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Mysterious Skin Disease
Dear Dr. Rockoff:
Please check images at our website to see if you have any idea what might be causing the unknown skin disease we are researching.
The Morgellons Foundation
http://www.morgellons.org/
We are hoping to get detailed microscopy done to look for important clues to this organism. Thousands of people in the US have reported the unusual symptoms of this disease. California seems to be the state with the highest number of reports.
The symptoms of this skin disease include stinging, pruritic (itchy), non-healing skin lesions. FIBERS of unknown origin are found deep within skin lesions, and are NOT the result of clothing or environmental fibers. Oils or lotions rubbed into the skin can cause many of these fibers to surface on clean skin.
To study this, we have cleaned skin lesions and determined them to be fiber-free, by using a handheld microscope (30x Radio Shack). We then covered the lesions with a non fibrous dressing. When the dressings were removed, the fibers were once again observed to be embedded in the lesions.
We do not believe this is fungal based infection, as antifungals do not clear the lesions, nor the fibers. Antibiotics do not clear the lesions either. Topical steroids and immune-modulating medication, such as Protopic, relieves skin inflammation to a degree, but the condition appears to be chronic.
Please let me know if you have any insight into what is going on here.
Thank you!
Mary
Please check images at our website to see if you have any idea what might be causing the unknown skin disease we are researching.
The Morgellons Foundation
http://www.morgellons.org/
We are hoping to get detailed microscopy done to look for important clues to this organism. Thousands of people in the US have reported the unusual symptoms of this disease. California seems to be the state with the highest number of reports.
The symptoms of this skin disease include stinging, pruritic (itchy), non-healing skin lesions. FIBERS of unknown origin are found deep within skin lesions, and are NOT the result of clothing or environmental fibers. Oils or lotions rubbed into the skin can cause many of these fibers to surface on clean skin.
To study this, we have cleaned skin lesions and determined them to be fiber-free, by using a handheld microscope (30x Radio Shack). We then covered the lesions with a non fibrous dressing. When the dressings were removed, the fibers were once again observed to be embedded in the lesions.
We do not believe this is fungal based infection, as antifungals do not clear the lesions, nor the fibers. Antibiotics do not clear the lesions either. Topical steroids and immune-modulating medication, such as Protopic, relieves skin inflammation to a degree, but the condition appears to be chronic.
Please let me know if you have any insight into what is going on here.
Thank you!
Mary
For the life of me can't understand why doctors can't just say well, I've never heard of that, but let's do some research to the fullest extent. I've noticed they can easily say, I don't know, are you under stress? Usually followed by a script or two and a a gentle nudge to the door. They have a chem peel waiting in the next room that doesn't require much "doctor thinking". I read this forum to see what kind of advise is given to those with unknown skin problems. I often wonder, with all of the new technololgy and understanding in biology, why wouldn't microbiologist be used instead of shrinks? My thought is it's cheaper to medicate and sedate a patient rather than run the many tests that are available? Just my humble opinion, I'm off to see the fourth dermatologist in less than 3 years. If I lived near you Dr. Rockoff, I'd take you up on your offer. I'd let you perform all the tests you could possibly think of. I don't have lesions with fibers in them.
However I do have something that has caused my hair to fall out, skin thicken, hair like fibers that grow on the top of my skin. that I have sent to a biologist who phase contrast scoped them and these images have been sent to a biologist who deals with things of this nature. I'm glad that you are here for all the many people who need a quick fix. And I'm sure you've had your fill on this topic. But let me assure you, that Skin Researcher has shown determination to find answers to a very real problem. The biggest problem has always been exactly what she has pointed out. Getting doctors to hear what we are telling them, to look at what we are showing them, to admit that it is beyond their learned experience and direct them to the next level of scientific research?
However I do have something that has caused my hair to fall out, skin thicken, hair like fibers that grow on the top of my skin. that I have sent to a biologist who phase contrast scoped them and these images have been sent to a biologist who deals with things of this nature. I'm glad that you are here for all the many people who need a quick fix. And I'm sure you've had your fill on this topic. But let me assure you, that Skin Researcher has shown determination to find answers to a very real problem. The biggest problem has always been exactly what she has pointed out. Getting doctors to hear what we are telling them, to look at what we are showing them, to admit that it is beyond their learned experience and direct them to the next level of scientific research?
