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No Cause. No Cure. No Joke?

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e entirely. Especially when she instinctively brushed it with her left hand while driving, and was horrified by what happened next.

“It ate away to the bone!” she exclaimed.

A litany of neurological problems soon followed — twitches, cramps, numbness, seizures. While driving, the sight of a passing train caused her to pass out.

Memory was another issue. Working in railway project management, Marsh often had to give presentations. But whereas she thought she was talking about “pipelines” and “imminent domain,” everyone in the room heard her say words like “bananas,” “parrots” and “mangoes.”

Total paralysis set in for the better part of six months. When her vision degenerated in three weeks, Marsh called her optometrist.

“Kate,” she said. “I can’t see with these new bifocals.”

“Maybe you have astigmatism,” Kate replied.

“You don’t get astigmatism at age 44.”

“You’re right,” said Kate. “Maybe something’s wrong with my machine.”

Kate checked.

“Nothing’s wrong,” she told Marsh. “You need to see a neurologist immediately.”

Marsh knew something was wrong with her. But her suspicions were confirmed when seed-like things started emerging from her eyes. And then there was the day when she coughed up what looked like a hair ball.

“What is this stuff?” she said, staring at a mass of fibers in her hand. “I’m not a cat!”

2002, Oklahoma City

As she often did, civil litigation attorney Karen Faulk was working in her sister’s yard, raking leaves, when she felt something bite her. She didn’t think much about it until her hair started falling out and a rash appeared on her chest.

Then came trembling, fatigue, weight loss and itchiness around her feet and ankles which, at the time, she attributed to chiggers. But then her brother came down with the same thing.

He consulted a dermatologist, who told him, “It’s a parasite, like body lice,” but after treatment for such didn’t work out, he conducted a little Internet research.

What he found was a mysterious, controversial affliction known as Morgellons.

It was the lesions that freaked out Faulk the most.

“I don’t even know what to think,” she told herself. “I’m dumbfounded. I hesitate to tell anyone because I sound like a whack job and feel like a leper.”

Her main concern was giving it to someone else, so she secluded herself and rarely ventured from her home.

April 2003, Northeast Texas

By now, Marsh suffered complete bowel stoppage. The former type-A multitasker was forced literally to crawl on the floor to do her job. Her boss intervened.

“Karen,” he told her, “you need to take two weeks off and rest.”

“I will, but I can tell you two weeks isn’t going to do it,” she responded. “Something is terribly wrong with me. I quit.”

Spring 2005, Tulsa

At the Oklahoma State University Center for Health Sciences, Randy Wymore, who holds a doctorate, sat at his computer, researching muscle fibers. His search terms brought up links to Web sites of an unusual phenomenon dubbed “Morgellons.”

Curious, he clicked. As an assistant professor of pharmacology, he thought, “If there’s some interesting new disease, I can pass that information on to my students.”

Interesting was an understatement as he read about thin fibers — black, red, blue, even translucent — coming out of people’s skin. Some even had photographs. He read. And read some more. In addition to the fibers, these people experienced numerous lesions, muscle weakness, chronic fatigue, memory loss and other debilitating symptoms.

“This cannot possibly be real,” he said. “Impossible.”

Over the weekend, he couldn’t kick what he had seen, so Monday, he decided to dig deeper.

“These people seem believable, but what they are saying is so unbelievable,” he said to himself. “Maybe this is a subset of delusions of parasites, but this is not about patients bringing in a bag of earthworms and claiming they crawled out of their ears.”

At the Morgellons Research Foundation on www.morgellons.org, Wymore was encouraged to find several physicians and nurses associated, which suggested credibility. He fired off an e-mail to them: “I’d like more information. Who is doing your research?”

Their reply: “We don’t have any scientists working on it. Would you like to?”

One week later, Tulsa

Over the next week, packages from all across the United States arrived at Wymore’s door, containing samples of fibers that purportedly had been removed from the skin of Morgellons sufferers. As a DNA researcher, Wymore didn’t even have a decent microscope to view them.

Once he borrowed one, he began to look.

“Wow, they do look like textile fibers,” was his first thought. “Not that I really know what textile fibers look like. Maybe I should get some and compare them.”

Thus began an impromptu collection of clothing fuzz and dust bunnies from underneath the beds at home. When he compared them microscopically, he said, “None of these look anything like what I saw from those patients, but the samples from patients all over the country look like one another.”

Word had leaked that a medical school professor at OSU was looking into Morgellons, a condition generally scoffed at by the physician population. Wymore even got a phone call from a dermatologist.

“You’re not doing these people any favors,” the dermatologist told him.

“Those fibers are just clothing lint. You’re just feeding their delusions.”

“Well, why is it that the fuzz and fibers I’m collecting don’t look anything like the fibers they’re sending me?” Wymore countered.

“Obviously you’re not shopping at the same Wal-Mart they are.”

Determined to prove the dermatologist wrong, Wymore visited every department store he could — Wal-Mart, Sears, Dillard’s, JC Penney, even the Salvation Army. Armed with tiny pieces of Scotch tape, he grabbed fibers from sweaters and jeans and other articles of clothing.

