Bizarre Morgellons remains a mystery

By Maryn McKenna

updated 9:40 a.m. ET Sept. 26, 2008

For Emily White, it felt like the worst flu ever. It was in the spring of 2006, and White was pushing through her final term at college. Sure, she was stressed and run-down. But she just didn’t understand how her symptoms could be so intense.

White, then 22, was headed to law school, and would lie awake at night, her mind running nonstop over paying for school, keeping her friendships going, maintaining her 3.8 grade point average and living up to the law-firm job she’d snagged for the summer. She was exhausted, yet sleep was impossible.

This didn’t feel like run-of-the-mill anxiety, though. It was something physical. All over her body — throat, armpits, groin — her lymph nodes swelled up, and she ran a fever. Her face grew lumps, painful and hot, like cystic acne that refused to get better. She dragged herself to class but had trouble putting words together.

And then, within a couple of weeks, the lumps on her face sprouted…something.

At first, she thought they were hairs and tried to yank them with tweezers, but they felt “rooted in cement,” she says. Her skin had always been good; but for the first time in her life, she spackled on concealer to try to hide the bristly rash.

White’s “flu” persisted for months. Her fingers swelled, and her joints ached. She swung between nights of nerve-twanging insomnia and days when she slept so deeply she never heard her alarm. In her first semester of law school, her grade point average plunged to 1.2. During her second semester, in 2007, she went on medical leave and moved in with her parents in northern Connecticut.

At about the same time, in a suburb of Seattle, pet-salon owner Alisha Aitken, then 30, was grooming a golden retriever that she’d pampered every month for years. Suddenly, she felt a flush of heat across her body — “as though 100 bees were stinging my face,” she recalls — and ran to a sink to splash herself with cold water.

As she straightened up from the faucet, she caught her image in the mirror. A 2-inch-long filament — stiff, like a dog’s whisker — was emerging from the outer corner of her right eye and running along the skin of her cheek to her lip. When she scraped it off, it left a shallow red scar. 

The next day, she broke out in a swollen, oozy rash. A week or so later, confusion set in. Cooking dinner for herself and her toddler daughter one night, she found herself staring at the stove, incapable of comprehending which was the left and which was the right burner. After a couple of months, increasingly sick and unable to focus, she sold her business.

White and Aitken have never met or spoken, but they are two of thousands of people in the United States and a handful of other countries who insist they are suffering from a bizarre new disease that doctors say does not exist. The two women could be imagining things. They could be mentally ill. They also could be, and believe they are, examples of how difficult it is to force medicine to confront something new and strange — a condition that is not in the textbooks, not in the research journals and not on the list of things that insurance companies pay for.

People who are afflicted by such lesions, fibers and bouts of cognitive haze say they hope their status in the eyes of the medical community is about to change. After two years of deliberation, the Centers for Disease Control and Prevention in Atlanta — the federal agency that fields an elite corps of disease detectives — is looking into their complaints. The investigation, which will not report its findings until next year, could explain their weird symptoms or reject them as the inventions of sick minds. White and Aitken say they are absolutely sure they are not crazy. “I’d rather have cancer,” White says. “I know how that sounds. But at least then you get sympathy. And a treatment plan.”

Real or imagined?
The syndrome is being referred to as Morgellons. The name appears in a 1674 essay that describes an outbreak of “harsh hairs…unquiet symptoms…coughs and convulsions” among French children, but whether the moniker refers to the same disease is not known. Mary Leitao, a biologist in a town near Pittsburgh, found the term in a 1935 medical journal article when she was looking for an explanation for an eruption on her 2-year-old son’s lip. She went on to found the Morgellons Research Foundation, a Web-based group of self-described patients that now has more than 12,000 members.

At the time White moved in with her parents, she’d never heard of Morgellons. Her exhaustion, body aches and brain fog had endured for so long that at one point she thought she might have mononucleosis. But mono couldn’t explain the papules that wouldn’t heal or the fibers that grew out of them. White’s doctor, she felt, dismissed her concerns but gave her antibiotics in case she had a low-grade infection. A second doctor did a blood test for various types of cancer. She saw a rheumatologist, who ruled out fibromyalgia. She also saw a dermatologist, who, she says, suggested she had a compulsion that drove her to pick her skin and recommended group therapy. White doesn’t like to discuss it, but her sister confirms that some family members don’t believe she has Morgellons, either.

To White, none of the doctors’ explanations made sense. She itched constantly and describes “painful crap” that resembled lint coming from her pores (she used a heating pad to draw it out). At that point, White says, she thought this discharge was hair or fiber from clothes and only mentioned it to her doctors in passing. More worrisome to her were the knotty lumps that had formed under her scalp. When she pressed on them, they seemed to be filled with tangles, as though her hair were growing inward instead of out; she sometimes had the sensation of hair rotating in its follicle. One night, in a fit of rage and fear, she chopped it off at the scalp. When she bathed, she says, black specks and white crystals emerged from her skin.

Desperate, White found a dermatology practice with a physician’s assistant who had heard similar stories from other patients. The physician’s assistant (who spoke to SELF but asked not to be named for fear that her office would become ground zero for Morgellons sufferers who have nowhere else to go) had started out assuming the patients had delusional parasitosis, a recognized psychiatric disorder in which people imagine they are infested with parasites. But their stories were so vivid and similar that she began to wonder whether they had something different, perhaps some kind of an infection. She did a skin biopsy to rule out discoid lupus erythematosus, an autoimmune condition that may make skin react to sunlight and form scars. Then, in July, the physician’s assistant prescribed White a psychiatric drug, pimozide, that affects the action of several brain chemicals and reduces the sensation of itching. The drug didn’t help, but something else did: She also gave White the address of the Morgellons Research Foundation Web site. 

The group looked reliable to White. It has eight M.D.s and seven Ph.D.s among its board members, and its founders had published an article introducing the concept of Morgellons in the American Journal of Clinical Dermatology. More compelling were the accounts by self-described patients at the Web site. They told of rashes, weird hairs or fibers, itches, mysterious splinters — and of lives ruined: relatives who didn’t believe them, jobs forfeited, savings depleted by medical visits, and doctors who insisted that the illness was all in their head.

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That Web site and others provided White with validation — “very nice people who helped me a lot,” she says — and hope for treatment. Many people who posted said they were being treated for Lyme disease, an illness transmitted by infected ticks. Lyme causes different symptoms from Morgellons, but some found the high doses of antibiotics they were taking had eased their Morgellons. White initially tested negative for Lyme but then tested positive for antibodies to the Lyme bacterium. Her neurologist stuck an intravenous line of antibiotics into her arm.

After five months on the drugs, her anxiety and insomnia improved, as did her swollen glands and rashes. But she was not recovered. “I have lots of Morgellons-specific symptoms that I don’t think are going to fade even with the Lyme treatment,” she says. She still has nodules on her head and the sense of tangles under her scalp, the hair twisting in the follicle. “I don’t know what medicine is powerful enough to make it stop.”

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