I have to join in here on the unknown rashs. I have one that I've had for years, never has went away and no doctor can seem to get rid of it either. It can be helped a little from topical creams but it always is still there, maybe less itchy but then it comes back again. I've given up on it, but would love to see someone find a cure! It is embarrassing as it is now all over my back side. Vaseline gives me some relief from the itching but it doesn't go away. Somebody please help with the rashes, I know lots of people with weird rashes in weird places that they've had for years!
Just an odd comment, after reading the thread of discussion, from a layperson's point of view. The comments have been made that there are no "bugs" that produce fibers. It would seem to me (again, layperson's point of view) that there some that we all know of without even having to think too much about it...like silkworms? spiders?
I am so relieved and yet a bit upset after reading this thread. Relieved as I have been looking for something to explain what is upsettingly very crazy sounding and hard to explain to anyone and make them believe a word your saying. I have been sufffering from what sounds like a very similar condition lately and have been obsessive trying to find anything on record that discribes the condition I suffer from daily. The common factors with me are the open sores that don't seem to heal ever, and the most important factor that tied me to this was the mention of fibers. I have that as well and its the most insane thing as I know it sounds crazy but that is what it is, I haven't sought medical treatment for this condition as of yet due to lack of health insurance and more importantly because I can't even get my significant other to believe me as it sounds so crazy to him. We've had fights over the possibity of this as I have discribed it. I've even bought my own microscope (a cheap one admittadly) but one that does magnify up to x600 and was amazed at the cells i examined. I'm no medical expert but it certainly looked organic in nature to me as there appeared to be deadened fibers in amoungst the seemingly healthy fibers. The disbelief of the condition as you have clearly stated does upset me as it does sound unbelieveable. I assure you that whether or not it is a new organizm or just textile fibers I am truely troubled by the symptoms that I've been suffering from so much so that I've developed a bit of social phobia thinking that the fibers could dislodge and spread to others. I've never been afraid to leave my house before this started to happen to me. I would definately be interested in finding a name or reason for this condition as its "bugging" me to the point of going crazy over obsesively trying to find the medical condition through researching my syptoms and from suffering from the itch and sting and general feeling of anxiety of not knowing what it is. I live in NYC and started to experience these present conditions not long after 9/11 so it could be quiet possible that its from something in the air from the distruction of the twin towers. I dare you to prove me wrong that it isn't something new or (lol) an alien life form invading my body. I'm not a conspirasy theorist so i've looked every where in the conventional areana for answers and have found nothing. I am a grown man and find myself in tears somedays as this condition has got me so on edge and I sound crazy to my partner and can't support my symptoms with hard medical facts. Please keep me informed if you are to find anything in the future.
MEDICAL PROFESSIONAL
You say you don't believe it is a "bug." Your website says:
"This skin disease is believed to be caused by an organism which has been difficult to identify." In one of your responses, you say:
My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.
An organism is a living thing, whether you call it a bug or not. What makes you think there is a living thing causing these fibers. And since they haven't been chemically characterized, how do you know they're cellulose?
When doctors communicate with each other, they describe symptoms and signs so that everyone can agree (or disagree) about whether everyone is talking about the same thing. The 2000 people collected by the Newton, MA organization--how do they know they all have the same thing? What are the criteria of diagnosis? As to the internist, did he consult a dermatologist? Why not? Bias again?
Although you claim your cuase is not conspiratorial, I cannot agree. Vague hints of unpseciified "bias," implications that the medical community won't listen, internists who won't give names--these smack of conspiracy theorizing to me.
I am a member of the conventional community and I work 10 minutes from Newton, MA. I am willing to examine some of your patients at no charge, and with an open mind. My only requirement is that I be allowed to perform laboratory tests to assess the skin and the fibers, if any.
If you wish to discuss this futher, please contact me through my website hyperlink.
Dr. Rockoff
"This skin disease is believed to be caused by an organism which has been difficult to identify." In one of your responses, you say:
My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.
An organism is a living thing, whether you call it a bug or not. What makes you think there is a living thing causing these fibers. And since they haven't been chemically characterized, how do you know they're cellulose?
