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," she said. "I can't go through another doctor blowing me off or looking at me like I'm crazy. I know I'm not."
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," he told ABC News in 2006.
DeLeo said the open lesions were most likely a result of scratching the skin.
But biologist Mary Leitao refused to accept the medical skepticism surrounding Morgellons.
Leitao's 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," said Leitao.
Leitao never expected to find herself at the center of a medical storm. But when her son complained about the 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 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. At the time of her interview in 2006, more than 4,500 people had contacted Leitao, claiming they had Morgellons-type symptoms. The name 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?
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 said in 2006.
He thought the skeptics were wrong. "This isn't lint. This is not a commercial fiber. It's not."
The lab's director, Mark Boese, said the fibers are "consistent with something that the body may be producing." He added that, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
Dill said she looks at pictures of her family and finds them unrecognizable. "My kids have to see not only their dad but their mom disintegrating, and that's gotta be really scary."
While they wait for evidence that they hope will convince the medical community to take them seriously, some Morgellon's sufferers wear pink bracelets that say, simply, "Fortitude."