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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
MEDICAL PROFESSIONAL
Mary:
I wish you luck. I still don't really undertand why you think "fibers" imply microorganisms. What bugs do you know which produce fibers.
Also, who are the "we" you refer to. How many other people are convinced they have the "same thing" as your son, and how do you know they're right? Did they all look with the same microscope?
Your concern with finding a "cause" is undertandable, but the world is full of phenomena which don't have that kind of simple cause. The idea that you can go to Radio Shack and find what all the medical scientists on the world have overlooked is attractively romantic, but not very realistic.
Of course, you could take a simple step to find out what's happening--you could biopsy a sample and have a laboratory analyze the content of the fibers. You could take this step but you won't. If you really believe your son is being invaded by an organism, you need to ask yourself why you won't take the simple and barely invasive step toward findinng out what it is. I leave it to you--and the others egnaged in research with you--to answer this question.
The Atlantic article is not about new germs, but about selective evolutionary pressures on old ones. Cholera is not a mysterious unknown germ.
If you ever come up with what you are satisfied is an answer, please let me know.
Dr. Rockoff
I wish you luck. I still don't really undertand why you think "fibers" imply microorganisms. What bugs do you know which produce fibers.
Also, who are the "we" you refer to. How many other people are convinced they have the "same thing" as your son, and how do you know they're right? Did they all look with the same microscope?
Your concern with finding a "cause" is undertandable, but the world is full of phenomena which don't have that kind of simple cause. The idea that you can go to Radio Shack and find what all the medical scientists on the world have overlooked is attractively romantic, but not very realistic.
Of course, you could take a simple step to find out what's happening--you could biopsy a sample and have a laboratory analyze the content of the fibers. You could take this step but you won't. If you really believe your son is being invaded by an organism, you need to ask yourself why you won't take the simple and barely invasive step toward findinng out what it is. I leave it to you--and the others egnaged in research with you--to answer this question.
The Atlantic article is not about new germs, but about selective evolutionary pressures on old ones. Cholera is not a mysterious unknown germ.
If you ever come up with what you are satisfied is an answer, please let me know.
Dr. Rockoff
Hi Dr. Rockoff:
I wish I had more answers than I do.
I guess the only way you would know if someone had the Morgellons (for lack of a better name) is by examining the lesions in situ with a handheld microscope. I'm sure you have a better one than mine, but I have used a Radio Shack 30x lighted, handheld microscope ($7.99) to view the lesions recently with a dermatologist and he was impressed with what he saw. He is interested in the research we are doing, but had no idea what was causing the lesions or fibers on my three year old son. The only help he could offer was to treat the resultng skin inflammation with Elidel, a topical immunomodulator.
We have used Diprolene and various topical steroids in the past with success treating the inflammation, but want to avoid steroids. The Elidel quiets the skin inflammation about 50-75%, if used regularly.
Sideline:
(My thinking is that treating the skin inflammation resulting from either the organism or the fibers, is like treating a sinus infection headache with Ibuprofen. We are controlling the symptoms without treating the underlying infection. Without addressing the cause of the inflammation, we are destined to continue the cycle of trying to control the inflammation with topical immune modifying meds. My opinion (and I fully realize that it is only my opinion) is that rather than a malfunction of the immune system, this skin inflammation is actually an appropriate immune response to an invading organism. You may argue; which came first the inflammation or the organism, if it is indeed an organism, and your argument would be correct. Does my son have an underlying eczema, which creates inflammed and broken skin which is easily invaded by an opportunistic organism, or does the organism simply inflame normal skin, creating what in my son's case has been described by multiple physicians as "classic eczema"? These arguments are worth consideration.)
The Radio Shack microscope has been discontinued, but I'm sure there are others on the market. The microscope makes it easier to understand what is going on with the lesions, since I do realize it sounds unbelievable that the fibers come from within the lesion, and are not due to some environmental source.
I would love to have a dermatopathologist's take on skin samples with embedded fibers.I would not biopsy my son at this point, but I know of people who would certainly be willing to be biopsied again if they thought something would come of it.
