Mystery disease horror story
Thursday, May 18, 2006
By LAURAL PORTER, KGW Staff www.kgw.com
What sounds like science fiction was real life for Portland's Dr. Beverly Drottar.
Her story is enough to make your skin crawl. Her horror story is repeated across the country and is grabbing the attention of at least one senator and The Centers for Disease Control.
The disabled family practice doctor felt like bugs were crawling under her skin.
"If I fully tell people what has gone on with me medically, they think they're in the twilight zone," said Drottar.
She woke up with the feeling that fluid was flowing just below her skin. Often black or blue hair like fibers protruded from her skin, she said.
"I thought I had been exposed to asbestos. I thought I was having asbestos fibers come out of my skin. I was pulling long, thin, small hair-like fibers that were extremely sharp that could literally pierce through my finger nails," Drottar said.
In addition to the feeling of bugs and the fibers, Drottar also suffered from severe depression, chronic fatigue and a weakened immune system. As a result, she had to give up her family practice, Drottar said.
The worst part, she said, was that doctors didn't believe her symptoms were real.
"I was practically bedridden and my physicians thought it was depression and treated me with psychotropic drugs. I was absolutely terrified that I was going to be admitted to an insane asylum," she said.
Drottar saw countless doctors and dermatologists who diagnosed her with delusional parasitosis, but she's convinced what she had is real. She said she was diagnosed with Lyme disease and believes her symptoms are the result of Lyme and another illness she learned about on the internet -- Morgellons disease.
Patients all over the country are reporting symptoms similar to those Drottar described, according to the Morgellons Research Foundation Web site. The organization is privately funded and was founded by Mary Leitao, a biologist, whose young son has the same symptoms. The organization reports more than 1,300 cases of people with Morgellons disease nationwide.
Twenty-three-year-old Travis Wilson, of Shelton, Wash. also thought he had Morgellons disease. His mother, Lisa Wilson, said he suffered from the feeling of parasites living in his body for years.
"He would take Epsom salt baths. He bought every type of cream and anti-parasitic product. We spent thousands on products he'd order from all over the world," Wilson said.
Nothing worked. Like Beverly Drottar, Travis saw numerous doctors. His suffering was excruciating, according to his mother.
"He would stomp up and down to try to get rid of these. He would take shower after shower," she said.
Lisa Wilson took her son to the emergency room in Shelton. She said she saw the fibers coming out of his skin.
"They were so large, I could see them with my own eyes, white and black fibers coming out of his fingers. I told the doctor, 'come look at these fibers. You can see the Morgellons,' " Wilson said. "The doctors totally ignored us."
She said her son was also diagnosed with Delusional Parasitosis.
Travis found what he thought was his only escape from the pests that plagued him. In April, Travis Wilson killed himself.
"There was no way to ease his suffering. People didn't believe him. He had no hope," his mother said.
At least one physician does believe the disease is real.
"I feel terrible for them, because they are not crazy. They're sick and we need to figure out what's going on," said Dr. Randy Wymore, a microbiologist at Oklahoma State University in Tulsa, Okla. He is also the volunteer research director for the Morgellons organization.
Wymore said he's seen the fibers.
"It's very easy to see theses fibers," he said. "Back in February, we had a number of patients who came in. Every one of those patients, it was very easy to visualize the fibers microscopically," said Wymore.
According to Wymore, the fibers are visible with a low-level microscope available at hardware stores.
"The problem is doctors don't look," Wymore said -- the first thing that comes to mind for most physicians is that the person is delusional.
Dr. James Hancy heads the Obsessive Compulsive Disorder Clinic at Portland's Oregon Health & Science University. He said he's seen patients with similar symptoms and believes they suffer from a compulsive disorder much like people who repeatedly wash their hands to get rid of germs.
"The phenomenon here is very similar, except that we are dealing with bigger critters," said Hancy. "Rather than bacteria, there is this excessive concern, almost to a delusional standpoint of bugs or parasites."
He conceded there could be something else going on with some of the patients who believe they have Morgellons disease. However, Morgellons is only a working name given to the illness by the Morgellons organization and is not an accepted term by the medical community.
Hancy said doctors would be more willing to consider a different diagnosis if there were peer-reviewed studies and published papers on research into the fibers.
That's something Wymore said he's working on. His department is going through an institutional review process so that human subjects can participate in research. He also said his office is working with the Washington county in which Travis Wilson committed suicide, to obtain samples taken during an autopsy.
Wymore hopes his work for the Morgellons organization will help prevent future suicides by people suffering from the feeling they're under attack by bugs.
"I am very sad this happened. I hope we can try to make it so this never happens again," he said.
Wymore said the medical community should take another look at the illness.
"Don't simply assume a person is making something up, even if by chance they are a bit anxious, or their behavior is a bit odd," he said. "They deserve to be treated like humans with dignity and respect and get a microscope and actually look at their skin."
Travis Wilson's mother hopes by going public with her son's story she can help encourage more research.
"If you don't call it Morgellons, call it something. There is something there. People are killing themselves. I don't want Travis' death to be in vain. I want something good to come of this, if it just saves one person's life," she said.
Meanwhile Drottar is battling her illness by trying to lead as normal a life as possible. Unable to work, her volunteer work as a Girl Scout leader gives her reason to get up in the morning, she said.
"The little girls love me no matter what. They're a joy," said Drottar.
She believes the cases of Morgellons being reported across the country are just the tip of the iceberg.
"We are like ostriches sticking our heads in the sand. The medical community is not prepared to deal with this issue yet," Drottar said.
Wymore agrees with Drottar.
"There is a lot of mystery involved with this and we really need to get to the bottom of this," he said. Wymore is concerned Morgellons disease could possibly be contagious. He said there are cases in the country of multiple family members with what he calls Morgellons symptoms.
"It does suggest it could be contagious," he said, "but again, we don't have any hard science to answer that question as anything other than a guess, and my guess is no better than anyone else's."
The medical mystery has grabbed the attention of California Senator Dianne Feinstein. According to the Morgellons Web site, California is one of the states reporting the most cases of Morgellons.
In a letter to the Centers For Disease Control, Feinstein wrote, "I have received numerous letters and phone calls from constituents regarding Morgellons disease." Feinstein asked the CDC what actions the agency is taking to work with state and local agencies regarding Morgellons.
Three weeks after Feinstein's letter, the CDC replied to a citizen also inquiring about Morgellons.
CDC Director Julie Louis Gerberding said the center is currently looking into an appropriate course of action to address the nationwide concern about Morgellons.
The move is too late for Washington's Travis Wilson, but Drottar hopes one day more is known about Morgellons.
"I would like it if my primary doctor didn't raise her eyebrows when I tell her I have Morgellons disease," she said.
Drottar's hope is echoed by hundreds of other Americans who say they have Morgellons and just want a way to rid themselves of the pests that plague them.
© 2006, KGW-TV
Posted with permission from www.canlyme.com. This site has a wide range of interesting medical information.