By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
Tim Jones sees this as one of the biggest weaknesses of modern medicine.
"I think that particularly with diseases like this, where we don't know the clear cause, you can't just open up the page in the book and in 30 seconds of reading it tells you how to diagnose it and what to do. I mean those kinds of diseases are conducive to the seven-minute office visit, which our medical system is really pressuring," Jones says.
"Clinicians don't get paid proportionately for spending an hour with a patient; they don't get paid six times more than if they spend 10 minutes with them, so you have these competing pressures that clearly are going to contribute to frustration on the part of patients who are really hurting."
And that's what's happened with Morgellons. Because they have been ignored and stigmatized, the Morgies have formed their own online community, where wild theories rage, some of which may only heighten the paranoia and delusions many Morgies already feel.
"These are people digging into their own mysterious illness, and they have no business doing research with microscopes, they really don't," says Leitao, the MRF executive director. "There's no justice to the fact that they are researching their own illness as their lives completely fall apart, completely disintegrate."
In the weeks before his death, she tried everything she could to help her son. She would have flown him to another country to find a doctor if it would have helped. In the final year of his life she spent more than $16,000 on antibiotics.
At his funeral, she described Travis as a very shy young man who loved computers, electronics and the guitar. He was buried in Shelton, Washington, where he'd grown up, with a sword he and his father had bought at Excalibur Casino in Las Vegas. It was a symbol of the way he had fought Morgellons like a warrior, his mother said.
"I don't want Travis' death to be in vain," she said at his funeral. "If we can help other Morgellons sufferers to survive, this would make Travis very happy."
Not longer after, Travis Wilson's death was mentioned on Morgellons message boards and other Web sites. His story was featured on news programs in Portland and San Antonio. He became a symbol for Morgellons patients everywhere, the public face of a mysterious disease.
In the end, no one knows for sure what killed Travis Wilson. Although his mother says he no longer abused heroin, his online journal made frequent references to drugs and suicide, even in the last entry he left. Presenting him as the first Morgellons casualty, as some media have done, is misleading; too many other factors cloud the circumstances of his death.
But Lisa Wilson doesn't see it that way. It was Morgellons--a disease with no known cause or cure--that drove him into madness, desperation and loneliness. Even if his drug overdose was not accidental, he was only looking for relief from the pain caused by Morgellons, she says.
The greatest tragedy, she says, would be to ignore the disease or to dismiss it as imaginary. Because somewhere, there is someone else suffering just as her son did.