Bizarre Morgellons remains a mystery

Is it a new disease?
The job of figuring out if Morgellons is, in fact, a distinct disease falls to Michele Pearson, M.D., the physician and epidemiologist directing the CDC study. Dr. Pearson trained in the raucous, violent emergency rooms of downtown Chicago before heading to the CDC. She says it is time for the CDC to tackle whatever the illness may be. “A number of people were calling in, not only those affected but providers, saying, ‘I’m seeing these patients; what should I do?’ and public-health professionals saying, ‘We’re getting reports to our health departments,’” she says, estimating that the CDC gets about 100 calls and e-mail messages about Morgellons each month. Dr. Pearson has spoken to a number of the Morgellons callers and met several and was moved by their plight. She says she is unwilling to prejudice her investigation by speculating on whether Morgellons is a medical problem, a psychiatric disorder or a media creation. Whatever the cause turns out to be, “the suffering these patients are experiencing is real,” she says.

Perhaps her most delicate task is to respect Morgellons patients’ pain and frustration without betraying the scientific rigor for which the CDC is internationally known. So the agency is moving cautiously. Its preliminary objectives are to understand Morgellons symptoms (the first step in sorting out how common the illness is), who is most vulnerable and what the cause might be. The study is a joint project with the northern California research division of the giant HMO Kaiser Permanente. California seems to be a Morgellons hot spot, and Kaiser uses electronic medical records — which allows investigators to search among 3.5 million patients for complaints of fibers and either skin lesions and/or itching or crawling sensations.

In May and June, investigators began inviting possible sufferers to Kaiser’s Oakland offices. Volunteers, who have taken a detailed survey about symptoms, travel history and their pets, among other things, submit to a physical exam and a neurological and psychological evaluation. This looks for evidence of the brain fog patients complain of and also pinpoints any problems such as obsessive-compulsive disorder and depression that might complicate the analysis. Finally, volunteers give blood and skin samples for a wide range of lab tests. All the data generated, hundreds of pieces of information per volunteer, will be poured into computer programs that look for patterns and anomalies. “At this point, it’s really basic information that we don’t know: Is it primarily men or women? Is it primarily the old or the young? Is it primarily people from certain racial or ethnic groups or socioeconomic backgrounds?” Dr. Pearson says. “This [research] will put a face on it.”

Strange symptoms
For months after the episode that launched her illness, Alisha Aitken says she has struggled with swollen, cystic lumps on her face and neck that turned raw and sticky “with the slightest touch of a T-shirt.” The lesions took months to heal and left her with scars that make her reluctant to be photographed, she says. She saw several doctors who offered different diagnoses: dermatitis, eczema, psoriasis. “They didn’t know what was going on, and I didn’t know what was going on either,” she says. “They did the best they could with what they had been given in medical school.”

With traditional medicine no help to her, she turned to alternative treatments, slathering her skin with molasses and zinc oxide (which did not help) and taking herbs to aid her memory and sleep. And, like White, she searched on the Internet for accounts that matched her symptoms. “Nothing fit, and then I found Morgellons and it fit to a T,” says Aitken, who now lives in Clarkston, Washington, with her daughter and longtime boyfriend.

Through the Charles Holman Foundation, Aitken found Randy Wymore, Ph.D., a medical school professor at Oklahoma State University at Tulsa who has become an unexpected champion of the Morgellons community. He was doing an Internet search on muscle fibers in the spring semester of 2005 when he stumbled onto a Web site discussing a fiber disease. Intrigued, he read for a moment, thought it seemed crazy, closed the link and went back to his other work. But the topic nagged at him, and a few days later he called up the search again.

Wymore says he assumed the people posting were unhinged and spinning wild obsessions out of dryer lint and pet hair. To satisfy his own curiosity, he e-mailed a few of those who had posted, inviting them to send him some fibers for analysis. “I was quite expecting people to say things like, ‘Well, if we try and ship them to you, they’ll disappear,’ or, ‘You can’t see them unless you have the disease, too,’” he recalls. “But 24 hours later, FedEx packages started arriving.”

He fished the samples — too small to study without a microscope — out of the packages and popped them onto a slide. “I didn’t know what to make of them,” Wymore says. Before he analyzed them, he collected fiber samples from his own life: sweater snags, threads from his jeans, dust bunnies. The samples from the patients did not look like these: tightly tangled, vividly red, blue, brownish, as well as some that were clear and smooth. He began collecting fibers everywhere he went — from his house, the medical school’s carpet, the hotel rooms his family stayed in on summer vacation, the pets at his daughter’s elementary school. Nothing he gathered looked like the Morgellons samples — but the samples, which by now had come from Texas, Washington, California, Pennsylvania and Florida, all looked similar to each other.

He and a colleague, pediatrician Rhonda Casey, M.D., then persuaded about 30 adults and children who claimed to have Morgellons to come in for interviews and physicals. They looked ill, sometimes thin and lacking in energy, and some had slurred speech. And Dr. Casey found something odd: tangled skeins of dark fibers, not stuck to the surface of rashes or popping out of pores, but buried in intact skin. Wymore asked two forensic experts at the Tulsa Police Department who had access to national fiber-identification databases to have a look at the fiber samples. They were stumped, he says. The fibers had no cuts or extrusion marks that would establish them as man-made and no internal structures such as cell walls that would make the case for natural origin. The fibers did not lose their color in any solvents or detergents. At 1,600 degrees Fahrenheit, they did not burn.

“So if you’d like a hypothesis as to what might be causing Morgellons, I can’t give you one,” Wymore says. “But there is no question that Morgellons is some sort of physical pathology. It is not a psychiatric disorder. And until someone else starts researching this in a fairly significant way, I can’t just go back to my other work and say, ‘Well, good luck, all you Morgellons people. Hope they figure this out.’”

White and Aitken have been living with their strange symptoms, and with the burden of being thought insane, for almost three years. “It’s unnerving to know more about your condition than your doctor,” White says. For both of them, being doubted has become a strange status quo, weirdly familiar without ever being welcome. “I don’t hold any hope in the CDC or any doctors, really,” says Aitken, who adds she is feeling better because she reduced the stress in her life and began using a nonmainstream medical treatment involving infrared heat. “Nobody really knows what is going on.”

As for White, she had been feeling better with fewer visible fibers on her skin. But she says the sense of hair “growing down” into her scalp is more pronounced than it was before. She started working this past summer, but her confident college-girl assumption that life will go well has been irrevocably shattered, and that seems as big a loss as her health. “If I got hit by a truck tomorrow, I don’t think I would be too upset about it — not because I’m suicidal, but more that I don’t know if I want to live this way for however many years I’m going to live,” she says. “Normal is not anything I ever aspired to be, but I don’t feel like I’m ever going to feel normal again.”

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