Thank you for your query.
Since you have a foundation and a mission, you can perhaps explain what you mean by, "We are hoping to get detailed microscopy done to look for important clues to this organism." Microscopy is available through biopsy by any dermatologist. Have you consulted one?
You appear to be looking for an "organism" which produces mysterious fibers under the skin. Since I know of no such organism, I can do no better than wish you good luck. If you come up with anything, please let me know.
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!
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?
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
"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!
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
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?
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.
(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
Again, thank you for your open-minded discussion. Unfortunately, I have more questions than I do answers.
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.
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
Cellulose Fibers in Scleroderma skin
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.
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.
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.
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 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!
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?
Three months ago I started getting little blusters on my hands small bumps with clear fluid.The itching is unreal my doctor gave me a hurpis test and it was negative I don't understand why he gave me that test as the bumps where on my hands.
He gave me staroids by mouth for a week also.Hydrocortisone cream help some.Now three months later it feels like it's in my joint in my fingers it's very hard to touch anything.There are masses of small blusters .
The skin is pealing of.Raw skin in some spots.Jionts are swollen and I am in much pain.My doctors is sending me to a dermatologist on the 8/19.I don't think I can wait that long.
I am disabled and have many other health problem. I talk with a sicologist and he thinks it's nerv related.(post tramic stress,degenerate disc des,spinal stinosis,ex..)any help in the right derection would help so much.The rash is now speading to neck and chest arm leggs.But for it doesn't itch anywhere else but the hands.
I do live in the wood 30 mile from town.Also Any thing hot on my hands is Very painfull.
I went to the doc and found out that the rash is eczema Atopic (an inflammatory condition of the skin that includes redness,itching,oozing vesicular lesions which become scaly ,crusted,or hardened.causes include hypersensitivity to chemicals,metals,plaints( poison ivy),or chronic irrition detergent or soaps.Anxiety,stress,and depression may play a role in the exacerbation of eczema.Hope this is of help to someone as alot of people have the same small water blisters.treatment included antibiotics and flucinonide 0.05% oint.White cotton gloves at night .The itching has alread become more barrable and new skin is coming back under where the blisters where.Ask your doc if this might be the problem your having.Sinerely,Frosted
I wish it were that easy for the rest of us. I was a patient of a doctor whose credentials were quite impressive in the area of psorias and eczema. If I had that I'm certain he would have picked up on that. He's been around for a very long long long,(did I mention long?)time. I'm very happy that your health issue was handled in a timely manner. It's rather odd that your general physician wasn't able to diagnose eczema. But nothing really should strike me as odd anymore. I too was just seen by a dermatologist 8~1~02. He is a rather young doctor, said that this was out of his expertise and advised me (and my general practioner) to go to a university here in my state. This particular university has an extensive derm dept. It's taken quite awhile to get to this place, but I think that it is a step in the right direction. If this young doctor is any indication of how our health system is going to be handled in the future, I will breathe easier for the lot of us. It's going to put a crunch on labs that manufactor "stress meds" but I'd much rather be skin afflicted and know that I am, than stupified and denied by doctors and their mood enhancers.
Again, glad to know you are well. Take care,
Can you tell me what ELIDEL(pimecrolimus)cream is used for?The doctor gave it to me for a round rash on my arms and leggs.
Elidel is a topical immune-modifying agent. This means it turns off the immune response in the skin.
It is similar to Tacrolimus, which is the topical form of an antirejection drug used to stop rejection in organ transplant patients. The original drug was called FK506 by researchers.
The information I have is that the drug molecule is too large to be absorbed through the skin into the person's system (systemic absorption).
Elidel worked at first for my son's skin condition, but seems to not be as effective now. Topical steroids help his skin inflammation, but we fear their long-term side effects.
Strange skin problems began around 1996 and stopped around 2000.
I have determined along with another person who also had the exact skin probem at the exact same time, it was caused by EMF.
EMF is non-ionizing Radiation. Doctors specialized in EMF also agree rashes and dry skin are becoming more common. This is often from computer monitors (especially if you have your hands near the monitor for great lengths of time) and also from cell phones and cell phone tower transmitters. This at first sounds unreal, but it its true. Our bodies are not built for the amount of additional radiation that has been introduced in recent years and the rash and dryness are just some of the symptoms that the body shows us as a form of early warning. EMF does not always heat the skin, but it does penitrates the skin. The skin becomes very dry and itchy. The toes and nuckles are key locations but also the face, feet, arms, butt and even eyes are secondary spots. EMF Sensitivity is talked about worldwide, but is only known to people who have really researched to find what researchers are really finding. Skin creams will temporarily calm down the inflamation but if you are in a high EMF area, the skin will likely begin again. The hands especially are dry and often crack the skin to the point where the skin bleeds. Again i have found others with this strange health reaction. research under EMF and EMS (electromagnetic sensitivity) Hope this helps. Keep skin moist when inflamed, protective wrap in band-aid and try to avoid scratching.
