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.
Since then, with other Morgellons patients, he has taken the examination further and biopsied their skin. But he's seen nothing to suggest that 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, there are a handful of people who 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 fiber samples 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 the 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 compound 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 fiber experts were mystified. "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 of the patients for him, to get a medical opinion. "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 their 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 on My 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."
New Jersey psychiatrist Robert Bransfield, who has a number of Morgellons patients, agrees. "They don't start out difficult to deal with," he says. "But when it progresses, it can result in quite extreme paranoia, even delusions." Others have been diagnosed with bipolar disorder, ADHD, autism, and even atypical Parkinson's as a result of their personality change.
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 working with chronic-pain patients, who are in doubt themselves. The hurt leads to contentious encounters with doctors, who then feel more justified than ever in seeing the patients as primarily psychiatrically disturbed. Indeed, the medical literature on delusional parasitosis is full of discussion about how to broach the subject without alienating the patient. An article on Morgellons in the November 2006 issue of the Journal of the American Academy of Dermatology actually argues that Morgellons is a gift of sorts—a way of suggesting the delusional parasitosis diagnosis without having to use the off-putting word "delusion."
Casey says her stance on Morgellons is legitimate because of the many cases she has seen. Most doctors opining about the condition—Craft, for instance—have seen just a handful of patients at best. "I think it's a disgrace," she says of medical peers who have dismissed the patients without studying the phenomenon in full. Physicians are busy and have about 10 minutes to spend with a patient, she adds. They want to walk into a room, know what's going on right away, and write a prescription. Something unusual is time consuming and difficult, she says, and many doctors don't have time.
Besides, doctors are trained to find an answer. Many will make a diagnosis of delusional parasitosis or hypochondria more readily than conclude an office visit without a diagnosis. Nor is the system necessarily 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." That's why she asked forensic fiber experts to take a look.
On a deeper level, the structure of modern medicine can discourage examination of complex, multisystemic disorders. Most doctors are still poorly prepared to address illnesses with both physical and psychological components. "Your average physician does a one-month rotation in psychiatry in medical school," Bransfield says. So when there's a disorder that has physical and psychiatric symptoms, physicians often don't understand how to put all the pieces together. "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 adds. "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." When diagnoses are in this gray zone of understanding, they often end up in the field of mental health, he says, even when there's a solid physiological cause.
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 phenomena that sounded like psychological ailments when first proposed 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, and the names of the scientists who made the discoveries are now well-known, 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 from fatigue and some cognitive problems. But he pushes himself to get to school. "I'm not sure how much longer he can push himself," says Leitao. 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 too, 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.
Diseases Under Fire
The controversy over Morgellons is just the latest example of medical establishment skepticism. Diseases greeted with incredulity in recent years include:
Chronic Fatigue Syndrome: A disorder characterized by persistent and crippling fatigue unrelieved by rest, tender lymph nodes, trouble concentrating, muscle and joint pain, and headaches. Lab tests may reveal nothing unusual.
Status: Generally accepted. The CDC recognizes it as a legitimate disorder.
Fibromyalgia: A chronic pain disorder in which sufferers complain of aching in their muscles, ligaments, and tendons. It may be triggered after an illness or after injury impacts the way the nervous system processes pain.
Status: Mostly accepted; some doctors are still skeptical.
Chronic Lyme Disease: A syndrome of pain, fatigue, and cognitive symptoms that continue after several weeks of treatment for documented acute Lyme.
Status: The subject of medical debate with two camps arguing over whether it is infectious or post-infectious.
Multiple Chemical Sensitivity Syndrome: Low levels of exposure to chemicals like gas, perfume, and smoke cause symptoms, including extreme fatigue, burning eyes, wheezing, breathlessness, muscle and joint pain, and poor concentration. It's also known as idiopathic Environmental Intolerance.
Status: Hotly debated.
Gulf War Syndrome: After troops returned from the Gulf War in 1991, many veterans complained of fatigue, joint and muscle aches, cognitive problems, headaches, and respiratory difficulties.
Status: Still under debate; some speculate it may be related to MCSS.