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New skin disorder drawing attention

BY DELTHIA RICKS | delthia.ricks@newsday.com

9:53 PM EST, January 28, 2008

A woman who claims to be suffering from a rare infection called Morgellons uses a pen to point to items on a cotton swab that she believes are the bugs connected to the condition, at her Roseville, Calif., home, in this 2006 file photo. The U.S. Centers for Disease Control and Prevention is paying California-based health care giant Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons' bizarre symptoms. (AP Photo)

When federal health officials announced earlier this month they would begin looking into a relatively new, unexplained illness, biochemist Vitaly Citovsky of Stony Brook University had been studying the unusual condition for a year.

The disorder, called Morgellons by some of its sufferers, and fiber disease by others, is characterized by a disparate range of symptoms. The most striking: non-healing skin eruptions.

Patients have reported stringy, fibrous material emerging from these lesions, which sets Morgellons apart from virtually everything doctors have ever learned about dermatology.

"It's not recognized officially as a medical condition," Citovsky said Monday. "Our dermatology department does not recognize it. Many people who are affected have bizarre, inconceivable symptoms."

Morgellons is a medical mystery with more questions than answers.

Citovsky said doctors still have no idea whether to categorize it as a disease that has a specific cause; a syndrome with several components, or an emotional problem driven by a vocal community that seeks solace in cyberspace.

In addition to the fibers, patients also report abnormal skin sensations, such as stinging, crawling and biting. Still others cite joint pain and short-term memory loss as key problems. A few report shocking manifestations, such as a live worm emerging from their skin, or a wad of the fibrous material bursting through a lip.

"Many [pyhsicians] consider it a psychiatric problem," Citovsky said. "However, there might be something that they develop," he added, underscoring that his laboratory analyses have cracked the chemical puzzle of the fibers.

"They're made up of polysaccharides, sugars," he said. "Long chains of sugar molecules. The problem is the people who deny the existence of the disease. They say this is lint or dirt that people find on their skin. But it's not dirt, it's not lint, it's not twigs.

"But on the other hand, it is not a living creature, because some people say they're worms."

Citovsky received samples of the fibrous material last year from San Francisco physician Raphael Stricker. Stricker wrote the first paper on the disorder, along with biologist Mary Leitao, who gave the disorder the name Morgellons in 2002. She found a reference in a medical history book on a 17th century disease in which fibrous material emerged from people's skin. Her son had suffered from emerging fibers. She now runs a Morgellons foundation in Pennsylvania.

Stricker sent samples of the material to Citovsky's lab because he thought the Stony Brook biochemist could produce answers.

Earlier this month the Centers for Disease Control and Prevention got involved in Morgellons research.

"Over the past year or so, the CDC has received an increased number of inquiries, regarding an unexplained condition which some refer to as Morgellons," said Dr. Michelle Pearson, announcing a collaborative investigation into the disorder with Kaiser Permanente, the large California health maintenance organization.

"To date, the cause of this condition is unknown," added Pearson, who is leading the CDC's study.

Citovsky, who received a small grant from Morgellons Research Foundation, said the CDC rebuffed him when he offered to share his research. He was hoping to join the collaborative effort.

"I said, 'We're doing a little work on this, and do you want to know what we're doing?'

They said no.

"They've outsourced most of the work to Kaiser. That's my gripe. I believe in free science, but they do not want to exchange information."

Citovsky noted that his Morgellons research is only 1 percent of his lab's work. He hopes to continue with it in an attempt to better understand the disorder.