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.
Moreover, trying to do diagnostics from the observations of a 17th century Englishman with "interests in medicine" is virtually impossible. (It's a hobby of some doctors with an interest in history, but it's always conjectural, like the speculations that Henry VIII had syphilis and transmitted it to his children.)
The modern syndrome, whatever it is, was simply named after the 1600s disease. Many people assume (and I imagine were intended to assume) that it's the same disease. You're one of them.
I wouldn't trust a 17th century medico to describe anything accurately from a modern standpoint (you should read some of their stuff describing diseases that we know are still extant - like TB. Some of it is very off the wall.)
I saw it. Reporters make mistakes.
Yep. Look at the way they treated Lyme Disease....
Tammy8 wrote: "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."
Tammy it is entirely possible that the nurse practitioner
- Forged the excerpt from the History of Medical Annals and then posted it online. It's also possible that the nurse practitioner is
- Impersonating Randy S. Wymore, Ph.D. assistant professor of pharmacology and physiology at Oklahoma State University Center for Health Sciences, currently doing research on Morgellons disease. It's also possible that the nurse practitioner
- Wrote this today for the Times Online UK, or bribed someone at the Times Online UK to write it. It's also possible that the nurse practitioner
- Paid off the American Journal of Clinical Dermatology to publish the abstract on Morgellons disease. It's also possible that the nurse practitioner
- Bribed the National Institute of Health /Entrez Pub Med to further a hoax.
All is possible, Tammy, and most of the possibilities are dependent upon your willingness to look for a conspiracy around every corner.
Yikes...
My knowledge stems from reading all available research, and not from harboring the assumption of conspiracy reflected in your post.
MEASELS
I want to thank you for giving me my best laugh of the day with this post to me.
1. I admitted to not knowing anything about this one way or the other.
2. I was under the impression we could post our opinions on articles, where do you see a conspiracy theory in my posts? I stated it could be real or not- I don't know.
3. I really don't care.
No conspiracy theory on my part- BTW, do you have some personal interest in this that makes it a hot topic for you or do you just like acting arrogant, or are you baiting me for some reason?? I have not posted one thing as fact on this topic, all just speculation and conversation on my part and I even said it could be real or not- meaning I haven't even decided whether I believe it or not.
In other words- WTF is your problem??
Egad! I think I read a Frank Herbert book on something like that.
Um, I know that. I was responding to the quote in your post.
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.
That's a pretty vague description. I think I'll trust today's doctors for diagnosis instead of someone from the 1600s. BTW, did you happen to read the rest of that article from where you pulled the quote?
Had to look it up:
mycelium
. The vegetative part of a fungus, consisting of a mass of branching, threadlike hyphae.
. A similar mass of fibers formed by certain bacteria.
There is no published research on this. There is a website that collects and reports testimonials and posts irrelevant pics with false, or misleading captions. The abstract link you posted is not to a study, but to a particular practice's opinions on a limited number of their patients. The docs involved failed to ID what actually was wrong with their patients and to characterize the common findings. Note the patients were not diagnosed with Morgellon's disease, because their is no such thing- other than psychosomatic complaint. There are no lesions caused by psychosomatic complaint.
The pics at the morg site are of skin scrapings from bullous, or vesicular lesions. They are fingernail scrapings, not biopsy specimens. They mean nothing. Every single image that contains fibers show that they are loose fibers simply laying on the surface. There is no evidence whatsoever that they emanate from any lesion. One report IDed them as cellulose. The fact is that these fibers remain absolutely uncharacterized. It takes virtually no effort to do that. Since it has not been done, there is even less reason to believe any of this.
The lesions themselves fall into all sorts of classification. Again, they are not characterized and there are no histological reports, or findings. In total, all this hype about this xfile disease means is that the docs these folks have been going to don't have a clue about how to go about determining their patient's illness. That includes the clueless PhD at the OK univ.
It also beats me how they can only show intact vesicular lesions, when the common complaint of morg's is incessant itchy, scatchy, painful crawling sensations. They should all be excoriated.
I would also look into the connection to Lyme disease and chronic meth or heroine use as possible causes. The Lyme disease could possibly produce the physical and mental symptoms described.
I think the Lyme disease connection is something to look into.
One medical professional in Austin, Texas may have found a clue to the Morgellon’s mystery. Ginger Savely is a nurse practitioner who specializes in treating the tick borne Lyme disease. She also has first hand experience with the mystery disease. "Right now I think I have about twenty eight Morgellons patients," says Savely. According to Savely, the anti-biotics she gives to patients with lyme are also working on some Morgellons patients.
It's possible some new type of Lyme disease is wrecking havoc on people's minds.
Lyme is caused by Borrelia burgdorferi. They'd find the anti bodies to it, or the other symptoms present in the latent disease stages.
See #96. Placebo effect you think?
I think those patients that are responding to antibiotics simply have a bacterial infection of unknown cause. Penicillin is used to treat primary Lyme and the later stages of the disease.
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