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

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

Sue Laws thought she had Morgellons, also known as unexplained dermopathy.

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By Brigid Schulte

Sunday, October 31, 2010

http://www.washingtonpost.com/wp-dyn/content/article/2010/10/22/AR2010102205567.\

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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.