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08-04-06, 05:07 PM #1katiemh Guest
Morgellons Syndrome, real or delusional? CDC considers TX for study to find out
CDC considers Texas for Morgellons study
07/25/2006 12:50 AM CDT
KENS 5 Eyewitness News
The Centers for Disease Control and Prevention is launching a study of Morgellons disease that may target South Texas where more than 100 people are suffering from the illness.
Cindy Casey suffers from Morgellons. Symptoms of the disease include lesions that leave scars, the sensation of bugs crawling under the skin, and fibers that pop out of the skin.
"Mostly black and white. Some of them were blue, and some of them were red. The whole area gets really sore and you feel some sort of crawling sensation around the lesion," Casey said.
Like others, Casey was diagnosed with delusional parasitosis — delusions of parasites. Most doctors do not recognize Morgellons as a disease.
However, one medical school is taking Morgellons very seriously. Most of the research on Morgellons is being done at Oklahoma State University in Tulsa. Doctors and scientists at OSU said this disease is real, and it's frightening.
"I am 100 percent convinced that Morgellons is a real disease pathology," said Dr. Randy Wymore, an assistant professor of pharmacology and physiology at OSU.
Wymore has spent the past year studying hundreds of fibers from Morgellons patients.
"The samples do look very similar to one another," he said.
Wymore added that the fibers don't look like anything found in textiles. He has also determined that the fibers are not rubbing off from clothing, because doctors at OSU have found the fibers inside the body.
"We were able to observe fibers under completely unbroken skin," he said.
Dr. Rhonda Casey has examined more than 30 Morgellons patients.
"There's no question in my mind that it's a real disease," she said.
Dr. Casey has extracted fibers from under the skin, and examined them under a microscope.
"If it were not for the fibers, the patients would all be taken seriously. So I think even though the fibers may be a key to helping us diagnose this disease, they have also been a hinderance to it even being accepted as a real disease in the past," she said.
Even thought the lesions and fibers are the most visible symptoms, doctors said the more damaging effects of this disease are the nerve and neurological damage, which affects the ability to think and move.
"Trouble concentrating, trouble communicating, and problems thinking of the words you want to say, and how you want to express yourself," patient Cindy Casey said.
However, it is the symptoms that sound like science fiction that make this disease like no other.
"I pulled some fibers out, and I was just taking a look at it, and the fibers just started to move around, kind of around each other," Cindy Casey said. "And I screamed to Charles (my husband), 'Charles, come here and look, because everyone's been telling me I'm crazy. Charles, look at this,' and he looked at it, and yeah, he saw it too."
"This one I didn't want to believe," Charles Casey said.
Incidents like that are just one more bizarre part to this puzzling disease that seems to be spreading.
"There is the slightly frightening component to it that we don't know what causes this. If more and more people are coming down with Morgellons, we need to get a handle on this," Wymore said. "Is there an environmental component that needs to be addressed? Is it contagious? These are all things that we don't know the answer to at this point."
The CDC has formed a task force to investigate Morgellons, and they are launching a study to find out where this condition is most common and who it affects. Texas is one of the states with the most cases per capita, and the epidemiology study may be conducted here.
The CDC has setup an e-mail address for people to ask questions, because of the volume of calls following the reports that aired on KENS 5 in May. That e-mail address is firstname.lastname@example.org.
Itching for Answers to a Mystery Condition
Fed up with doctors calling them delusional, a group suffering from nightmarish symptoms has pressured the CDC to look into their disease
By PAIGE BOWERS/ATLANTA
Posted Friday, Jul. 28, 2006
Dr. Gregory Smith wants people to know it's not all in his head. According to the Gainesville, Ga., pediatrician, white fibers have been burrowing into his skin for the past two years, making him feel like he's under constant bombardment from insects or cactus needles. Shine a black light on these fibers and they'll fluoresce blue, he says, just like something you'd see in The Twilight Zone. He describes looking into the mirror one night, only to see one burrow down into his eye.
"Yes ma'am, I was a little bit distraught," recalls Smith, 58, who says he can no longer work because his mysterious ailment has also robbed him of his memory and neurological function. "I tried to grab a hold of it with tweezers and it would not come out. It was quite painful, so I threw up my hands and went to the Emergency Room with my wife."
For Smith, and some 4,000 people across the nation who claim to suffer from similar symptoms, it's the reaching out that has been problematic. The disease, called Morgellons after a reference in a 1674 medical paper, isn't officially recognized by the medical community. Some have suggested that it is a hoax, even a viral marketing campaign for a sci-fi movie. But sufferers say it's real and that there have been a growing number of cases across the nation of people with these painful fibers, skin lesions, crippling fatigue and memory loss. No one knows what causes Morgellons and no one knows how to cure it.
But Smith and his fellow sufferers are itching for answers. That's why they've pressured the Centers for Disease Control (CDC) to assemble a team of scientists who will determine whether this disease is in fact for real. The 13-member team is expected to share their findings within the next two months. "We're not ready to concede there's a new disease," says CDC spokesman Dan Rutz. "But the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it because they're frustrated that there's been no organized way to deal with their suffering."
But even with CDC involvement, Morgellons sufferers like Smith are still frustrated that they haven't been asked for their input. Smith, for his part, says he has offered to ship his own properly prepared Morgellons specimens to the CDC for review, but claims the agency "blew it off." And the South Carolina-based Morgellons Research Foundation volunteered to share research that an Oklahoma State University professor has done on the disease — some of it suggesting it could be contagious — but they say they were rebuffed as well. The CDC has said that it would conduct its own research first, then vet the findings with outside scientists.
In the meantime, Smith says he's just trying to keep up with the simple things in life. Unable to practice medicine for the past year because of neurological and cognitive problems he believes are a result of the disease, he says he is overwhelmed by mundane tasks like housework or hobbies like working in the yard. "From day to day, I can't predict how I'll feel," he says. "It's understandable why many people are skeptical about this illness. The symptoms are so unusual that they just don't make any sense. I even question my own sanity from time to time. But if this is all psychiatric, please give me something to make it go away." (More at link)
08-04-06, 06:48 PM #2
Hopefully they will find more definitive information about whatever the syndrome really is..it sounds interesting from what I've read.
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