Posted on 05/19/2006 3:46:43 PM PDT by BurbankKarl
Moregellons Makes Your Skin Crawl With Threadlike Strings Coming Out Of Sores (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.
The SF reference is incorrect. She practices in Austin.
Morgellons: Controversial disease doctors refuse to treat
09:23 AM CDT on Tuesday, May 9, 2006
By Janice Williamson / KHOU
Click to watch video
Imagine being so sick you’re unable to work, but can’t find a doctor who will help you.
KHOU-TV
Mainstream medical professionals don't believe Morgellons is real.
KHOU discovered that is exactly what is happening to a growing number of people in Texas, Florida and California.
Morgellons disease is an illness first documented more than 300 years ago, yet it is still considered a mystery.
Cheryall Spiller moves slower than she once did around her Rosharon farm. The 59-year-old suffers from what she believes is a mystery disease.
“Small white worms that come out of my ears, you can feel them itching in there. You can get a Q-tip and dig them out,” she explained.
Spiller is not alone.
“The sores come up and these fuzzy things come out,” said Stephanie Bailey, Austin resident. “It’s almost like spores or something like that.”
Lesions and scars cover Stephanie Bailey’s arms and legs.
Travis Wilson is a victim too.
“Feeling like bugs are crawling all over you. You can’t sleep. It’s freaky. So he’d go days without sleep,” said Lisa Wilson, patient’s mother.
According to nurse practitioner Ginger Savely, all three may have an emerging sickness called Morgellons disease.
“it just looks you know like somebody picked at something and it got a little infected,” Savely said.
When magnified 60 times the sores take on a different look.
“So you focus a little more you can see the black fibers the white fibers,” Savely said.
Savely admitted the idea of creatures living inside our bodies seems more like science fiction than science.
“I don’t think a person can believe it until they see it with their own eyes,” she said. “The problem is people aren’t looking hard enough, most practitioners are not looking because they are not taking them seriously.”
Mainstream medical professionals don’t believe Morgellons is real.
“I think if we look at what is truly evidence-based medicine, what has been proven based on scientific fact we know we don’t have a means to substantiate her observations,” said Dr. Adelaide Hebert, U.T. Health Science Center Houston.
Dr. Adelaide Hebert said Morgellons exists only in the patient’s mind.
“Many of these patients do have delusion of parasitosis,” Dr. Hebert said. “It is actually not uncommon to have patients come in and describe the sensation that something is crawling on their skin.”
11 News could not locate any Houston doctor who believes in or treats Morgellons. At Oklahoma State University research is underway on a volunteer basis.
Ginger Savely has documented 100 cases and treats her patients with oral and topical antibiotics.
“They can’t get anybody to help them in the medical profession. It’s just a nightmare, a living nightmare. I can’t imagine any worse disease,” she said.
Lisa Wilson’s son became so distraught about his condition he took his own life two weeks ago.
“He would tell me he’d rather have cancer because then he’d know what he was up against,” Lisa Wilson said.
“They’re worried about the bird flu coming, you’ve got something here right now that’s spreadable and it’s being hush-hushed,” Spiller said.
“They told me I was doing it to myself and that I was nuts,” Bailey explained. “I stopped going to doctors because I was afraid they were going to lock me up.”
The scars are more than skin deep.
I've read some accounts of Morgellans which indicate that the threads flouresce under black light, which would seem to disqualify natural hair growth.
The first time I read about this, I thought about having worked construction during my summers in high school and installing fiberglass insulation on hot summer days. Regardless of the precautions you take, it's virtually inevitable that some of the fibers will find their way into your dilated pores and for me, anyways, produced the 'bug-crawling' sensation. It could be any number of things, but my inclination is to believe that all the smoke is indicative of some type of fire. My money is either on some type of synthetic fiber which produces an allergic type reaction or some heretofore unidentified mite or like organism.
As a side note, I thought that I'd been bitten or stung by just about everything that bites or stings in North America, less black widows, bears, rattlers and coral snakes (yep, I've got the brown recluse and copperhead credentials, fire ants, fleas, chiggers, ticks, wasps, hornets, bees, dogs, ferrets, small alligators, a snapping turtle, gar and muskellunge.) This week something nailed me on the web between my fourth and social fingers. It initially looked like a chigger bite and formed the characteristic nodule. In my past experience with them they occurred in bunches and this time there was only one. With no woman in my life these days, I'm kind of short on nail polish at home so I laid some superglue over it which reduced the itch, but unlike the welts I've had from chiggers in the past which hardened and shrank away, this one became increasingly tender and after a few days, I lanced it and drained som thick pus...It appears to have a normal scab now and is painless....I'd be interested if anyone has any idea what kind of bug hit me.....
Those are good points, Pete and Metmom. Pete, they're comparing the catastrophic fatigue from Morgellons to Lyme Disease. The fact that it's a rare disease, mostly found in California, Texas and Florida is good. However, Morgellons disease' rarity does not prove naysayers' contentions that it is a psychosomatic, hysterical illness.
Fortunately there's at least one person performing medical research on Morgellons disease.
Oklahoma State University Center for Health Sciences
Morgellons Disease
"Randy S. Wymore, Ph.D., assistant professor of pharmacology and physiology has taken on the research challenge as volunteer director of research for the Morgellons Research Foundation.Oklahoma State University Morgellons Research
'Health care providers are shooting in the dark as to how to treat it. Antibiotics seem to help some, but if they are stopped the symptoms come back,' Wymore says.