On his way to California and back for a conference, he stopped in Texas, New Mexico and Arizona to collect carpet fuzz from hotel rooms, fur from a variety of animals. Nothing matched.

Thought Wymore, “Now I’m fairly convinced something odd is going on. I can’t explain what patients are sending me as simple environmental contaminants.”

Many other physicians weren’t swayed. “You’re jeopardizing your credibility as a researcher by looking into this utter nonsense,” one said.

June 2005, Tahlequah

Having moved to another state did little to relieve Marsh’s suffering. At one point, she went to the emergency room, her body covered in lesions. The doctor walked in and went white.

Thought Marsh, “I can see fear in his eyes.”

He backed up, gloved up and masked up before returning. Through shakes and sweat, he told her, “I used to be a VA doctor. I saw this every day with Gulf War victims.”

Feb. 23, 2006, Tulsa

At no charge to the patients, OSUCHS had approximately a dozen children and adults with Morgellons visit for examinations. Half a mile down the road, the facility’s telemedicine center houses a dermatascope — a powerful tool used to examine living tissue — hooked directly into a high-definition, large-screen television.

It took less than a minute to find fibers poking out of the first patient’s skin — sometimes from within scabs and lesions, sometimes from completely unbroken skin — the largest about the size of an eyebrow hair.

“That’s really disturbing,” thought Wymore, further bothered by these people having been to as many as 15 physicians who flat out had refused even to look at their skin.

Under the microscope, what looked like one fiber to the naked eye proved to be a mass of them.

“Unbelievable,” he said.

Wymore later called in a histologist on staff at OSUCHS and told him, “I want to eliminate the possibility of weird nerves, blood vessels, hair — anything we could be misinterpreting.”

After spending quite a bit of time looking at the evidence, the histologist shook his head. “These are definitely not any of the normal biological sorts of things you’d expect to find inside the human body,” he said. “In fact, I’ve never ever seen anything like this.”

At that moment, Wymore told himself, “I’ve gone from ‘this is impossible’ to ‘there is no possibility this is not a real physical disease.’ This is now beyond all shadow of a doubt.”

Summer 2006, Tulsa

With a genuine mystery on his hands, Wymore turned to the crime lab of the Tulsa Police Department for help. He and others from OSUCHS watched as two forensic scientists conducted studies in their crime lab.

Within the first 30 seconds, one of the scientists said, “We can rule out rayon, nylon, Dacron, polyester and all synthetic material.” Wymore chuckled to himself, knowing it took him nine months to find what they just had in less than one minute.

The discussion between the forensics continued.

“Maybe it’s dyed cotton.”

“Nope, this is definitely not a textile.”

“This is not like any fiber we’ve ever seen.”

Spectroscopy was performed in an effort to determine the fibers’ chemical composition. The computer compared them against a database of almost 1,000 fibers.

“It didn’t find a match.”

“Run it again, just to make sure it’s working.”

“No match.”

Solvents were administered to extract any dye from the fibers. There was none. The fibers merely floated, with no change of color.

Next, the fibers were placed in a vacuum chamber and heated to determine their boiling point, which also can determine an object’s chemical makeup against a database of around 80,000 organic compounds. The device heated to its maximum temperature of 1,400 degrees F. All it did was blacken the fibers, whereas textiles would have gone up in smoke far earlier.

The forensics shook their heads. “Huh,” they said. “That’s really weird.”

2006

Weird, yes. But is it contagious?

“I have no clue,” Wymore admitted, “but if it is, I don’t think it’s highly contagious, like influenza. If it were, we’d all have it by now. I don’t think people need to be afraid of this thing, but they need to be aware that something unusual is happening.”

Although he never meant to, Wymore finds himself as the nation’s resident go-to expert on the strange syndrome known as Morgellons — named after an unrelated 17th-century malady in which hairs broke out on children’s backs.

Conspiracy theories abound — from whispers of bioterrorism to alien life-forms — but a majority of the debate centers on whether Morgellons is a disease at all, with many claiming it’s all in the heads of the patients. Wymore initially thought that, until he read the stories — and later saw the physical evidence — about children being afflicted.

“You know, a toddler, a preschooler — being delusional just doesn’t seem like a common thing you’d encounter,” he said.

Online, the Morgellons Watch Web site at www.morgellonswatch.wordpress.com looks at Morgellons media coverage from a perspective of doubt. It’s run by a retired computer programmer in Los Angeles named Michael, who preferred his last name not be used, who said he was “surprised” that none of the reports he had read or seen on TV looked at the disease with any skepticism.

“It all seemed very one-sided,” said Michael. “Nobody had really looked at the claims being made with a critical eye. I feel I have a responsibility to seek the truth. I’ve challenged people’s beliefs, which is very hurtful to them. This is not about winning the argument; it’s about arriving at the correct answer.”

Michael said he’s misunderstood by his own critics, who believe he equates Morgellons with mental illness.

“Psychosomatic conditions might play a part for some people, but what surprises me most is the inability of these people to see the huge range of symptoms they have between them. They are all convinced they have the same thing; they just chose this disease and picked symptoms out of the given symptom pool,” he said. “These symptoms can be caused by a wide variety of diseases. There is no delusion there — just an unproven assumption. Some people believe their cotton socks are infecting them with little worms and it’s being covered up by the government. That is a delusion.”

