‘Disease’ creates medical mystery: Though many doctors dismiss Morgellons as a delusion, for those who suffer it, the pain is real.

By ALAN BAVLEY
The Kansas City Star

It started last year with what Cindy Wick thinks was a tick bite.

Then came the sensation of biting insects from red spots all over her body.

When Wick rubbed the spots, they burst open. From these sores, she pulled white fibers a half-inch long. The pain subsided, but the ordeal wasn’t over. The painful red spots continue to appear.

“This is the scariest thing that has ever happened to me,” said Wick, 49, of Kansas City. “I wouldn’t wish this on my worst enemy.”

Wick is convinced she has Morgellons disease, a mysterious condition marked by the sensation of insects crawling under the skin and sores that erupt and release black specks or fibers that are white or clear, or even blue or red.

Sufferers also complain of memory loss, poor balance and difficulty paying attention.

Thousands of people across the country think they have Morgellons, and their numbers have grown rapidly.

Although the medical community is far from convinced, the Centers for Disease Control and Prevention will investigate.

Morgellons is not a recognized disease but a condition named just a few years ago by the mother of a boy who suffers the symptoms.

Many doctors dismiss patient complaints as simple insect bites or delusions of being infested with parasites. The fibers are nothing but bits of skin or lint from clothing, they say.

“Until someone can prove it to me, I’m not going to believe it,” said Stacy Beaty, a dermatologist at St. Louis University.

“I usually diagnose these patients with delusions of parasitosis.”

But a small number of doctors and scientists have begun to take Morgellons seriously. Their preliminary findings suggest at least some sufferers have real symptoms that don’t fit doctors’ usual explanations.

The CDC announced its investigation after a barrage of phone calls, and even inquiries from members of Congress.

“Our mind is open to all possibilities,” said CDC spokesman Dan Rutz. “We know that people are suffering, but we don’t know why.”

Wick’s problems started after she moved from Kansas City to a house in South Carolina last year.

One night, she said, “I could feel biting all over me.”

Wick went to doctors, who told her she had a spider bite, or scabies, or flea bites. She hired an exterminator and used bug bombs. Nothing helped.

She said she saved fibers and took them to a doctor.

“He would totally disregard them,” she said.

One time, as a doctor watched, Wick said, she pushed a fiber from one of her fingers. The doctor pulled it out with tweezers and left the examination room.

“He came back and said it was nothing, just skin,” she said. “I sat outside in my truck and cried for a while.”

Covered with sores, Wick could no longer keep her sales job. Medical bills exhausted her savings. In August, she returned to Kansas City, where her son takes care of her.

“I told him something is so wrong with me and nobody believes me,” she said.

Many medical conditions, from insect infestations to strokes or drug abuse, can cause the kinds of itching and skin-crawling sensations associated with Morgellons, said Thelda Kestenbaum, a dermatologist at the University of Kansas Hospital.

Beaty said she thinks a lot of the patients’ issues are psychological. Skin problems and psychiatric disorders often go hand in hand.

About 14 percent of dermatology patients who complained of persistent itching had undiagnosed obsessive-compulsive disorder, researchers in New York found.

In another study, more than a fourth of 2,600 dermatology outpatients surveyed reported psychiatric symptoms such as depression and anxiety.

Morgellons disease is named after a similar-sounding condition described in 17th century France. The name was applied to modern-day cases by Mary Leitao, founder of the Morgellons Research Foundation.

Leitao’s organization, which has about 8,000 families in its registry, has been instrumental in getting Morgellons large amounts of publicity, primarily on television and through the Internet.

“The focus should be on what’s causing this, who’s at risk,” Leitao said. “Research is the key, but in the meantime, patients need support.”

Some doctors, including Raphael Stricker of San Francisco, are beginning to offer support.

“I think it’s a real disease. It’s really quite a strange disease,” Stricker said. “Writing everyone off as delusions of parasites is wrong. … These are people who were perfectly sane before they developed these symptoms.”

Stricker is an expert on infections such as Lyme disease that are carried by ticks. Some of his Lyme disease patients later developed Morgellons symptoms. That suggests that Morgellons also may be carried by ticks, he said.

Stricker has sent biopsies of his Morgellons patients to researchers at Stony Brook University in New York. Some were found to carry bacteria that attack plants.

“Ticks can carry plant bacteria,” Stricker said.

Randy Wymore, a scientist who teaches pharmacology and physiology at Oklahoma State University, has worked with a staff physician who inspected the skin of about 25 patients who complained of Morgellons. In every patient, the doctor found clumps of fibers under the skin, even where there were no sores.

Wymore took Morgellons fibers to the Tulsa, Okla., police crime lab for analysis. It determined that the fibers weren’t from any known textiles, nor did they match anything in a database of 900 fibers.

“We don’t know what this is yet,” he said. “But I think most people would agree they shouldn’t be under a person’s skin.”