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.
So what's your take on Morgellons? Just another name for delusional parasitosis? The symptoms look identical to me.
I should also mention, that there is no nurse pratitioner that specializes in treating Lyme disease. This woman works in what I think is a 3 person dematology clinic in Autin, TX. If her nickname isn't Ginger, than she's one of the doc's wife.
In this case the "itch" moves. It's not a generalized area "itch". It's more common to find folks with an idiopathic generalized area itch. The docs just can put a finger on the cause and either attack it as a trial and error thing, or just dismiss it as delusional. I assume that most patients are not delusional.
With this media reported morg's disease, there are physical findings, lesions and other phenomena that haven't been examined and studied by real scientists. That's not something that's hard to do. In addition, the descriptions of the lesions are all over the place. I can also see that the fibers in the posted imsges are not part of the lesion. They are simply laying on the surface. It looks to me like these folks are a collection of patients from incompetent docs.
spunkets wrote: "I should also mention, that there is no nurse pratitioner that specializes in treating Lyme disease. This woman works in what I think is a 3 person dematology clinic in Autin, TX. If her nickname isn't Ginger, than she's one of the doc's wife."
That's a fair enough guess, but it would have been more honest of you to state that you were unable to verify, rather than your making the statement:
"...there is no nurse practitioner that specializes in treating Lyme disease."
According to Austin Advanced Practice Nurses, Ginger Savely, FNP-C, was named TNP NP of the year.
Further:
"In 1999 Ginger started to gain expertise in the diagnosis and treatment of tick-borne diseases.
She is now recognized as one of about 100 top Lyme disease specialists in the country and patients come to her from all over the state of Texas and from six other states as well.
Ginger is an active member of an exclusive professional organization in her field called ILADS (International Lyme and Associated Diseases Society). She also serves on the board of directors of the Texas Lyme Disease Association. She has organized two support groups for her patients.
Ginger is married to Bill Brands, a UT history professor and Pulitzer prize nominated author of 18 books ..."
Austin Advanced Practice Nurses
The lesions can be caused by the patient trying to dig the "bug" out of the skin, right?
DP includes physical findings. My grandmother would collect the "bugs" to try and show us. In her case we took her off some meds and the dr gave her some to treat the dp symptoms. We had to tell her the medicine was for getting rid of the bugs because she refused to take it when we tried to tell her the truth, that there were no bugs.
Spunkets, here is the website for International Lyme and Associated Diseases Society and an article about Ginger Savely, Nurse Practitioner of the Year. Nurse practitioner takes on Lyme disease
She's a nurse practitioner that works under the superviison of a doc. What you posted is career padding used for marketing purposes. She is not a research scientist, she treats patients according to the work of research scientists. Keep in mind that she works in a dematology clinic and very few of her patients have Lyme disease.
Nonsense.
This is a journalist's writup of Savely for promotional purposes.
That would be an excoriation. Notice there are no reports of and all the pics show an intact vesicular lesion. The epidermis is still present.
See her doc knew what was going on and changed the meds. I realize some folks will always insist there's something else going on. In general normal folks can have these syptoms from small muscle contractions in a wave motion though the skin, or just traveling waves of adjacent receptor firings. If the meds hyperpolarize certain nerves, or muscles, or change change transmitter concentrations, they'll have the effect of causing these things.
As a side note, you can generate the symptoms of delusional parasitosis in most women. The sight of cockroaches does an excellent job on most cases.
If this is the woman I'm thinking of, some other news story puts her down as working in Austin, TX.
I checked snopes. Couldn't find it.
San Francisco, Austin, whatever...
"Seems to be where the illegal invaders reside...probably caused by burritos"
bringing us diseases we could never dream of. Chagas is another disease. Only comes from Mexico and South America. Also known as the kissing bug disease. This causes enlargement of the abdominal organs and eventual death. NO CURE.
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