As for past slides or medical records, I don't know particulars for other people. In my son's case, no one has ever wanted to discuss the fibers before the last appt when we used the microscope. Other physicians have told me that fibers are always from textiles.
Here is an interesting article and theory about unknown microorganisms as the cause of disease.
Click here: A New Germ Theory - 99.02
http://www.theatlantic.com/issues/99feb/germs.htm
Again, thank you for your open-minded discussion. Unfortunately, I have more questions than I do answers.
Best wishes,
Mary
I wish I had more answers than I do.
I guess the only way you would know if someone had the Morgellons (for lack of a better name) is by examining the lesions in situ with a handheld microscope. I'm sure you have a better one than mine, but I have used a Radio Shack 30x lighted, handheld microscope ($7.99) to view the lesions recently with a dermatologist and he was impressed with what he saw. He is interested in the research we are doing, but had no idea what was causing the lesions or fibers on my three year old son. The only help he could offer was to treat the resultng skin inflammation with Elidel, a topical immunomodulator.
We have used Diprolene and various topical steroids in the past with success treating the inflammation, but want to avoid steroids. The Elidel quiets the skin inflammation about 50-75%, if used regularly.
Sideline:
(My thinking is that treating the skin inflammation resulting from either the organism or the fibers, is like treating a sinus infection headache with Ibuprofen. We are controlling the symptoms without treating the underlying infection. Without addressing the cause of the inflammation, we are destined to continue the cycle of trying to control the inflammation with topical immune modifying meds. My opinion (and I fully realize that it is only my opinion) is that rather than a malfunction of the immune system, this skin inflammation is actually an appropriate immune response to an invading organism. You may argue; which came first the inflammation or the organism, if it is indeed an organism, and your argument would be correct. Does my son have an underlying eczema, which creates inflammed and broken skin which is easily invaded by an opportunistic organism, or does the organism simply inflame normal skin, creating what in my son's case has been described by multiple physicians as "classic eczema"? These arguments are worth consideration.)
The Radio Shack microscope has been discontinued, but I'm sure there are others on the market. The microscope makes it easier to understand what is going on with the lesions, since I do realize it sounds unbelievable that the fibers come from within the lesion, and are not due to some environmental source.
I would love to have a dermatopathologist's take on skin samples with embedded fibers.I would not biopsy my son at this point, but I know of people who would certainly be willing to be biopsied again if they thought something would come of it.
As for past slides or medical records, I don't know particulars for other people. In my son's case, no one has ever wanted to discuss the fibers before the last appt when we used the microscope. Other physicians have told me that fibers are always from textiles.
Here is an interesting article and theory about unknown microorganisms as the cause of disease.
Click here: A New Germ Theory - 99.02
http://www.theatlantic.com/issues/99feb/germs.htm
Again, thank you for your open-minded discussion. Unfortunately, I have more questions than I do answers.
Best wishes,
Mary
MEDICAL PROFESSIONAL
Did every patient in your series have fibers? Were they all the same sort of fibers? Without chemcial analysis of the fibers, how do you know they were all the same?
Who saw the cellulose fibers and dismissed them as artifacts? Where are their reports? If you have the slides, I can help you find pathologists to review them.
Where are the records of the dermatologists who saw all these patients?
I am a clinical dermatologist only. What are the clinical symptoms which convice you that all these patients have the same thing? Your website says:
Individuals with the Morgellons experience itchy, inflamed, non-healing skin lesions. Stinging sensations are common. Unexplained hairloss is seen in a segment of the patient population, as well as a hardening or thickening of skin.
20% of the people I see every day have itchy stinging lesions. If they scratch, the lesions don't heal. Do they all have Morgellons? How would I know?
Dr. Rockoff
Who saw the cellulose fibers and dismissed them as artifacts? Where are their reports? If you have the slides, I can help you find pathologists to review them.
Where are the records of the dermatologists who saw all these patients?
