LISTEN TO A NIGHTMARE: You wake up one day and notice some reddish spots on your body; they itch a bit, sting a little. You think you’ve been bitten by bedbugs or something. But the next day, the spots are oozing. Now you reach for the Neosporin, but instead of healing, the sores sprout tiny black granules and blue, red, and translucent threads. You feel as if bugs are crawling all over you. By the time you get to the doctor, you’ve developed severe pain and swelling in your joints, a weird mental fogginess, and an understandable depression. The doctor runs lots of tests but thinks it’s all in your head. Then you wake up.
Or not. For 4,500 Americans, this is a nightmare they can’t awaken from. They suffer from Morgellons disease, which you no doubt have read about on the Internet and in the papers as our latest disease du jour. Naturally, Texas is at the forefront of this bizarre outbreak—second to California in incidence—as it was with avian flu and antibiotic-resistant staph infections. No, I’m not making any of this up, though there certainly are doctors who think their patients are. Just what is Morgellons? A real disease, something from a leftover Wes Craven script, or just another Internet invention?
Bug or bunk?
Morgellons awareness started about five years ago, when a Pennsylvania mother, Mary Leitao, noticed that her two-year-old son, Drew, was developing lesions that looked like scabies. But when she rubbed scabies cream into her baby’s skin, small “fuzz balls” of blue, red, and translucent filaments—much like lint—came off on her hands. She went to a dozen doctors, most of whom said the strange filaments were threads from Drew’s clothing that had affixed themselves in the sores. Unconvinced, she consulted dermatologists at Baltimore’s prestigious Johns Hopkins School of Medicine, who told her she had Munchausens syndrome by proxy, a psychiatric disorder in which mothers fabricate their children’s symptoms to gain attention. “That was the only diagnosis,” she told me. So, after finding an obscure historical reference to a similar condition called Morgellons in seventeenth-century Britain (she herself is a biologist), Leitao took matters into her own hands and formed the Morgellons Research Foundation, a nonprofit with a Web site designed for any fellow sufferers to report their symptoms.
Before long, thousands of people had registered on the site, providing some insight into how widespread the condition might be. Clinicians such as Austin nurse practitioner Ginger Savely contacted Leitao with stories of patients with similar symptoms, and researchers such as molecular biologist Randy Wymore, of the Oklahoma State University Center for Health Sciences, e-mailed to offer research help. As with everything else on the Internet, however, undocumented diseases like Morgellons are also fair game for skeptics, and soon a Web site called Morgellons Watch popped up, alleging that these patients were nuts in various ways. Aside from Munchausen’s, the site correctly notes the belief of some doctors that Morgellons may be the product of a psychological disorder known as delusional parasitosis—imagining that bugs are crawling under your skin to the extent that you self-mutilate, thus causing the lesions and filaments. Other less plausible theories include electromagnetic pollution, crystal meth, the profit motive, and, of course, the Pentagon.
Interestingly, in the single research paper written on the disease by Leitao, Savely, and San Francisco doctor Raphael B. Stricker, there’s evidence that some degree of mental illness exists in many patients. A good example is 23-year-old Travis Wilson, of Leander, who died of a toxic reaction to medication last spring after a months-long bout with Morgellons. “He had had depression and a problem with heroin,” his mother, Lisa, told me recently. “But it was the Morgellons that killed him. He couldn’t finish school, couldn’t work, stopped going out because of his lesions. But all any doctor said was that it was delusional.”
So what in the hell is it?
“I have absolutely no idea,” says Wymore, who began researching Morgellons in earnest last year. “What I can say is that people aren’t making it up.” Wymore has examined scores of clothing fibers under his microscope; none have matched the Morgellons strands. Nor, he says, do the strands resemble bacteria or mold or anything produced by the human body. As for whether these people are just crazy, he recalls a day when he and other scientists viewed the normal skin (showing no lesions) of Morgellons patients magnified by microscope and projected onto a high-resolution screen. “You could see bundles of these fibers under healthy skin,” he says. “How could you self-mutilate your way to that?”
One of the more intriguing findings researchers have made is that a high percentage of Morgellons patients also test positive for Lyme disease, an infection that manifests many of the same symptoms. This has led to speculation that it may be a secondary infection that moves into Lyme sufferers once their immune systems are weakened. Many Morgellons patients placed on a rigorous protocol of antibiotics—the typical treatment for Lyme—have seen symptoms recede, but sometimes only after years. “Almost everyone I’ve treated has had chronic Lyme disease, HIV, or was using immuno-suppressant therapy,” says Savely, who has seen about 150 Morgellons patients and many more Lyme sufferers. “I’ve heard of an HIV doc in San Francisco who has fifty Morgellons patients. It’s about weakened immune systems. And it’s not just contact; it’s something injecting itself beneath the skin. It reminds me of when Kaposi’s sarcoma began showing up in the AIDS outbreak in the eighties.”
If this is an answer, however, it should be pointed out that California, Texas, and Florida—the leading Morgellons states—all have relatively low rates of Lyme. Fortunately, the Centers for Disease Control and Prevention (CDC) has finally agreed to conduct a full-scale study of Morgellons to sort out this and other inscrutables. Defining and declaring a new disease is always dicey and often political: Balancing the complaints of patients, the skepticism of doctors, and the limitations of biomedical research—not to mention the financial interests of the insurance companies who might have to pay for treatment—can be almost impossible. (Look at how long a condition such as Gulf War syndrome has been around without achieving official status.) Still, when it comes to making such calls, no agency has more weight than the CDC.
In the meantime, Morgellons will continue to enjoy its more than fifteen minutes of fame. “My wife is a registered nurse,” says Wymore, who has dropped other research to concentrate on the mysterious condition, “and I can safely say that a day doesn’t go by that we don’t talk about this.”
A Puzzle Piece? The lowdown on Lyme.
Lyme disease, which showed up on the public health radar in the early eighties, is caused by the bacteria Borrelia burgdorferi and contracted from tick bites. It is the leading vector-borne (transmitted by an outside agent, such as an insect) cause of infection in the U.S. The surest sign of Lyme infection is a spreading bull’s-eye rash (clear center) on the skin that appears three to thirty days after a bite; mild fever, fatigue, and sore joints usually follow. Though Lyme disease is rarely fatal, it can become chronic, with advanced symptoms including joint pain and peripheral neuropathy (numbness in feet, hands, and face) that can last for years. Lyme can almost always be cured with antibiotics, but there is no vaccine, so you can be reinfected by another tick bite. If you find a tick feeding on your ankle, try to capture the critter so your doctor or local health department can test it. Monitor yourself for symptoms for thirty days.