In coordinating research efforts, he sees a research challenge and a chance to help.
'I am doing this partly from scientific curiosity, but also with real empathy toward sufferers.'"
A Times UK article today quotes Dr. Wymore:
"At the moment I'm leaning towards the possibility that some kind of neurotoxin may be involved in this," he said.Times Online UK
"There's clearly something going on. These people are not imagining this."
Well, he hasn't even got the name right, or about anything else for that matter.
Stenotrophomonas (Pseudomonas) maltophilia is ubiquitous, and hardly the cause of the described condition.
Background: Stenotrophomonas (Pseudomonas) maltophilia is an aerobic gram-negative bacillus that is an infrequent pathogen in humans and is found in a variety of aquatic environments. S maltophilia is an organism of low virulence and is a frequent colonizer of fluids used in the hospital setting, ie, irrigation solutions and intravenous (IV) fluids, and of patient secretions, ie, respiratory secretions, urine, or wound exudates. S maltophilia usually must bypass normal host defenses to cause human infection. For example, if fluid in an irrigation solution becomes colonized with this organism, irrigating an open wound can cause colonization or infection of the wound. S maltophilia usually is not capable of causing disease in healthy hosts without the assistance of invasive medical devices that bypass normal host defenses.
Pathophysiology: S maltophilia has few pathogenic mechanisms and, for this reason, predominantly results in colonization rather than infection. If infection does occur, invasive medical devices usually are the vehicles by which the organism bypasses normal host defenses. Otherwise, the pathophysiology of this nonfermentative aerobic gram-negative bacillus is not different from other nonfermentative aerobic organisms.
I gotta guess illegals. The spot below San Francisco, if that is indeed where it is, is not Silicon Valley proper but more like Salinas, which is much more like Mexico than it is like the United States. Lots of agriculture -- strawberries, artichokes, garlic -- and much of it hand-picked rather than machine-picked. You know the rest.
I'm only surprised that there isn't another big pustule east of there closer to the middle of the state where the really big agriculture happens.
The fact that there is some improvement with antibiotics would suggest a bacterial infection. Since it does not eliminate the problem perhaps this infection is secondary to the real cause.
Perhaps this is a fungal or parasitic disease that reduces the immune response or provides a particular bacterial with some substance that allows it to infect the patient.
Interesting comments, Robert.
The Annals of Medical History, n.s., VII (1935), 467-479, mention the existence of Morgellons disease in the 1600s on the European continent:
SIR THOMAS BROWNE AND THE DISEASE CALLED THE MORGELLONS
By C.E. KELLETT, M.D., M.R.C.P.
NEWCASTLE-ON-TYNE, ENGLAND
A note to Sir Thomas Browne's "Letter to a Friend"
"...Hairs which have most amused me have not been in the face or head, but on the Back, and not in Men but Children, as I long ago observed in that endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh Hairs on their Backs, which takes off the unquiet symptoms of the Disease, and delivers them from Coughs and Convulsions."SIR THOMAS BROWNE AND THE DISEASE CALLED THE MORGELLONS
Of course they're not imagining it, it's a psychological disorder. My grandmother had it for a time. In her case it was a reaction to medication. This is just delusional parasitosis masquarading as a new disease.
Sir Gawain wrote: "Of course they're not imagining it, it's a psychological disorder..."
Perhaps you have confused me with someone else. I did not make the statement claiming that Morgellons disease is a case of patients' imaginations.
Sir Gawain wrote: "...My grandmother had it for a time. In her case it was a reaction to medication..."
It's good to hear that your Grandmother's physician discovered the source of her malady.
Sir Gawain wrote: "...This is just delusional parasitosis masquarading as a new disease."
Do you have links to an abstract or full text article citing the research where that claim is made?
If so, perhaps you'd better point the researchers in the direction of the Annals of Medical History where the existence of Morgellons disease was discussed in the 1600s on the European continent.
SIR THOMAS BROWNE AND THE DISEASE CALLED THE MORGELLONS
ping
I'm gunna hurl...thx
According to this article she moved from Texas to CA. Really makes you wonder though- does this mystery ailment follow her around?
http://www.statesman.com/news/content/news/stories/local/03/30LYME.html
See post 53.
Tammy8 wrote: "According to this article she moved from Texas to CA. Really makes you wonder though- does this mystery ailment follow her around?"
Just about anything is possible, I suppose, but are you also willing to conclude that Morgellons disease followed her via time travel to Europe in the 1600s?
Thanks. That's what happens when you follow google to an unknown site.
But I've always wondered why people would want to drink French bottled water, which was what caught my eye.
Didn't that happen to Rosie Greer?
The only proof we have from that time is a description, there is no way to know if it is the same thing. I have read descriptions of illnesses in a PDR and yet many times the illness isn't that at all, just something that sounds the same. I am not a Dr and don't even pretend to know anything about this one way or another. I just think it is odd that this lady is linked to it in 2 states now and she is not a Dr either- she is a nurse practitioner. It may be a real ailment that is being blown off by Drs, but it could also be that this lady is looking to promote this for whatever reason.
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