I am a clinical dermatologist only. What are the clinical symptoms which convice you that all these patients have the same thing? Your website says:
Individuals with the Morgellons experience itchy, inflamed, non-healing skin lesions. Stinging sensations are common. Unexplained hairloss is seen in a segment of the patient population, as well as a hardening or thickening of skin.
20% of the people I see every day have itchy stinging lesions. If they scratch, the lesions don't heal. Do they all have Morgellons? How would I know?
Dr. Rockoff
Dear Dr. Rockoff:
I have never considered that there is any type of conspiracy thing going on with this unknown skin disease. I am sorry if I implied as much.
There are those who might disagree with me about that, but my thinking does not go in that direction. My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.
There is a great website on the history of H. pylori, below is an excerpt:
Helicobacter pylori and Ulcers: a Paradigm Revised
http://www.faseb.org/opar/pylori/pylori.html
"The scientific breakthrough that involved Helicobacter occurred in 1982, when J. Robin Warren and Barry Marshall isolated a new bacterium and showed that it caused gastritis and stomach ulcers, diseases that affect millions of humans worldwide. As happens with many scientific advances, this breakthrough initially gained its momentum from the creative insights of an independent investigator. Although they were the first to succeed in establishing a link between bacteria and ulcers, the Australians were not the first to try. Since the time of Robert Koch in the late19th century, microscopists observed curved bacteria among the cells under the mucus lining of the stomach, particularly in and around ulcer craters. No one had ever succeeded in isolating the microorganisms, however, and their presence had been explained away as artifact or postmortem contamination."
You asked what the common finding in these patients is, besides the skin lesions. All patients have the fibers, which have been determined to be cellulose fibers by polarizing light microscopy. Also, these fibers stained positive with Calcofluor white.
The fibers can be removed from deep within the skin lesions, under thick scabs in many cases. There are not just a few fibers, there are great numbers of them. These are clearly not random textile fibers.
The lab that is helping us is an Electronmicroscopy lab. They are receiving no money, they just see the reality of our situation and want to help. They are curious scientists, and they also believe us when we insist that the fibers are not artifact or contaminants. That has been the most difficult task I have ever experienced, getting professionals to consider the possibility that my observations are correct.
I have been contacting people since August, 2001. I have convinced very few professionals that the fibers are intrinsic to the lesions, produced by an organism within the lesions. The fibers are a major clue to this organism, it is a shame they have been dismissed as artifact in the past.
I certainly don't have all the answers, but I am willing to keep looking until the answers are found. No published papers, no references to direct you to. Sorry, I wish there were.
Thank you for your willingness to discuss this subject!
Best wishes,
Mary
PS
Another great site on the subject of unknown organisms, which references a paper suggesting a reassessment of Koch's original postulates:
Click here: Detection and Identification of Previously Unrecognized Microbial Pathogens
http://www.cdc.gov/ncidod/EID/vol4no3/relman.htm
I have never considered that there is any type of conspiracy thing going on with this unknown skin disease. I am sorry if I implied as much.
There are those who might disagree with me about that, but my thinking does not go in that direction. My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.
There is a great website on the history of H. pylori, below is an excerpt:
Helicobacter pylori and Ulcers: a Paradigm Revised
http://www.faseb.org/opar/pylori/pylori.html
"The scientific breakthrough that involved Helicobacter occurred in 1982, when J. Robin Warren and Barry Marshall isolated a new bacterium and showed that it caused gastritis and stomach ulcers, diseases that affect millions of humans worldwide. As happens with many scientific advances, this breakthrough initially gained its momentum from the creative insights of an independent investigator. Although they were the first to succeed in establishing a link between bacteria and ulcers, the Australians were not the first to try. Since the time of Robert Koch in the late19th century, microscopists observed curved bacteria among the cells under the mucus lining of the stomach, particularly in and around ulcer craters. No one had ever succeeded in isolating the microorganisms, however, and their presence had been explained away as artifact or postmortem contamination."
You asked what the common finding in these patients is, besides the skin lesions. All patients have the fibers, which have been determined to be cellulose fibers by polarizing light microscopy. Also, these fibers stained positive with Calcofluor white.
