Posted on 05/19/2006 12:58:10 PM PDT by BenLurkin
CBS) LOS ANGELES It's a "mystery” straight out of the "X-Files."
But those who suffer from it will tell you it's painfully real.
Imagine sweating "beads” of a *black tar- like substance" -- or pulling colored threadlike strings from sores all over your body.
Worst of all... not only are doctors unsure of what it is, many tell patients they're making it all up.
The disease literally makes your skin feel like it's crawling-- but here's the real scary part for us. Out of the entire country, the L.A. area has the highest percentage of cases.
According to some patients: "They start out like little pimples or something and you scratch them, and they bust open and they spring forth these weird fibers like a strand of a piece of cotton. "
"I saw white fiber on my face, I saw black specks coming out of what looked like pimples really. "
It sounds like these people are talking about something out of a science-fiction movie. But they're not-- they're describing the painful symptoms associated with a mysterious skin disease called Morgellons.
Most sufferers have lesions on their skin that ooze multi-colored fibers.
"Blue red yellow pink white coming out of the skin, not landing on it."
Black pepper-like particles are also often found on the skin-- and then there's the bugs.
"The most disturbing symptom is just the crawling feeling on your skin like you got bugs crawling all over you."
“My son felt it first: ‘Mommy I have bugs on my skin.’ I thought he must be having a vivid dream. Then I started having the symptoms.”
This woman-- who only wants to be identified as Marcella, says in addition to the bugs, there's severe pain.
"Yes, tremendous amount of joint pain particularly the large joints. Like the hips and the knees."
These are just a few of the more than 3500 Americans believed to be suffering from the illness. The highest rate is right here in the L.A. area.
"My symptoms started out as small lesions that looked like birth marks, exactly like birthmarks"
William Zielenbach believes he's had the disease for the past two years. Right now he has lesion covering his arms and legs. He lives with his girlfriend, Katherine Walker, in this Hollywood apartment building. She recently came down with it and dropped about 40 pounds in a matter of months. They're now shells of their former selves.
"I was getting little lesions on my ears. Again my case wasn't as bad except for the chronic fatigue, which is how a lot of people say it starts for them."
Another troubling symptom-- hair loss. Annette Riaubia of Harbor City shows us why she has to wear a wig.
"My biggest symptom has been hair loss."
She often get lesions on her scalp.
"They don't actually heal. They just end up leaving strange looking scars."
On top of having to live with this devastating disease-- these people have had to deal with a lack of support from the medical community. Some have been diagnosed with scabies--- a contagious skin disease caused by a mite.
"Doctor diagnosis? Yeah, scabies from about 10 feet away."
Or they're told they’re delusional and that their ailments are from self-mutilation.
"Went to the doctor, went to the dermatologist first and he basically said that I was delusional.
"I’ve had everything from nerves to drug addiction to delusional parasitosis is the biggest common diagnosis.”
The disease does seem to cause a brain fog or lack of clarity. However, this Florida woman wanted to prove to doctors that it wasn't all in her mind so she saved the fibers that were growing out of her body.
"This has absolutely brought me to my knees."
Some doctors even admit to a lack of acknowledgement of the illness.
"A lot of times, not all of us but there are a lot of us who feel like if it doesn't exist in my medical book then it doesn’t' exist anywhere."
"Believe me if I just randomly saw one of these patients in my office, I would think they were crazy, too."
Nurse practitioner Ginger Savely treats Morgellons patients from all over the country at her San Francisco Medical Center.
“But after you've heard the story of over 100 patients and they’re all down to the most minute detail saying the exact same thing, which becomes quite impressive.”
As you can imagine living with such an illness can cause emotional distress. Lisa Wilson’s son, Trevor, developed the disease just over a year ago. At times she'd try to help him alleviate the pain.
"It looked like a piece of spaghetti was sticking out about 1/4 to an 1/8 of an inch. It was sticking out of his chest when having a bad attack. I tried as hard as I could to pull it out."
Trevor tried several medications-- antibiotics, antiparasitics and pain killers-- but when things became too much to bear, he took his own life.
" I knew he was going to kill himself and there was nothing I could do to stop him."
Other Morgellons patients have felt this same type of deep depression. The children have their own struggles:
"I used to have the whole softball team come over. Now no one wants to come over anymore. "
"Every day we just have to think that the end is soon. We just hope it will be over soon."
Researchers at Oklahoma State University Center for Health Sciences have been testing scabs and fibers from patients.
"We don’t' know how to treat it we don't know what causes it. We don't know if it’s an environmental factor, if there are bacteria involved, if there are parasites, or worms or viruses."
Meantime sufferers are praying someone can unlock this medical mystery and release them from this living hell.
"It's just one big Twilight Zone episode that hopefully we get an end here soon!”
Nurse practitioner Savely says she's found some success by giving her patients a combination of anti-fungus, antibiotics and antiparasitics.
Great catch!
You shouldn't...all of the "supposed patients" had a history of lyme disease (from ticks). Actually, either that same nurse makes a long commute between jobs or it has to be a hoax, see post #16.
when I say "the sticks", I mean THE STICKS. Lyme disease has never been a problem here...we have no trees and no large game to speak of. just hundreds of miles of empty, flat, vastness with a few jackrabbits and the occasional rattlesnake.
Ahhhh...I consider where I live "in the sticks" but I live in the Texas Hill Country. Lots of ticks, fire ants and scorpions! We've only seen one rattlesnake in 15 years and my dogs killed it. They also got ahold of skunk and killed it last weekend...yikes!
I'm probably 5 or 6 hours north and west of you.
My favorite movie. 8~)
"My God, I forgot how big you were. Thank you for my life."
Last week KFI's Bill Handel talked about it being in South Texas - no mention of Los Angeles (and you think he would, being in LA!)
In 1976, to Albany International Corporation, Albany, NY, was awarded patent which, among other things, proposed use of various types of micro dispensers for the protection of biologically active agents during their diffusion through atmosphere. Dispensers were made of plastic micro-tubes which protected it's content against UV and oxygene. Patent number is US03994437. It was available at IMB patents site.
Maybe so, but it is a given that both stories cite the same nurse in two different locations, Austin and San Francisco, which makes it very suspect. Looks like they just copied the same story and did a "search and replace" on the location.
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