Four years ago, 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 2-year-old fashion, by pointing to his lips and saying "bugs."
It wasn't eczema, or an allergy that physicians could discern. Something was wrong. But no one believed Leitao. The last doctor she tried to consult, an infectious disease specialist at Johns Hopkins University in Baltimore, 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 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 a list of symptoms that included brain fog, fatigue and muscle and joint pain, among others.
Many of the people who responded to Leitao's Web site, like Leitao, were 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 U.S. 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.
"This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks," says Dan Rutz, spokesman for the CDC. The CDC is assembling a multidisciplinary research team to examine a cluster of patients.
Until then, the Morgellons mystery continues.
Skip the Ziploc
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, Calif., 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 three years ago. She came in talking about fibers. And though she didn't have a Ziploc bag with her, she was clutching a printout about Morgellons from the Web. Like many 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. 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 nothing unusual. And because he saw nothing, he felt no reason to do a biopsy. Gently, he suggested the condition might be psychological. She never came back.
Since then, with other Morgellons patients, he has taken the examination further and biopsied their skin. But he's seen nothing to suggest it's a real condition -- especially not fibers in the patients' skin. In fact, the only place Craft says he has ever seen the fibers are on Leitao's Web site. From his computer screen, he says, "they look like fibers of fabric and, on occasion, collagen fibers from within the skin. In the biopsies I have taken, there appear to be only normal skin and inflammation, as one would find in a bump that has been picked at."
While most physicians seem to lean toward the delusional parasitosis diagnosis, a handful of people think there's something real going on here. About a year ago, Oklahoma State neuroscientist Randy Wymore stumbled upon Leitao's Morgellons site and became intrigued. Wymore called Leitao and asked if there were any fibers he could look at.
Within days, Ziplocs were arriving in the mail from around the country. Though the fibers all resembled one another, he says, they looked like no other synthetic or natural fiber he compared them to. Ultimately, he asked fiber experts on the Tulsa police department's forensics team to examine them.
First they employed a type of spectroscopy that identifies the chemical structures of fibers and compared them to their database of 800 fibers. No match.
Next they subjected fibers to gas chromatography. Compounds put through this process are encased in a vacuum chamber and exposed to high heat; the temperature at which they reach boiling point is a clue to what they are made of. The forensic experts had a database that included the boiling point of 90,000 organic compounds with which to compare the fibers. But the machine ran to its highest temperature, 1,400 degrees, and apart from some slight blackening, nothing happened.
"The conclusion we were left with is that they are unknown fibers, not simply contaminants from clothing sticking to scabs," says Wymore.
Wymore, who is not a physician, also asked Rhonda Casey, the chief of the pediatrics department at Oklahoma State University Hospital, to take a look at some patients for him. "Honestly, when he first told me about it, I thought, they're all nuts," says Casey.
But she changed her mind. "There was not one patient I saw who did not look ill," she says. What's more, they all looked ill in the same way, with neurological symptoms, including confusion, foot drop, in which a person loses control of his or her foot and has trouble walking, and a sagging mouth when they spoke. Many had been diagnosed with atypical forms of neurological diseases like Parkinson's or amyotrophic lateral sclerosis (Lou Gehrig's disease).
She examined their skin via a dermatoscope, a light tool with a magnifying lens. And she did biopsies on both their lesions and apparently healthy skin. She says she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin. But some -- the black, red and blue ones -- are blatantly obvious, she says. One young girl had a small pimple on her thigh with a bundle of black fibers just barely protruding from it. Many doctors have accused these patients of embedding fibers in the sores themselves, but Casey doesn't believe it.
"As a physician, I can't imagine reproducing what I saw in that little girl's leg."
There's also some evidence of an overlap with Lyme disease. Ginger Savely, a San Francisco nurse practitioner with a long history of treating Lyme patients, now sees Morgellons patients and says 90 percent of them test positive for Lyme disease. "I think that one of two things is happening," she says. "Either there's a co-infection people are getting at the same time they get Lyme, because there are a lot of infections spread by ticks." Or whatever is causing Morgellons is something ubiquitous that many of us are exposed to, but the disease develops only in people with weakened immune systems, like those with Lyme disease.
Morgellons in mind
One complicating factor, as even Leitao and Casey admit, is that there are neurological and psychological symptoms that come with Morgellons that make the patients difficult to deal with at times and make it seem as if they really belong on the psychiatrist's couch.
"Patients start to act unusual," says Casey. "They get forgetful. They often have a speech hesitation, and they often have a hard time telling their story coherently."
To her, it's not surprising. "The disease affects the brain."
Beyond all that, being told it's all in your head when you feel sick is bound to be hurtful, says one Morgellons patient who happens to be a clinical psychologist. The hurt leads to contentious encounters with doctors, who then feel more justified than ever in seeing the patients as psychiatrically disturbed.
Casey says her stance on Morgellons is legitimate because of the many cases she's seen. Most doctors opining about the condition -- Craft, for instance -- have seen just a handful of patients.
"It's a disgrace," Casey says of medical peers who dismiss patients without studying the phenomenon in full. Physicians want to walk into a room, know what's going on, and write a prescription. Many will make a diagnosis of delusional parasitosis or hypochondria more readily than conclude an office visit without a diagnosis. Nor is the system set up to investigate an unknown quantity.
"If you send a fiber sample to lab, the report will often come back saying textile contaminant," says Casey. But she watched one laboratorian label a fiber by simply looking under a microscope. "I said, 'How can you tell?' And he said, 'I'm looking at it.' And that's how it's done in every lab across the country."
On a deeper level, the structure of modern medicine can discourage examination of complex disorders.
"One way to think of it is that there's quite a bit of cross talk between the immune system and the nervous system," Banfield said. "But there isn't a lot of cross talk between psychiatrists and immunologists and infectious disease doctors. The way we've compartmentalized specialties contributes to our difficulty in dealing with problems like this."
Down the road
It's hard to say yet which pattern the Morgellons phenomenon will follow. Will it be the next Lyme disease, validated by the medical community? Or will its victims reside in diagnostic purgatory forevermore? Medicine is full of illnesses that sounded like psychological ailments at first but are now linked to invasive pathogens.
Ulcers are caused by spirochetes, not stress. Syphilis is a bacterial infection that reaches the brain, not a kind of insanity. Tuberculosis is another infectious disease, not the psychosomatic illness it was first thought to be.
But while these stories become bits of medical lore, the stories of the patients who were caught in the middle of the confusion are rarely told. Mary Leitao says she never wanted to be an activist. "I'm just a scared mother," she says. And she wants an answer, whatever it is, soon.
Not long after Drew became symptomatic, his two older siblings, Jeremy, 16, and Samantha, 17, started exhibiting signs of it, too. Samantha is plagued by cognitive problems, fatigue and joint pain. She was once in the gifted program; but now, in her senior year of high school, just started homebound instruction. Jeremy also suffers fatigue and some cognitive problems. Drew, now 8, doesn't seem to be cognitively afflicted, but his skin, she says, is riddled with sores and scars.
There are other families in which more than one person suffers from the symptoms, says Leitao. But rather than see that as an indication of the disease's infectious nature, the medical community has labeled it "folie a famille" (madness of the family). They have, she says, an explanation for everything.