'Morgellons' Mystery
Aug. 9, 2006 — -- Brandi Koch of Clearwater Beach, Fla., says she feels as if she's living in a horror movie. She claims she has colored fibers coming out of her skin.
Brandi is married to Billy Koch, a former Major League baseball player who was one of a handful of pitchers who could throw a ball at more than 100 mph. Koch says her life was good, until one day in the shower she noticed something strange -- tiny fibers running through her skin.
"The fibers look like hair, and they're different colors," Koch says.
Koch says she knows that what she's experiencing "sounds crazy," but it's true. "If I had a family member call me up and say, 'I have this stuff,' I'd say, 'I'm sending a straitjacket over. You need some help.'"
Anne Dill describes a similar condition. Looking at Dill's life, it appears as if she's living an idyllic existence in a home on Florida's Lake Mary. Her three daughters excel in sports and are straight-A students.
But life in the Dill household is far from idyllic. Anne's 40-year-old husband, Tom, died in January and she believes his death was due to a contagious illness that has infected her entire family.
Dill describes her family's skin: "There's this fibrous material. It's in layers." Dill says the skin on their hands is particularly bad, very swollen and itchy. She says it feels as if bugs are crawling underneath the skin.
Consulting Doctors
Dr. Greg Smith of Gainesville, Ga., has been a pediatrician for the past 28 years. He claims a fiber is coming out of his big toe, and he has video footage to prove it.
"It felt like somebody stuck a pin in my toe and wiggled it and it just continued to hurt," Smith says.
He says he never thought he had bugs. "I've certainly had those crawling sensations, and the fibers which come out of the skin are really bizarre, and really odd."
When Koch, Dill and Smith consulted doctors, they received diagnoses that they call wrong or dismissive. Dill's doctor told her to stop scratching, even though many of her sores were in places she could not reach.
Koch went to the Mayo Clinic, where doctors didn't believe that the fibers she'd brought them had grown from her body. "I saw the infectious disease doctor, and I showed him some samples that I had and he snickered. I can't go through another doctor blowing me off or looking at me like I'm crazy. I know I'm not," says Koch.
Smith -- a doctor himself -- was handed over to a hospital psychiatrist when he went to the emergency room complaining of a fiber in his eye. He admits that he, too, would be skeptical if a patient came to him with the same story.
"I would wonder if they'd taken their medicine that day. It makes no sense. It's totally bizarre. It's something that -- just telling the story is so outlandish on the face of it -- that no one would believe it," Smith says.
Dr. Vincent DeLeo, chief of dermatology at New York's St. Lukes-Roosevelt Medical Center, weighed in on what he'd say to someone who came to him with this condition. "I don't think this is any different than many patients I've seen who have excoriations and believe that there is something in their skin causing this."
DeLeo says the open lesions are a result of scratching the skin.
But for biologist Mary Leitao of Surfside Beach, S.C., medical skepticism was something she refused to accept.
Relying on Your Own Research
Her son, Drew, was just 2 years old when Leitao noticed an odd sore on his lip that would not heal.
"He very simply said 'bugs,' and he pointed to his lips," says Leitao.
Leitao never expected to find herself at the center of a medical storm. But when her son complained about that strange sore, the biologist, who once ran the electron microscope at Massachusetts General Hospital in Boston, did what any scientist would do. She took a closer look.
"What I saw were bundles of fibers, balls of fibers," Leitao says. "There was red and blue."Even stranger, they glowed under ultraviolet light.
Armed with research, Leitao took her son to a doctor at one of the country's leading hospitals. He dismissed her tale of fibers and wrote to her pediatrician, saying that her son needed Vaseline for his lips and that his mother needed a thorough psychiatric evaluation.
Undaunted, Leitao began poring through the medical literature looking for clues. What she discovered was a 17th-century reference to a strange disease with "harsh hairs" called "Morgellons."
She named the strange fibers Morgellons disease and put the information on a Web site, Morgellons.org. Since then, more than 4,500 people have contacted Leitao, claiming they have Morgellons-type symptoms. The name has stuck, and the disease was featured on the television show "ER."
But do these fibers grow from inside the body -- as Morgellons patients believe -- or do they come from the external environment -- a kind of lint -- as the medical skeptics say?
Searching for an Answer
Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue says.
He thinks the skeptics are wrong. "This isn't lint. This is not a commercial fiber. It's not."
The lab's director, Mark Boese, says the fibers are "consistent with something that the body may be producing." He adds, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
While they wait for evidence that they hope will convince the medical community to take them seriously, some Morgellons sufferers wear pink bracelets that say, simply, "Fortitude."
Dill says she looks at pictures of her family from just four years ago and finds them unrecognizable. "My kids have to see not only their dad but their mom disintegrating, and that's gotta be really scary."