Sunday, November 25, 2007
News

Parasite, disease—or madness?

CDC edges closer to investigation of mysterious “Morgellons disease”

By Stephanie Ramage

On Nov. 1, the Centers for Disease Control and Prevention announced that it had chosen an outside entity, Kaiser Permanente, to conduct an investigation into the strange phenomenon known as “Morgellons disease.” The announcement was made almost a year and a half after the CDC had said it would look into the odd illness, which most doctors believe to be a figment of the imaginations of the thousands of people who claim to suffer from it.

The choice of Kaiser Permanente spurred the Morgellons sufferers picketing outside the CDC’s Clifton Road location to switch slogans like “Julie Gerberding killed Karen Stern” for “Why Kaiser?” There among them, with a large, raw-looking blemish shining on her right cheek, was Kelly Pickens, a 38-year-old former nanny who admired Stern, an established musician whose suicide on Oct. 29 resulted from the maddening symptoms of Morgellons.

Or, at least, that’s what the Morgellons sufferers say. Much of the medical establishment claims that suicides among Morgellons sufferers are to be expected since, after all, these people are mentally ill, suffering from delusional parasitosis, a condition that makes them believe there are parasites crawling on their skin and biting them. The lesions, like the one on Pickens’ face, are widely dismissed as self-inflicted wounds or the result of the incessant scratching that the delusional parasitosis elicits. They say that the fibers that seem to grow from the lesions are probably just lint or fabric fibers that have adhered to the crusty or oozing opening in the skin.

The CDC’s announcement, just like the one its officials made in June 2006 assuring the public that its scientists would look into the illness, may have gotten a “what took you so long?” from those who claim to have the disease—and many of them are wary of an HMO like Kaiser being put in charge of the investigation. But, Pickens says, everything the CDC does that treats Morgellons with the same seriousness it accords other illnesses helps Morgellons sufferers.

“Doctors are beginning to listen to us and actually try to help us,” she says. “And that’s really because of the CDC.”

IT’S ALL IN YOUR HEAD

The first doctor Pickens saw told her to go to a psychiatrist.

Before she came down with the symptoms of Morgellons, Pickens had been employed as a nanny for the same family for almost 10 years. She played softball on local teams that met up on weekends throughout Atlanta and Decatur, and she was active in local pet rescue groups. Shortly before the itching started, she had rescued a feral kitten from underneath a house. She connects the two events—the itching and the contact with the kitten—because some health practitioners who have taken up the Morgellons cause have pointed out that many of those who claim to have Morgellons test positive for Lyme disease, a tick-borne illness. There are similar symptoms.

But there are also symptoms reminiscent of a recently discovered group of diseases believed to be caused by prions, proteins that can exist harmlessly in one’s cells until certain factors come together, or through other means—prions are still largely a mystery. Among these prion-related diseases are “mad cow” disease in cows and humans, Creutzfeldt-Jakob disease in humans, and something called “scrapie”—a condition characterized by incessant itching with no external irritant—in sheep.

Pierluigi Gambetti, a leading prion researcher at Case Western Reserve University in Ohio, says he’s not familiar with Morgellons, but he’s willing to look into it. He studies the brains of deceased patients with prion diseases.

“I am a neuropathologist, so I would welcome the opportunity to study brain tissue from a patient with that disease if it is available,” Gambetti writes to The Sunday Paper. Nonetheless, there are also Morgellons symptoms that ring true for real parasitic infestations. Some sufferers swear by ivermectin, an anti-parasite medication used on animals. Pickens has tried it, with some limited success.

And, too, some of its sufferers’ behaviors are like those of people who suffer from delusional parasitosis. Morgellons could be anything. No one knows what it is or if it is infectious—its sufferers are divided on this latter point. Pickens, however, was so afraid that it was contagious that she quit her job as a nanny shortly after the crawling-skin sensation started. That was three years ago. She’s applied for disability payments from the government and has been turned down twice.

IS IT CONTAGIOUS?

A woman who identifies herself only as Leslie answers the phone for the Morgellons Research Foundation in New York. She’s a volunteer. The foundation, she says, has very little funding, but about 10,000 people subscribe to its newsletter. She also says she has the disease. Like Pickens, she believes it’s contagious.

Three years ago—just about the time that Pickens started itching and broke out in lesions—Leslie’s mother returned from her vacation home in Florida convinced that the place had become infested with mites. A neighbor, she told Leslie, had a dog with some kind of skin problem and had brought the dog over. Later, when Leslie’s mother sat in the chair where the woman had sat, she began itching violently, and felt something bite her repeatedly. She returned to New York and came to Leslie’s house having destroyed all of her clothing and bedding, thinking that this would get rid of what she believed to be parasites.

But then Leslie started itching. And then, so did Leslie’s 15 year old daughter. Her daughter, she says, attends an exclusive private school and she absolutely does not want word to get out that she has a parasite that may latch onto other students, so she won’t give her last name. But, to her knowledge, in the three years that Leslie, her mother and her daughter have had the problem, they have never transmitted it to someone else.

Leslie says she’s only suffered from the skin-related symptoms, the itching and lesions. She has not suffered the chronic fatigue, joint and muscle pain and cognitive difficulties, like short-term memory loss, that plague other sufferers. Her dermatologist has been supportive and even arranged for her to go before a panel of doctors at a medical school.

Those doctors issued a diagnosis with which Leslie’s dermatologist disagrees, but it’s one Kelly Pickens and many like her have heard many times before: “They said it was delusional parasitosis,” Leslie says.SP