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BY KERI BRENNER | THE OLYMPIAN • Published July 21, 2008
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Two years ago, Inez Williamson became part of a mysterious, frightening science fiction-like nightmare being played out on her body.
Without warning, itching and stinging sores erupted on her eyelids and scalp. Red welts appeared on her arms.
Each of the sores or lesions displayed a common horror: tiny multi-colored or white fibers were growing out of each one, like deformed tendrils or discolored dental floss. As the fibers came out, they burned as if tiny insects were biting savagely.
"It reminds me what it would be like if you rolled around in fiberglass," said Williamson, 47, an Olympia resident who moved here from New York City. "Around the time of my (menstrual) period, it's unbearable. I lose a lot of sleep."
Williamson is one of an estimated 10,000 people nationally with Morgellons disease, a baffling and debilitating condition now being studied by the U.S. Centers for Disease Control and Prevention in partnership with Kaiser Permanente Northern California.
According to the Pennsylvania-based nonprofit Morgellons Research Foundation, Washington state has more than 200 individuals or families registered as having at least one family member with the disease. The highest concentration of Morgellons cases are in California, Texas and Florida, the foundation says.
In addition to the red sores and stinging fibers of unknown origin and composition, other sufferers report black speck-like material on or beneath the skin. Some people also have systemic reactions, such as fatigue, mental confusion, short-term memory loss and joint pain.
"It really affects my energy," Williamson said.
Williamson says she is at a loss as to where to go for help. A former social worker now on Medicare disability for a back injury, Williamson said she went to an urgent care walk-in clinic in Thurston County. Staff there gave her anti-fungal drugs and told her to go home.
"They really wanted to get me out of there," she said. "At first they didn't believe me, and they didn't want to touch me."
At a low-income clinic, Williamson said staff gave her other drugs that didn't help. Ditto for a hospital emergency room.
She said she has tried some remedies, such as a colloidal silver product, with little success.
"What's scary is that they don't know how contagious it is," Williamson said. "I have a partner, and we talk about it a lot, but I'm more concerned for him than he is for himself."
Until recently, when the CDC's new focus gave the disease more credibility, most doctors didn't believe it was real. Some accused Morgellons patients of picking at their own skin to cause the problem, or making it up and making it worse through psychological problems.
No one knows what causes it, or even what exactly the fibers are made of.
Some researchers, such as Dr. Hildegarde Staninger of Integrative Health Systems in Los Angeles, say the fibers seem to be caused by a nano-sized foreign invader composed of a virus-like organism swimming in a sea of manmade materials such as silicone or polyurethane.
"It is silent, smart, glistening, powered by its own battery," Staninger said in a 2007 report presented at the National Registry of Environmental Professionals conference in Texas. "And when it strikes its victim, it feels like a piece of burning broken glass as it pierces the skin."
Staninger suspects environmental pollutants or allergens could be at work.
Williamson, who has registered with the Morgellons Research Foundation, said she believes heavy mold exposure when she lived in New York might have played a part. According to the Morgellons Research Foundation, the disease does run in families, so it is possible that it is contagious.
Anne Norskog, a member of The Olympian's reader network, said the number of mysterious diseases of all kinds appears to be growing as environmental toxins multiply.
"There are a whole lot of things out in this world that remain unexplained by the 'experts,' " said Norskog, a former medical transcriptionist who has multiple sclerosis. She cited a host of environmental allergens as potential causes, includign "detergents, shaving creams, dryer sheets, air fresheners, fireplace smoke, tobacco smoke, car exhaust, mold, shampoos, creme rinse conditioners" and other manmade products. In addition, animals and insects, inks, dust mites and paper fibers are suspect, she said.
"Our skins are under assault 24/7," Norskog said.
Williamson, meanwhile, said she hides the sores on her scalp with her long hair, and wears long-sleeved shirts to cover her arms. Since she does not have large red welts on her face like some other sufferers, she is able to be in public without enduring stares or revulsion from others.
Williamson said she feels discouraged that there is no help available in South Sound, but is buoyed somewhat by the serious research in California. A recent "Dr. Phil" episode featured the disease, and other media reports are increasing as medical experts start to take it seriously.
In addition, numerous Web sites have been set up to offer chat rooms, advice on treatments, and support.
