Morgellons Disease; Where is the Research? Where is the CDC?

Before It’s News – by Danser

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.                     Dr. Wymore searching for fibers

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.’”

This is a true mystery

 “It’s unnerving to know more about your condition than your doctor,” White says. 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 non-mainstream 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.”

So far, Morgellons has two strikes against its being recognized as a distinct disease:

Hundreds of conditions share many of its symptoms, and no one can imagine what would make specks and fibers emerge from intact skin. What little has been written about it in the medical literature essentially says that Morgellons is delusional parasitosis, in which disruptions in brain chemistry cause the unshakable belief that organisms are digging into and sprouting from the skin. The itching and crawling sensations, the papers say, are the effect of neurons misfiring. The rashes are the result of patients obsessively scratching.                   collumbola springtails are often blamed for Morgellons

And the fibers areenvironmental contaminants — pet hair, clothing fluff, fragments of dead insects—that collect on their sticky, self-inflicted wounds. In other words, it’s all in the patient’s head. Nevertheless, the authors say, doctors shouldn’t scold or correct patients who claim to have contracted Morgellons. Instead, they should establish rapport, so as to get the sufferers on the right psychiatric drugs. [they do not work]

Patients, naturally, feel patronized.

Typical Morgellons lesions

With medical opinion so uniformly against them, they made their own Morgellons community on the Internet. There are two major organizations, the Morgellons Research Foundation and the Charles E. Holman Foundation, as well as 720 videos on YouTube and 20 groups on Yahoo! where people compare symptoms and discuss such topics as trying veterinary drugs as remedies. The online presence brings sufferers individual comfort and group power: The MRF claimed the CDC began investigating the syndrome in part because it was prompted by “more than 40 members of Congress” responding to its members’ letters.

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. [two years later, they are still no published results] 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.”

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One thought on “Morgellons Disease; Where is the Research? Where is the CDC?

  1. I have suffered from this disease since 1995. I am an EMT. Every day Is a struggle. I would never take my own life. But it’s to the point I don’t care what happens . I work and it’s hard to focus and get through the day. The pain is horrible. I don’t discuss it with any one anymore. As I sit writing this my skin is burning feels like something Is biting me. Doctors tell you your crazy. My heart goes out to all of you. Suffering from morgellons symptoms. What you are expierencing is real.

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