I forgot to mention very good references to back up these statements. Please forgive me for its length, but its quite important.
I ended up at this site because my daughter is desperate to find a cure for her child's skin condition.I am an intensive care nurse and too have been devistated over this child's suffering...I was appauled at the responses that Dr. Rockhoff has given this "skin researcher".First of all..if doctors listened to what we are all saying and truly researched into our concerns and findings instead of dismissing all of us with a cream and a drug and rush us out the door as if our lives and suffering meant nothing more than the next page on your prescription pad....there would NOT be this forum!!!...This researcher sounded genuine and held her decorum quite well under the circumstances...you Dr. Rockhoff sounded suspiscious, evasive, condeming, condescending, and uncompassionate..characteristics I've found too be all too similar amongst many medical practicioners and specialists I have interfaced with over the past years. A conspiracy?...How absolutely rediculous!..perhaps WE are starting to feel it's a conspiracy!!!..My children and I have been misdiagnosed by countless doctors and specialists...and suffered greatly for it..oops! sorry...I guess they should have tried listening to the patients and trying to find the cause instead of learning everything they know from the pharmaceutical companies after what they learned in medical school..sorry.. I don't mean to imply that you never went on to gain new insight on recent findings in medicine...but your answers "smack" of the same feeling I got from the doctors who also wouldn't listen..and failed ...where did I find the answers to finally help us?...from frantically filing through thousands of pages from the same people who are also not finding help from their doctors..God Bless them..they make more sense than the doctors!..yes I know that it can be dangerous to sift through these sites to find answers..But even as an intensive care nurse of 18 years I have found more valid and rational thought from these deperate people than any Doctor I have EVER met!!!!they have LIVED with this!..they die with this!..THEY suffer from it!..you go home with them and see what it's like to hold this bleeding child in agony day after day...night after night!!!!this researcher may very well be on to something..oh sorry doctor..she already put her name on the little critter!...you wouldn't get the glory...so why waste your time...I know some people who will!...and their name won't be prefixed by DR...the rest of you people in need ...there are wonderfull Docs out there..but if they look at you for 2 seconds and write a prescription and don't have time for your.."strange' family histories or unusual findings or patterns...walk out fast..find a new one...they've learned all they can and don't care to learn more..drugs and creams are consumable products..they can be ordered over and over..why do you think drug companies don't sell cures?...they can't keep collecting on a cured person..it's just not a lucrative business...WE must then find them..Sorry doctor..I don't want to hear " there is no cure..we don't know why..."...I don't want to be treated for life.....I want answers...If this researcher hadn't used such a small scope I'd be inclined to believe her pictures and renderings appear mysteriously..(oops!..I used that word!..must be a conspiracy here!)looks like the Lyme borrelliosis spirochete as it "shape shifts"...but then of course you probably don't know what I'm talking about..sorry to sound sarcastic..but then I guess I've about had it too...your responses stung to the core of every person that suffers trying to find help..thanks for all the help doc!..you owe this researcher an appology...
You mentioned that a lab is going to do test for you to see what they come up with. I wish i can get that same help althoug my condition is from something else. I will pay the lab for their services. I am in florida. This microscope you mentioned
can i get it somewhere else to buy if so can you post the info so tht i can purchase this microscope. Right now i am ithcing so badly. But i feel somehow i am not alone. which is a bit comforting.
If you go to our website:
There is a link on the website for"Inexpensive Microscopes". There is information here on the microscope that was used to create the pictures on the website. Some local Toys R Us are still selling their remaining stock of this microscope, which is the "Intel Play QX3" for around $30. This is an unbelievable bargain, as it is equipped with a digital microscopic camera and save pictures directly to your hard drive.
EMail us through the website for more information.
My husband has poured and finished cement for 30 years. this has happened a few times before. for at least 2 months his skin burns. His arms and legs feel like an aligator might feel. These areas are raised. He can not stop the burning and itching. he scratches till he bleeds. Today he said he thought he saw green pus from an area on his arm. He has used benadryl, decadron and creams from the dermatologists. he takes atarax 20 mg at night. we first thought it was his medication and stoped the thorzine. No change. He is left with salsalate,trazadone, zoloft,glucosomine and a vitamin. The dermatologist thought it might be a reaction to the potassium in the concrete. he has since been forced to give up his business. the biopsy came back "nothing". I can not find any information about concrete poisioning on the web. It could be a toxic effect of the medicine but i really believe he has a condition related to working around the concrete. Have you any had any other cases like this?
Thank you for your time.