"I'm hopeful that in a couple of years they'll have a better idea," Williamson said. "Now, I don't feel there is anyone willing to treat me who is accessible." resources on the web
* From the column 'Your Alternatives' by Keri Brenner (weblink) * Dr. Hildegarde Staninger, industrial toxicologist, Integrative Health Systems in Los Angeles (weblink) * Morgellons Sanctum (weblink) * Morgellons Research Foundation (weblink)
From a spokesperson for the Federal Dept of Health The conclusive finding of the bacterial species that could cause a Lyme Disease-like syndrome in Australia has yet to be made. Such a finding would put beyond doubt the existence of Lyme Disease, or a Lyme disease-like syndrome in Australia. In the meantime, laboratory tests are used to see if patients are showing an immune response to the bacteria that could cause this infection. There are different approaches used by different laboratories in this process which leads to different diagnoses for the same patients. We are working to see if these approaches can be harmonised. While the diagnostic uncertainty across the medical community is not ideal, the continued search for evidence for a causative organism is the only way that this uncertainty can be resolved. In the meantime doctors must always use their best clinical judgement as to the cause of any illness their patients may be experiencing and act accordingly. We have received 24 submissions regarding the "Scoping Study to develop a research project(s) to investigate the presence or absence of Lyme Disease in Australia" along with eight expressions of support for the Lyme Disease Association of Australia's submission and four letters from people describing their personal situations. The Study (available at www.health.gov.au/lyme-disease) was undertaken because there is so much debate regarding the presence of a Lyme disease-like syndrome in Australia. Certainly there are quite a number of people in Australia who have been diagnosed with the disease by their treating doctors. Some of these patients have been ill for a long period of time and their therapy is complex and demanding. It is important for these people in particular that we find out as much about the disease as we can. The submissions on the Scoping Study were discussed with the Chief Medical Officer's Clinical Advisory Committee on Lyme Disease in July 2014. The committee of representatives drawn from a range of professional organisations and advocacy groups met for the last time on 15 July. While the committee has been dissolved, the members will still be consulted regularly by the department as it continues its work to progress the former committee's terms of reference. The department's interest in an Australian Lyme disease-like syndrome will be maintained. The Department of Health will continue to: • consult with members who made up the CACLD • monitor progress made in research, for example, the department continues to seek updates on the work currently funded by 1. the Australian Research Council and being carried out by Murdoch University which involves dogs as sentinels and is also looking at human specimens and 2. the University of Sydney's Tick Borne Diseases Unit. • act as a point of contact within Australian Government for the Lyme disease community including medical practitioners and state and territory health authorities • work on the diagnostic pathway with relevant stakeholders (including laboratory collaboration) and will inform patient groups of progress • seek advice from international partners, and • write to patient groups and medical practitioners to update them on Lyme disease progress. www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/health-media-statement.pdf
“We can know only that we know nothing. And that is the highest degree of human wisdom.”
― Leo Tolstoy, War and Peace
Post by itchin4answers on Nov 7, 2014 7:31:30 GMT -5
Aug. 9, 2006
Page 2 of 2
"He very simply said 'bugs,' and he pointed to his lips," says Leitao.
Leitao never expected to find herself at the center of a medical storm. But when her son complained about that strange sore, the biologist, who once ran the electron microscope at Massachusetts General Hospital in Boston, did what any scientist would do. She took a closer look.
"What I saw were bundles of fibers, balls of fibers," Leitao says. "There was red and blue." Even stranger, they glowed under ultraviolet light.
Armed with research, Leitao took her son to a doctor at one of the country's leading hospitals. He dismissed her tale of fibers and wrote to her pediatrician, saying that her son needed Vaseline for his lips and that his mother needed a thorough psychiatric evaluation.
Undaunted, Leitao began poring through the medical literature looking for clues. What she discovered was a 17th-century reference to a strange disease with "harsh hairs" called "Morgellons."
She named the strange fibers Morgellons disease and put the information on a Web site, Morgellons.org. Since then, more than 4,500 people have contacted Leitao, claiming they have Morgellons-type symptoms. The name has stuck, and the disease was featured on the television show "ER."
But do these fibers grow from inside the body -- as Morgellons patients believe -- or do they come from the external environment -- a kind of lint -- as the medical skeptics say?
Searching for an Answer
Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue says.
He thinks the skeptics are wrong. "This isn't lint. This is not a commercial fiber. It's not."
