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Washington Post photos
Ahmed Kilani is researching Morgellons disease at Clongen Laboratories in Germantown, Md. More than 40 members from both political parties have leaned on the CDC to look into the disease.

Medical mystery

Morgellons dismissed as mental; sufferers claim itching, fatigue

Symptoms for Morgellons include threads or speck-like materials on or beneath the skin.
Laws

WASHINGTON – Sue Laws remembers the night it began.

It was October 2004, and she’d been working in the home office of her Gaithersburg, Md., brick rambler where she helps her husband run their tree business. She was sitting at her computer 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. 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.

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. 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.

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 last 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 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 and was put on antipsychotic medication. For two years, she says, she has 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 wants attention. Winkler says she became hooked on cocaine because she was so fatigued with Morgellons that she couldn’t wake up.

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.”

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 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.

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.

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.

Despite the skepticism in mainstream medical circles, the federal government is now taking Morgellons seriously because of pressure from sufferers and the Morgellons Research Foundation, the non-profit organization that Mary Leitao founded in 2002. 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.

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.”

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. “ ... 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.

Sue 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 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. 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.”

After 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.”

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.

Phuong Trinh, an infectious disease specialist in Silver Spring, Md., took the samples Sue brought him in little jars. “They looked like dust balls,” he says, “things you would see in the rug or the stuff you’d get from your vacuum cleaner.” He checked her for every known parasite but found nothing. He, too, told her she was delusional.

“I was labeled crazy,” Sue says. “But I was desperate, and no one was listening to me. I was acting delusional when I saw some of these doctors. I was going out of my mind.”

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 whether 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.”

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, 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.

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 money 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.

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