Online Campaign Sparks Interest in New Disease A vigorous online lobbying campaign has made a disturbing disease a priority for the Centers for Disease Control. Patients from California, Texas and Florida describe symptoms including rashes and sores, and the sensation of things crawling under their skin. Many sufferers believe they have something called Morgellons disease.
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Online Campaign Sparks Interest in New Disease

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Online Campaign Sparks Interest in New Disease

Online Campaign Sparks Interest in New Disease

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NOAH ADAMS, host:

This is DAY TO DAY. I'm Noah Adams.

MADELEINE BRAND, host:

And I'm Madeleine Brand.

Early next year, the Centers For Decease Control And Prevention will begin an investigation into what's come to be called Morgellons disease. This disease though may not actually exist, at least not physically. Patients with Morgellons believe they are infested with bugs, parasites or worms, and they think they have fibers and fuzz growing out of their skin. The CDC is proceeding unusually quickly with this investigation. It's an investigation that is fueled in large part by the Internet.

NPR's Patty Neighmond reports.

PATRICIA NEIGHMOND: Gail Anderson(ph) lives in Southern California with her 83-year-old mother in a modest apartment complex behind a shopping center. Anderson is 57 years old, but her room has a childlike appeal. A canopy draped over her bed. Cute little statues and dried flowers scattered about. It was six years ago when Anderson says she felt odd sensations: something crawling under her scalp, a feeling that fuzz balls were popping out on her back after she showered and dried off, and then, what ultimately send her to the doctor the first time.

Ms. GAIL ANDERSON: I thought that there were worms in my eyes. I felt as if something was eating out of the top of the tissue. And I could see in my left eye that there was something going on. And up inside the inner of my eyelashes, I had white spots that all looked like tiny little eggs. And I had showed them to friends of mine at that time. And they said that's weird; it wasn't, you know, the sandman type of thing. It was - they were little white, like little eggs all in here, crusty, and then, on the outer of my eyelid. So, I attributed this to the sensation I feel in my eyeballs.

NEIGHMOND: But Anderson's doctor found nothing wrong. Then Anderson says fibers, brightly colored red, green and blue ones started popping out all over her skin and her arms and legs. She got rashes and lesions. Eventually, Anderson saw a dermatologist who took a skin scraping and sent if off to the lab. The result, the scraping was classified as debris, no bugs, no worms. Anderson didn't buy it.

Ms. ANDERSON: You think you're going to go and get some understanding and some treatment, and some compassion, but you don't. There is no compassion there. You're a loony tune.

NEIGHMOND: Meanwhile across the country, another woman was equally frustrated, Mary Lato(ph) noticed fibers coming out of her 3-year-old son's skin, as well as lesions and rashes. Her little boy seems to think he had bugs on him. Lato took him to lots of doctors, but like Gail Anderson, she wasn't satisfied with the answers she got. For a while, her son was treated for scabies mites. At one point, Lato took a scraping from his skin and looked at it under a microscope.

Ms. MARY LATO: What I was expecting to see were scabies mites. And what I did see were what appear to be balls of fibers. And there were dozens and dozens of them. A lot of them are white; some were blue, and occasional pieces of red. Lato says doctors couldn't or wouldn't analyze the fibers.

Finally, she turned to the Internet. I did some searches for the life cycle of scabies mites, and didn't see anything, which would explain this material. And I ended up on a scabies message board and met some people who saw me posting about these fibers. And they contacted me to say essentially if your child has fibers coming out of his skin, then you have a bigger problem than you realize.

NEIGHMOND: They told her they had similar symptoms, and had tried for years without success to find out what was wrong.

Ms. LATO: At that point, not finding anything in the literature, realizing that other people had the illness, and had had it for a while without any resolve. I decided if I put up a Web site with some micrographs, microscopic photographs, that maybe some scientists or some medical researchers, who knew something about this illness might contact me, might help me understand what was wrong with my child, and how to make him well.

NEIGHMOND: Today, Mary Lato is overwhelmed by her Web site. She has 3,300 unread e-mails, and no idea how she'll ever get to them. She says most people want emotional support and referral to a doctor who will take their symptoms seriously. Some find their way to internist Rafael Stricker, who's listed on Lato's Web site as part of the Medical Advisory Board.

Dr. RAFAEL STRICKER (Internist): What we hear from these patients is that they've often gone to, you know, 10, 20 physicians who all pretty much, you know, turn up their noses and say oh, you know, I don't know what this is, therefore its nothing.

And a lot of these patients, you know, basically gave up after a while. They just said, look, I'm going to get the same story from every doctor I go to. So why bother? And they would just suffer in silence. And now, through the Internet, and this is not just true of Morgellons, it's true of other diseases. You can find physicians who are more sympathetic to these types of problems, and who can take care of these patients.

NEIGHMOND: Stricker says patients fly from all over the country to see him or his partner, a nurse practitioner who's treating 200 patients who believe they have Morgellons. Stricker says there's no cure, but cycles of antibiotics and drugs to kill parasites seem to help. CDC officials say the agency has been hearing about this problems for years now, but clearly, people going on the Internet has made things happen faster.

Lato's Web site called on patients to write their members of Congress. Members of Congress wrote the CDC and the CDC started an investigation. CDC officials say the Internet is a double-edged sword, offering some good information, but a lot that's simply not credible.

Dermatologist Mark Horowitz couldn't agree more. He says he's never seen evidence of fibers or parasites, but he's seen dozens of patients who believe they have them. To Horowitz, it's obvious the patients have been picking at themselves, creating the skin lesions. Horowitz says a description of their disorder is in the official manual of mental illnesses.

Mr. MARK HOROWITZ: The disease is what's classified as a delusional disorder or psychosis, often referred to now as Morgellons. But we believe that it's a biochemical imbalance in the brain that causes them to believe that they are infested with parasites.

NEIGHMOND: Psychiatrist say the mental illness may be helped by anti-psychotic medication. But people who believe they have Morgellons, like Gail Anderson, don't believe they have delusions so they won't take the medication. And Horowitz says Web sites like Mary Lato's don't help.

Mr. HOROWITZ: There's now a Morgellons society. And the problem is that when you go to their website, no where on there do they talk about that this could be a delusional disorder. And the problem with that is that you're reinforcing these people's belief, and preventing them from trying a medicine that will actually work for them.

NEIGHMOND: CDC officials expect their investigation into what patients call Morgellons, to take about six months and cost hundreds of thousands of dollars.

Patty Neighmond, NPR News.

BRAND: NPR's DAY TO DAY continues.

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