Whatever Happened To ... the mysterious disease known as Morgellons

Sue Laws thought she had Morgellons, also known as unexplained dermopathy.
Sue Laws thought she had Morgellons, also known as unexplained dermopathy. (Sean McCormick - )
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By Brigid Schulte
Sunday, October 31, 2010

In 2004, Sue Laws began to itch. She found tiny red fibers all over her back. Within weeks, her skin broke out in lesions. She felt bugs crawling under her skin, and one day, she said, she pulled a worm out of her eyeball and coughed up a springtail fly. "That's when I thought, 'I'm really going to kill myself,'" the Gaithersburg resident told The Washington Post Magazine in 2008 in a story about a strange medical condition she thought was Morgellons.

Laws's doctors thought she was delusional. But she found a host of other sufferers on the Internet and joined the Morgellons Research Foundation and the lobbying effort that prompted a number of lawmakers, including then-Sen. Barack Obama, to write the Centers for Disease Control and Prevention demanding an investigation.

Now, nearly three years later, the CDC has completed its investigation of Morgellons, or what it calls unexplained dermopathy, evaluating patients in Northern California and sending tissue samples to the Armed Forces Institute of Pathology for analysis. CDC experts are preparing the final draft of their report, which they hope to submit for publication in a peer-reviewed scientific journal sometime in early 2011.

So, is Morgellons real? Or is it a delusion?

The CDC won't say right now, for fear that releasing information might jeopardize the study's publication. Mark Eberhard, director of the CDC's division of parasitic diseases, said, "We were very clear from the outset that no one study, not even this one, would likely provide the whole answer."

A few years ago, a handful of scientists thought the so-called fiber disease could be the result of infection by some strange new bacterium, parasite or fungus. Almost all of them have dropped their research. "I believe the disease is real. But there are lots of crazy people involved. So, I distanced myself," said Ahmed Kilani, an infectious-disease microbiologist at Clongen Labs in Germantown. Plus, there was no funding.

The sole remaining researcher is Randy Wymore. A pharmacology professor at Oklahoma State University, he has spent the past three years doing "slow and tedious" and ultimately inconclusive DNA testing of the fibers that patients claimed were seeping from their bodies. He has ruled out unusual bacteria, fungi or insects. "We have a better idea of what the fibers aren't," Wymore said. "But we're no closer to figuring out what they are."

Sue Laws received a diagnosis of small-cell lung cancer in 2008. As she underwent chemotherapy, she wrote on an Internet discussion board that when her hair fell out, out, too, came "millions of red, blue, black and clear-white fibers and springtails, spiders, ants, dog scabies, human or dog lice."

By October 2009, the cancer had spread to her brain. She refused further treatment. She died Dec. 13.

Her last wish was that her body be donated to science to help find a cure for Morgellons. But her family couldn't find a researcher who wanted it. Her husband plans to spread her ashes in St. Croix in the spring.

Read the original story: Figments of the Imagination?

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