The fibers can be removed from deep within the skin lesions, under thick scabs in many cases. There are not just a few fibers, there are great numbers of them. These are clearly not random textile fibers.
The lab that is helping us is an Electronmicroscopy lab. They are receiving no money, they just see the reality of our situation and want to help. They are curious scientists, and they also believe us when we insist that the fibers are not artifact or contaminants. That has been the most difficult task I have ever experienced, getting professionals to consider the possibility that my observations are correct.
I have been contacting people since August, 2001. I have convinced very few professionals that the fibers are intrinsic to the lesions, produced by an organism within the lesions. The fibers are a major clue to this organism, it is a shame they have been dismissed as artifact in the past.
I certainly don't have all the answers, but I am willing to keep looking until the answers are found. No published papers, no references to direct you to. Sorry, I wish there were.
Thank you for your willingness to discuss this subject!
Best wishes,
Mary
PS
Another great site on the subject of unknown organisms, which references a paper suggesting a reassessment of Koch's original postulates:
Click here: Detection and Identification of Previously Unrecognized Microbial Pathogens
http://www.cdc.gov/ncidod/EID/vol4no3/relman.htm
MEDICAL PROFESSIONAL
What kind of laboratory is helping out? A pathologist? And what kind of bias do you suspect another laboratory of having that this lab will not have? Talk of bias sounds a conspiratorial note. Do you think there is a conspiracy to not diagnose this?
Pathologists do not only look for "something known." When they see new findings not seen before they publish papers to tell the world about them. What have the ones who have looked at your patients said they saw? Have they published any papers in the medical literature? If so, I would be happy to look them over, if you'll provide me the references.
By the way, how do you know all the people you have in mid have the same disease. To be sure of that, there would have to be a disease definition--which signs and symptoms, and so forth. What do all your patients have in common, other than having a rash which their doctors can't diagnose?
Thanks.
Dr. Rockoff
Pathologists do not only look for "something known." When they see new findings not seen before they publish papers to tell the world about them. What have the ones who have looked at your patients said they saw? Have they published any papers in the medical literature? If so, I would be happy to look them over, if you'll provide me the references.
By the way, how do you know all the people you have in mid have the same disease. To be sure of that, there would have to be a disease definition--which signs and symptoms, and so forth. What do all your patients have in common, other than having a rash which their doctors can't diagnose?
Thanks.
Dr. Rockoff
Dear Dr. Rockoff:
Yes, many of the people with this unknown skin disease have seen dermatologists. The dermatologists cannot determine what is causing the symptoms.
Sadly, many of the adults with these symptoms are thought to be delusional since their symptoms cannot be attributed to a known cause. I admit that the mention of the fibers has a tinge of craziness to it, but nonetheless the fibers are are intrinsic to the lesions.
The microscopy work I mentioned is being done by a lab who has volunteered their time to help us. They are willing to look, without bias.
The problem thus far has been that labs receiving biopsies are sent to pathologists who are looking for something known. Something known is not seen and the answer has not been found.
I thought you might have possibly heard of these symptoms somewhere in your academic travels.
I apologize for using the word "Mysterious", as I didn't mean to sound silly.
Thanks for your input!
Mary
Yes, many of the people with this unknown skin disease have seen dermatologists. The dermatologists cannot determine what is causing the symptoms.
Sadly, many of the adults with these symptoms are thought to be delusional since their symptoms cannot be attributed to a known cause. I admit that the mention of the fibers has a tinge of craziness to it, but nonetheless the fibers are are intrinsic to the lesions.
The microscopy work I mentioned is being done by a lab who has volunteered their time to help us. They are willing to look, without bias.
The problem thus far has been that labs receiving biopsies are sent to pathologists who are looking for something known. Something known is not seen and the answer has not been found.
I thought you might have possibly heard of these symptoms somewhere in your academic travels.
I apologize for using the word "Mysterious", as I didn't mean to sound silly.
Thanks for your input!
Mary
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