One day in 2003, Mary Leitao plucked a fiber that looked like dandelion fluff from a sore under her 2-year-old son's lip. Three pediatricians, three allergists, two dermatologists, and many misdiagnoses later, she realized she had a problem. Her toddler son, Drew, had developed more sores, with more fibers poking out of them. Sometimes the fibers were white, and sometimes they were black, red, or blue. He also believed that insects were crawling under his skin, something he conveyed, in two-year-old fashion, by pointing to his lips and saying "bugs."
It wasn't eczema, or an allergy that physicians could discern. Something was seriously wrong. But no one believed Leitao. The last doctor she tried to consult, an infectious disease specialist at Johns Hopkins University, not only refused to see her, but based on Drew's growing pile of medical records, suggested it was a case of Munchausen's by proxy, a psychiatric syndrome in which a parent pretends a child is sick or makes him sick to get attention from the medical system.
Frustrated, in March of 2004, Leitao picked a name for what afflicted Drew: Morgellons disease, from an obscure, 17th century French medical article describing an illness, called the morgellons, in which black hairs emerge from the skin. Then she put up a Web site. "I was hoping to hear from scientists or physicians who might understand the problem," she says. Instead, she heard from thousands of others, all describing the sores and fibers and an additional laundry list of neurological symptoms that included brain fog, fatigue, and muscle and joint pain, among others. "That's when I started to realize how big this problem was," says Leitao.
Many of the people who responded to Leitao's Web site—more than 8,000 as of March 2007—are, like Leitao, locked in conflict with doctors who don't believe they or their children are sick. This is not a new illness, say doctors, but a time-honored psychiatric disorder called delusional parasitosis; patients with the rare condition—mostly middle-aged women already anxious and depressed—claim to feel subcutaneous bugs. So-called Morgellons disease is just a variation on that theme. Medical skeptics complain that Leitao's Web site and the evocative name she chose are giving people a framework on which to hang their delusions, thus impeding the true, accepted treatment: antipsychotic drugs.
The debate has grown so heated that the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. "More typically we get a very credible indication of an emerging problem from an official source," says Dan Rutz, spokesperson for the CDC. "This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks." The CDC is in the process of assembling a multidisciplinary research team to examine a cluster of patients sometime in 2007.
Until then, the Morgellons mystery continues.
The Mainstream Viewpoint
Because skin symptoms are often the most visible aspect of this disease, dermatologists are usually the first to be consulted. Most have no doubt that what they're seeing is delusional parasitosis. One reason is that Morgellons patients often present them with what they consider to be hallmark evidence: a sample of what's in their skin. Psychiatrists call it "the matchbox sign," a reference to the little containers in which the samples are typically stored. (Some doctors now call it the Ziploc sign.) Morgellons patients often show up in the doctors' offices carrying Ziplocs full of fibers; dermatologists say they are simply fibers from clothing, embedded in self-imposed sores, whereupon they promptly offer a prescription for antipsychotic medication. Rarely, complain the patients, is their skin examined first. "You think you're bringing them evidence, but you're really just shooting yourself in the foot," says Leitao. "It just closes the door."
Noah Craft, a dermatologist at the Harbor-UCLA Medical Center in Torrance, California, has seen a handful of Morgellons patients, and talked with a number on the phone. He is one of the dermatologists who was approached by the CDC to take part in their investigation. He saw his first Morgellons case about three years ago. She came in talking about fibers. And though she didn't have a Ziploc with her, she was clutching a printout about Morgellons from the Web. Like many Morgellons patients, she'd been to 10 or 12 doctors before him, to no avail. Craft says that he, unlike many doctors, always examines these patients. There are a number of reasons one might have the sensation of crawling under the skin. For one, he says, there are real bugs, scabies, that do burrow into people. And withdrawal from drugs like methamphetamines can cause that sensation; so can chemical exposure, allergies, and dry, sensitive skin.
Once Craft had a patient whose crawling sensation turned out to be melanoma that had spread to her brain. "You have to do due diligence to rule out other causes," he says.
But when Craft examined his first patient, he found no evidence of anything unusual. And because he saw nothing, he felt no reason to do something as invasive as a biopsy. "I thought it was delusional parasitosis," he says. Gently, he suggested that the condition might be psychological. She never came back.
Tags:
brain fog,
dandelion,
dandelion fluff,
dermatologists,
disease,
eczema,
fibers,
hairs,
infectious disease,
infectious disease specialist,
johns hopkins university,
laundry list,
leitao,
medical article,
medical system,
Morgellons,
muscle and joint pain,
neurological disorder,
neurological symptoms,
old fashion,
psychiatric disorder,
skin,
toddler son
