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.
I can imagine that what is happening is that people have this fungus in their mulch around their house. The fungus will shoot it's spore toward a light source, perhaps an open window, and then it may land on a person. You probably wouldnt' notice it much, but it would feel like perhaps bugs crawling on you as it grew. On skin it might appear to be small freckle or blackhead at first but if it grew, it would become fibrous.
A picture of the fungus: 
Another view:
Fungus on siding:
More info:
Another reason to stay out of California.
That's very interesting, however they do say it's not a problem for pets so one would have to assume the spores only survive under certain conditions. I am glad I always use cypress mulch though!
Strange that it should get this much emphasis suddenly.
EntrezMed? Does Ginger Savely practice in France in this version?
I see them all the time in our local natural health food store and also in the natural pet food store. Some just think the MDs are blind and stupid, others believe it is actually a conspiracy, but this is the way they reason, by taking unconnected facts and stringing them all together with no basis for doing so.
The somewhat similar description of some symptoms means absolutely nothing. 17th century reports on diseases are notoriously inaccurate. Even the doctors (let alone the lay people with an interest in medicine) still believed in the four humours and similar balderdash. Harvey's theory of the circulation of the blood wasn't even published until 1628, and nobody gave it any credence for another 50 years or so.
The AMA must have had the references removed overnight.
The clue is the stretching for good stuff -- "Ginger is married to Bill Brands, a UT history professor and Pulitzer prize nominated author of 18 books ..." -- I'm glad she married a nice guy, but what difference does it make to HER accomplishments that he's a prof, let alone that he's been nominated for a Pulitzer (anybody can nominate anybody who's published anything for a Pulitzer)?
Frightening Skin Disease Invades L.A. (Morgellons) Posted by bd476 to JohnBovenmyer; Cacique; BurbankKarl; Mad_Tom_Rackham; metmom; Nihil Obstat; Renegade; ... On News/Activism 05/19/2006 5:50:12 PM MDT · 40 of 128
Testing for Lyme in the later stages is difficult. The testing itself requires considerable skill in the lab doing the testing. It also requires skill and understanding of the doc, who must know what to tests to do. It is complicated.
I 'll also add that a considerable number of docs refuse to treat for Lyme until test results show Lyme. That is too late. By the time their test results are in, the 1st stage is over and damage is being done. The treatment is now much tougher. The reason given for the delay is, "to prevent the proliferation of antibiotic resistant strains of bugs". That's BS, the lesion is proof of a bacterial cause.
Your post says the problem persists. That means the bugs are still present. She should w/o question receive the appropriate antibiotic treatment to get rid of them. If her doc hasn't done this, she absolutely needs a new one. I suggest an immunologist. I haven't gone into details, but they would be the ones most likely to have the knowledge and understanding to determine exactly what's going on. By immunologist, I don't mean one of those allergy morons. If the doc starts testing for allergies, that's the clue the docs NG. He should be testing for things like elevated IgM, and heart, liver and brain problems. A GP could do this, but it's unlikely one would find one that has, or would spend the time to know and understand the important aspects involved.
A number of years have passed 5 at least and I don't remember about the bullseye lesion. She saw a doctor several months (2) later where the test for Lyme was administered and was negative. I remember looking on the Internet and all her symptoms fit Lyme disease( but what do I know I am not a doc). Her doctor treated her with Vioxx (which she was allergic to) and then other meds of the same type, never antibiotics. I remember suggesting she see another doctor but that made her angry at me. Now she lives in Cuernavaca Mex. and a doctor there has given a name to the traveling nerve pain she is experiencing but she couldn't remember what he called it. The doctor she first saw is here in Houston and I doubt if he was very familiar with Lyme disease, you don't hear a lot about it here.Would another blood test show Lyme disease at this late date?
OH NO! Regardless of Vioxx's heart problems, it would make the disease much worse. These anti-inflamatories cut the immune systems attack on the bugs and they proliferate, because of that. In the case of Lyme at that stage the bugs are involved in heart tissue.
"The doctor she first saw is here in Houston"
Lyme is a worldwide disease and being in TX, the moron should know about all the various diseases that she might have had that are made worse by administering such anti-inflamatories. Lyme is definitely present in TX. It's the most common arthropod borne disease. Sudden onset symptoms like this should not be dismissed and the patient given anti-inflamatories.
"Would another blood test show Lyme disease at this late date?"
A good lab would find past exposure. Unless the disease progress to where secondary lesions, meningitis, endocarditis, synovitis, ect., are present, it may not be easy.
" I remember suggesting she see another doctor but that made her angry at me."
Yes, some people trust there docs as if they were all knowing. Few people are familiar with "medicine", so they don't question. They wouldn't understand anyway. Given your description, the MX doc doesn't know either. She should be on antibiotics and have the appropriate tests done by a competent doc.
Your welcome. I sure hope she gets better.
Ping to read later.
Actually Ginger Savely, LLNP was practicing in Austin Texas up until the March 31, 2006.
She has moved her practice and is now practicing with Dr. Stricker, in San Francisco, California. Dr. Stricker is a world reknowned researcher and physician who treats and reseaches Lyme Disease, Chronic-Late Stage Disseminated Lyme Disease, aka Borreliosis, AND Morgellon's Disease.
So, there is no discrepancy here, as you would like to believe, simply that the practitioner's locale has moved.
It was more of a distrust of the media's reporting that drove my comment, also noting very similar wording used in the two articles with the different locations mentioned.
The media gives us little reason to trust it anymore.
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