When doctors communicate with each other, they describe symptoms and signs so that everyone can agree (or disagree) about whether everyone is talking about the same thing. The 2000 people collected by the Newton, MA organization--how do they know they all have the same thing? What are the criteria of diagnosis? As to the internist, did he consult a dermatologist? Why not? Bias again?
Although you claim your cuase is not conspiratorial, I cannot agree. Vague hints of unpseciified "bias," implications that the medical community won't listen, internists who won't give names--these smack of conspiracy theorizing to me.
I am a member of the conventional community and I work 10 minutes from Newton, MA. I am willing to examine some of your patients at no charge, and with an open mind. My only requirement is that I be allowed to perform laboratory tests to assess the skin and the fibers, if any.
If you wish to discuss this futher, please contact me through my website hyperlink.
Dr. Rockoff
Dear Dr. Rockoff:
I know that you believe I am misinterpreting the skin situation we have been discussing. I assure you that I am 100% on target, and merely reporting the facts.
I am not insulted by your responses, rather I feel that your perspective is an example of why this disease has not been recognized by the medical community, and why the cause of many inflammatory skin diseases remains "idiopathic."
No, I do not believe this is a "bug" in the insect-meaning of the word. No insects produce cellulose, that I am aware of. Although one organization involved with this disease believes it is caused by Collembola, a nonparasitic insect. My belief is that Collembola were incidental findings when they were recovered from skin scrapings of the patients studied. That is only my humble opinion. There are many theories about the cause of this disease. Again, no published papers yet.
However, cellulose fibers have been found associated with human skin pathology. See the following references:
Cellulose in human disease
http://www.botany.utexas.edu/facstaff/facpages/mbrown/newstat/stat39.htm
Cellulose Fibers in Scleroderma skin
http://www.botany.utexas.edu/facstaff/facpages/mbrown/Phildoc/Figure5.htm
Do I think human have genes for producing cellulose? No. Do I think insects are causing this disease? No. Do I know what is causing this? No. Do I want to know what is responsible for the fibers and lesions? Yes, this is my child.
There is a Boston MD (Internist) who has been treating a patient with this skin disease. I hesitate posting his name, without his permission. The doctor was concerned by the unexplained symptoms, namely lesions with fibers, experienced by his patient, and actually contacted a Boston TV station about the disease. A story about this skin disease aired on the Boston evening news in late May, 2002.
A Newton, MA, organization has collected the names of over 2,000 individuals with the symptoms of this disease, and forwarded a report to the CDC in November, 2001.
The numbers of people reporting the symptoms of this disease appear to be rising.
Again, I truly appreciate your discussion.
Best wishes,
Mary
I know that you believe I am misinterpreting the skin situation we have been discussing. I assure you that I am 100% on target, and merely reporting the facts.
I am not insulted by your responses, rather I feel that your perspective is an example of why this disease has not been recognized by the medical community, and why the cause of many inflammatory skin diseases remains "idiopathic."
No, I do not believe this is a "bug" in the insect-meaning of the word. No insects produce cellulose, that I am aware of. Although one organization involved with this disease believes it is caused by Collembola, a nonparasitic insect. My belief is that Collembola were incidental findings when they were recovered from skin scrapings of the patients studied. That is only my humble opinion. There are many theories about the cause of this disease. Again, no published papers yet.
However, cellulose fibers have been found associated with human skin pathology. See the following references:
Cellulose in human disease
http://www.botany.utexas.edu/facstaff/facpages/mbrown/newstat/stat39.htm
Cellulose Fibers in Scleroderma skin
http://www.botany.utexas.edu/facstaff/facpages/mbrown/Phildoc/Figure5.htm
Do I think human have genes for producing cellulose? No. Do I think insects are causing this disease? No. Do I know what is causing this? No. Do I want to know what is responsible for the fibers and lesions? Yes, this is my child.
There is a Boston MD (Internist) who has been treating a patient with this skin disease. I hesitate posting his name, without his permission. The doctor was concerned by the unexplained symptoms, namely lesions with fibers, experienced by his patient, and actually contacted a Boston TV station about the disease. A story about this skin disease aired on the Boston evening news in late May, 2002.
A Newton, MA, organization has collected the names of over 2,000 individuals with the symptoms of this disease, and forwarded a report to the CDC in November, 2001.
The numbers of people reporting the symptoms of this disease appear to be rising.
Again, I truly appreciate your discussion.
Best wishes,
Mary
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