The lab's director, Mark Boese, says the fibers are "consistent with something that the body may be producing." He adds, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
While they wait for evidence that they hope will convince the medical community to take them seriously, some Morgellons sufferers wear pink bracelets that say, simply, "Fortitude."
Dill says she looks at pictures of her family from just four years ago and finds them unrecognizable. "My kids have to see not only their dad but their mom disintegrating, and that's gotta be really scary." abcnews.go.com/Primetime/story?id=2283503&page=2
“We can know only that we know nothing. And that is the highest degree of human wisdom.”
― Leo Tolstoy, War and Peace
lydski: Check you messages Carla
Oct 28, 2020 15:47:37 GMT -5
LIL debbs: Hi I'm new have a ton of questions as to a board I my be exact like what she said but now can't find it
Oct 28, 2020 23:48:05 GMT -5
Oct 29, 2020 18:44:22 GMT -5
GUEST-333: @pipster Vit-C is now made from GMO MOLD. Yes, EMF waves from all sorts of devices across the frequency bands are playing havoc on the immune system. Additionally, the zinc people are taking is INDUSTRIAL WASTE in supplements. Zinc glycinate is the good
Nov 24, 2020 21:04:31 GMT -5
Dr. John Ure: :)Hello, I have treated Morgellans patients in the past and continue to provide education as to just what is going on. I was trained as a lab technician in the US Army when I was a combat medic. I am currently looking at all specimens that I can.
Dec 11, 2020 18:06:23 GMT -5
Dr. Ure John D.: My web site is downtoearthmedicine.org It will give all contact information. I wish to help those in need.
Dec 11, 2020 18:11:41 GMT -5
lydski: Hello Dr. Ure, I will go to your website
Dec 14, 2020 3:33:22 GMT -5
Help!! : I feel like my hair isn't my hair... I spend about 3 hours a day on average on hygiene, trying all kinds of turmeric coconut oils and fungus killing bar soap. It seems to work at the moment and grainy puss like substance will come out of my pores, and I
Jan 14, 2021 12:02:36 GMT -5
Help!! : After those grains come out of my pores my skin will have hard grass trying to come out of these tunnels under my skin. I thought scabies but no medicine works
Jan 14, 2021 12:07:03 GMT -5
Help!! : Now I have two kinds of fibers that I question
Jan 14, 2021 12:07:30 GMT -5
Help!! : Long course hair from scalp that try to adhere to my face and mouth, other light and small fiber that will be flush against my skin with points that cause a sore where it "plants" or bugs in and then..
Jan 14, 2021 12:09:20 GMT -5
Help!! : Digs *
Jan 14, 2021 12:09:33 GMT -5
Help!! : And than it will continue on my body like a strawberry vine.
Jan 14, 2021 12:10:30 GMT -5
Help!! : I don't know but when I pluck a hair under armpits I see my hair and then at the end like a puff of something light and airy. Like mold.
Jan 14, 2021 12:11:53 GMT -5
Help!! : My husband thinks I'm going insane and I can't gather the confidence to ask my doctor
Jan 14, 2021 12:13:38 GMT -5
Help!! : I don't want my situation to be disregarded and I question my sanity from than on.
Jan 14, 2021 12:14:11 GMT -5
Amanda43695: I aslo recently pulled something from my nose that was attached to one of the hairs and there was also a similar "puff" or fuzz on the end where the follicle would be. I came across this board because I have recently started using Hibiclens as my soap/sham
Jan 26, 2021 15:10:24 GMT -5
Amanda43695: After washing my hands with it under warm water I applied food grade 3% hydrogen peroxide. I then rinsed my sink with a bleach cleaner and I noticed anywhere the bleach touched my skin it turned a RED-ORANGE! I found this to be intriguing especially since
Jan 26, 2021 15:12:04 GMT -5
Amanda43695: the only thing i have found to kill any specimens i have recovered is bleach. I believe these things have a protective coating that the Chlorhexidine Gluconate (Hibicleanse) breaks down and then the hydrogen peroxide brings them up to the surface where the
Jan 26, 2021 15:14:05 GMT -5
Amanda43695: bleach was able to kill them. I have also noticed after I showered using the Hibiclens and spray the entire area down with bleach when I am done certain areas turn that exact orange color....
Jan 26, 2021 15:15:03 GMT -5