While that list of wide-ranging symptoms would suggest those afflicted can’t all have the same thing, the stories that pour in daily from reliable, professional people nationwide make it tough for Wymore to discount their legitimacy. There’s the pediatrician in Georgia who’s had an unhealed thigh lesion for six years, despite being athletic, fit and otherwise disease-free. Or the author of several books in Washington who struggles with a brain fog that sometimes finds him at his keyboard, not knowing what he’s supposed to do with it.

“The fibers get all the press because they’re the weirdest, but it’s the effect on the nervous system that’s the most severe with these patients. It’s a profoundly life-altering, negative impact,” Wymore said. “I’ve had several of them tell me, ‘Yeah, I’d rather not have the lesions and they itch like crazy, but I could live with that.’ But not being able to continue being a doctor or a teacher or writer because they can’t focus their thoughts, that’s what frightens them.”

Some of the stories are “heart-wrenching,” he said. Parents who have had to give up their children. Breakups, divorces, suicides.

The afflicted express frustration over not being taking seriously by the medical community, locally or nationally. Search for Morgellons at the Centers for Disease Control and Prevention Web site, and nothing turns up.

“Morgellons as it stands doesn’t mean anything scientifically,” said Dan Rutz, CDC spokesman. “It is purely the creation of people who feel they have it. Their definition is hopelessly broad at this point, which doesn’t help clinically.”

Marsh disagrees.

“This is not an Internet illness,” she said. “We found the Internet after the illness found us.”

However, the CDC is doing something about it. Rutz said the group is about to embark on an in-the-field epidemiological study in Southern California. “We hope to get an objective analysis of what this is, starting with a case definition of those who share common symptoms,” he said.

Laurence Burnsed, interim director of the Communicable Disease Division at the Oklahoma State Department of Health, said he’ll be interested to see what the CDC finds.

“There’s not a whole lot known about it yet, whether it’s caused by a specific pathogen or something that’s more of a mental condition, so it’s difficult to say” whether Morgellons may be classified as an actual disease, said Burnsed. “We are not actively involved in any research at this point.”

He said his department doesn’t hear often from Morgellons sufferers, but said “we encourage individuals to seek more input and evaluation from their primary care physician. If you have a concerning condition, we want you to be properly evaluated.”

But part of the problem, according to Marsh, is that most physicians aren’t willing to hear it. She once was referred to a doctor in Muskogee who, golf clubs at the ready, already had a prescription for heavy psychotropics written before he’d even met her.

“He said, ‘I’m not saying you’re crazy, but you’re focused on bugs,’” she recalled. “I had never said anything about bugs. I fell to my knees, crying. I’ve since been fortunate to find compassionate doctors.”

Wymore hopes to have more answers with OSUCHS’ own population study, being headed up by his new graduate student, Melissa Engle, formerly an epidemiologist for Tulsa City-County Health Department. With approximately 5,000 Morgellons sufferers on their nationwide registry, they hope to draw parallels between those affected.

As it stands, Wymore said, Morgellons knows no boundaries among income, education or race. More cases have been recorded in California, Texas and Florida than any other states, but, he said, “then you have the people in Bangor, Maine, who’ve never traveled there. And I don’t know what to think of that.”

Although he believes a cure will be found, Wymore warned “it’s not going to be trivial.”

“Unless we do just get lucky by shooting in the dark, it’s not going to be easy,” he said. “Morally, there’s no way I can get out of this. I’ve got to do something until someone else comes along or we get to the bottom of it.”

Until that day, Marsh said other “Morgys” shouldn’t waste time worrying.

“Put down the microscope and get out there and live your life,” Marsh said. “You’re not going to solve this stuff.”

Admitted Faulk, “It’s easy to be fixated on lesions and looking at things under microscopes, and I did that for a while. But there is a way of getting better; it just takes a lot of time. There is no cure, but it is a constant fight.”

Sept. 18, 2006, Tulsa

The couple had driven seven hours from Texas just for 20 minutes in the OSUCHS lobby with Wymore. She claimed to have had Morgellons for 18 years. The husband thought maybe it had been 19.

“Why did you come here?” he asked. “You know I’m not a physician; I’m a scientist.”

They knew.

“I’ve been to 14 different doctors,” she said. “The last one was a dermatologist who offered to give me a prescription for anti-psychotic medication. When he found out what we wanted to see him about, he wouldn’t do it through insurance, said it had to be cash.”

“And then he refused to look at her skin,” the husband said. “He offered to give me the prescription, too. He said, ‘If you believe her, you’re as delusional as she is.’”

One day later, the incident weighed heavily on Wymore’s mind.

“So they paid $500 out of their own pocket, out of their retirement, to someone who refused to even look at her skin,” he recalled. “And I don’t know, maybe it was worth 14 hours to come to the med school and talk with someone who was willing to listen to what they to say and treat them with a little bit of respect for them as humans, and compassion and dignity, because a huge percentage of this population has definitely not been shown that.”