savely, a nurse practitioner; and Raphael Stricker, a hematologist, published a paper in the American Journal of Clinical Dermatology reporting that 79 out of 80 Morgellons patients they studied also were infected with Borrelia burgdorferi, the tick-borne bacteria that cause Lyme disease. Savely and Stricker, who practice medicine in San Francisco, specialize in treating patients with chronic Lyme disease with high-dose antibiotics — a controversial condition and treatment that many mainstream doctors discount. In interviews, Savely and Leitao hypothesized that perhaps Lyme disease or other infections weakened the body's immune system, which allowed Morgellons to take hold. In their paper, they theorized that the fibers appeared to be some type of cellulose. And they noted that Morgellons infections seemed to take off after patients had some kind of contact with soil or animal waste products.

With their new theory that the fibers could be made of some kind of cellulose, Savely and Stricker, both of whom are on the MRF medical advisory board, contacted Vitaly Citovsky, a plant biologist at the State University of New York at Stony Brook. Stricker suspected that agrobacteria, common bacteria found just about everywhere that cause tumorous crown galls to form in trees, were somehow related to Morgellons because agrobacteria like to bind with cellulose. Citovsky studies agrobacteria and its use in genetically modifying plants. It was his lab that showed that agrobacteria can genetically transform any organism, including human cells, by transferring DNA into it.

Citovsky prefaced his interview for this article with, "I'm a normal scientist." He says he was interested in a basic scientific puzzle. "At the time I became involved, I knew nothing of the controversy that surrounds this thing. I didn't know that half the people were crazy. Ninety percent of the stuff on the Internet is absolute lunacy. Government conspiracies, nanotechnology," Citovsky says. "People e-mail me that they have wasps coming out of their skull." Citovsky hypothesizes that Morgellons, like syphilis and other infections, can act on the central nervous system and brain and cause hallucinations.

For his study, funded with $3,400 from MRF, Citovsky tested the skin of five people who believed they had Morgellons and a control group of five people, including himself, who did not. He found agrobacteria in only the Morgellons samples. Then he studied the fibers. Many of them, he says, appear to be polysaccharides, or long sugar molecules, which could be cellulose. And he found they contain traces of metal, such as aluminum. But, like Stricker, Savely and Wymore, he won't be certain what the fibers are until their DNA is tested, an expensive process that the MRF is unable to fund. "To me, it indicates that there is something there. It's not like someone picked up lint from their dryer. But that's all we have," says Citovsky, now a member of the MRF's scientific advisory board.