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Posted on Fri, Mar. 18, 2005
Mysterious skin disease has some doctors doubting, others stumped
BY SANDY KLEFFMAN
WALNUT CREEK, Calif. - (KRT) - At first, they looked like tick bites. Then they grew itchy and painful and became open, weeping wounds.
The lesions spread across much of Tina Solovieff's body - her back, arms, legs and feet.
What happened next stunned and horrified her.
The 51-year-old El Cerrito, Calif., resident noticed strange, stringlike fibers emerging from the lesions - unlike anything she had seen, despite working for years as an intensive care nurse.
Hundreds of people in California, Florida, Texas and elsewhere tell similar stories of a mysterious skin condition they have dubbed Morgellons in honor of the first suspected case, described 400 years ago.
Is a new, unknown disease striking these regions? Or is it simply "delusional parasitosis," a condition in which people falsely believe they are infested by parasites?
Medical experts are divided. Most remain skeptical, if they have heard of Morgellons at all.
But Dr. Raphael Stricker, a San Francisco Lyme disease specialist, believes the condition is real.
"It's a very bizarre kind of symptom, and I think it's been trivialized in the past," Stricker said.
"But people are starting to pay more attention because there are more and more patients who seem to have it."
Today, more than 1,500 sufferers have registered with the Morgellons Research Foundation, including 400 from California. Hot spots in addition to the San Francisco Bay area include Los Angeles, Houston, Dallas and Austin, Texas, and the state of Florida. Registrants come from every state and 13 countries.
"There's a large proportion who are either nurses or teachers," noted Stricker. That only compounds the mystery.
Dr. Julie Gerberding, director of the national Centers for Disease Control and Prevention, wrote to a Florida senator last year that such unknown skin conditions have been "matters of concern" to the CDC for some time.
The agency examined 50 photos of lesions or objects and identified no parasites.
"We encourage the submission of specimens stored under proper conditions to either state or CDC laboratories for testing," Gerberding wrote.
To date, the CDC has received no such specimens from clinicians.
But Stricker noted the agency has not widely publicized how or to whom to send specimens.
"The CDC has no program to test Morgellons," he said. "They're being a little disingenuous."
Morgellons sufferers say they have difficulty finding any medical expert who will take them seriously.
San Ramon, Calif., resident Lien Kingsford, a 39-year-old document control coordinator, first noticed swelling and lesions on her foot after returning two years ago from a camping trip in Calistoga where she wore sandals.
Soon she had a crawling sensation under her skin. The lesions then spread to her face, neck, ears, arms and stomach. Doctors dismissed her.
"They would look at it with the naked eye and say stop scratching it," she said.
Hoping to rid her body of the mystery, Kingsford entered what she calls her compulsive phase.
"I got into this madness of cleaning, cleaning, cleaning," she said. Surviving on only a few hours of sleep each night, she vacuumed every room and used "every product known to mankind for sterilizing."
Solovieff, who became ill three years ago, has gone from doctor to doctor and been told repeatedly she is delusional. "You've got to stop picking at your skin," they said.
One reason the delusional parasitosis diagnosis comes so quickly is that Morgellons patients often meet the classic definition of the syndrome.
In medical school, doctors learn to watch for the "matchbox sign," when people bring in small boxes of dust, lint, scabs or hair to "prove" their parasite infestations.
Morgellons sufferers often bring in their fibers.
Dr. Dan Eisen, a UC Davis dermatologist who had not heard of Morgellons, said people frequently present things for him to examine.
"We'll look at it under the microscope, and we never find anything," he said. "Really, the patients function normally except for the fact that they have this one delusion."
Skeptics say the Morgellons fibers are most likely from materials that come in contact with the lesions.
But Stricker, who is treating six people with the condition, disagrees.
"It's really more than that because you can see them coming through the skin," he said.
Jenny Haverty, a clinical microbiologist at Marin General Hospital, also believes the condition is real. Her adult daughter began noticing the fibers emerging from various parts of her body in 2003, but she has never had lesions.
"It's just disgusting," Haverty said. "It's all over her shower and her bedding. It's pretty frightening.
"I've showed it to my co-workers, and they're all horrified," she added. "They're horrified that the medical community isn't open to this."
Haverty used a microscope to examine fibers from four people, each living in a different San Francisco area county. She discovered black, red, brown and clear fibers. Each person also had fibers that turned aqua blue under a fluorescent microscope. Many of the fibers had similar sizes and shapes.
There are several theories about possible causes. Sufferers often report biting and crawling sensations, but no one to date has discovered a parasite. Haverty placed a specimen in a culture solution, but no known fungus emerged.
Some speculate there might be an association with Lyme disease. Morgellons patients often test positive for Borrelia burgdorferi, the bacteria that causes Lyme.
Stricker has noticed that antibiotics used to treat Lyme often help with Morgellons, but he doesn't know why.
Adding to the mystery, not every Morgellons patient tests positive for Lyme disease.
After conferring with the CDC, California health officials have decided to let others take the lead on investigating Morgellons at this time.
"Patients with such skin conditions would best benefit from a thorough clinical and laboratory evaluation by medical specialists, preferably at a university medical center," said state health department spokeswoman Lea Brooks.
Most people suffered in isolation until Mary Leitao formed the Morgellons Research Foundation several years ago.
Leitao, a biologist, grew concerned when her then-2-year-old son, Drew, developed the condition. Rushing to the Internet, she found others who had dealt with the lesions for years.
"They pretty much told me it has ruined their lives," she said.
Solovieff quit her job as an intensive care nurse in 1984. Seventeen years later, she noticed what appeared to be several small tick bites. She lived in a Berkeley, Calif., hills home at the time surrounded by a wooded area.
The bumps got bigger and deeper and spread throughout her body.
"I would go to bed and I would be itching so badly that it would literally keep me up at night," Solovieff said.
She began keeping voluminous records of the weird, multicolored fibers she plucked from her lesions. She taped them to bits of paper with the date and location where she found them.
That only increased the skepticism of doctors.
The disease began to consume Solovieff's life. She lost a relationship and was asked to leave a public pool until her sores healed.
"There's a real shame factor to this," she said.
Like many others, Solovieff has found the lesions come and go. This month, she has just one lesion on the back of her leg, but her body bears the scars of previous outbreaks.
For some, it all gets to be too much. Redwood City, Calif., resident Kathleena Ames, 52, recently spent several days in the psychiatric unit at Stanford Medical Center after her boyfriend rushed her there, telling them she was suicidal.
"I couldn't take it anymore," she said in a phone interview. She has had symptoms since 2000.
Kingsford found her way to cope after her brother almost died last November.
Sitting with her family in the hospital, she realized many people have bigger problems. She found comfort in a renewed religious faith and now hopes to help others who suffer from Morgellons.
"I'm hanging around waiting for some miracle drug to come out. If this is the way I have to spend the rest of my life, I'm OK with it. I still have lesions, but I refuse to let it consume my life."
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