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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
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Avatar universal
A related discussion, morgellons parasite was started.
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explain the present of fomdahyde on the skin. Fiberglass was made with fomdahyde and when contact is made it provides an opening by killing the cell structure. So all types of material can pass under the skin. Once these particles enter ther to large to exit, irritation forms, then soars then all particle migrate towards soars and soars remain open. This is short and have this. Fiberglass dermatitus. Fiberglass is located in all 4 walls and ceilings. and is circulated by your ac.

Willing to accept any research or doctors view

in search
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Hello
I haven't read all the post ,but have this leasion with fibers.
I beleive they are fiberglass fibers. Yes, there is a cover -up will post more. 9 months

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I have sent a phase contrast image directly to his office, via his personal email address. With a simple explanation of what was sent how it was taken and by whom. I went out and found a credible biologist who took me on as a pet project because he heard the desperation in my plea. This doctor has never has responded. All I am looking for is a doctor who can distiguish between, textile fibers, animal hair and human hair. You'd be shocked to learn that most (if not all) labs and doctors that provide a service online, are extremely reluctant to accept "stuff" from folks, because of all the kooks out here.
I find it very odd that chilipeppper has an unidentified bump and for whatever reason has turned to an internet doctor for answers? Why would you need to come here if answers, all answers are easliy come by through a regular doctor visit? It's because not all answers are easily attained. I can only hope that you find the answers you need before your condition worsens and or affects different aspects of your life, until then feel free to cause more doubt and throw around more inuendos. Have you ever thought about practicing medicine? You have the starter kit, doubt, an air of conceit along with the ability to pass judgement without trying to understand all of the facts. This has been the saddest most difficult thing about having a skin disorder that is unknown. I have read Dr. Rockoff's reponses to people for a very long time, in many of them he states that there are many things that remain ellusive to the medical field. Things that they yet have to find answers or understand.        If you choose to go to Google and simple put in psoriasis or eczema, things that are diagnosable, you'll soon learn that they still don't know what causes it. I think I'm safe in saying the medical field is a ongoing learning process. Hence the phrase,"practicing medicince". Skin researcher (Mary) has to remain vague when talking about doctors and other researchers and labs that are involved, it's a burden that many who are involve share. It's because of this type of response that makes people who have the technology hide in their labs. Would you put your name and the name of your institution out there for this kind of nay saying before it even got started? How do you think things are researched and or discovered? You'll never read a step by step, blow by blow description of what is taking place in a lab on the front page of a news paper. Why would you think this is any different. And this good doctor knows it. Shame on him for casting the first stone of doubt and shame on him for not gathering his own stones back. Only time will tell how valid our pleas are, in the end I hope something good comes of it, for everyone. Even for chilipepper's "bump".
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couldn't agree more. Dr R went the whole 9 yds & one would think it certainly well worth her taking advantage of, in view of the fact that she appeared to be asking for help ----which he offered!!!
Whazzup with THAT???   Sooze
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Hi,

I understand your perspective. I understand the prespective of Dr. Rockoff as well. For all he knows, I have invented every word of what I posted. He really does need to see this in person.

I have been trying to locate people with this unknown disease near Dr. Rockoff's office, since I am about 700 miles away and can't visit his office or I would.

I have also communicated Dr. Rockoff's interest in this disease to the organization who has the database of over 2,000 patients with this disease. The organization is the National Pediculosis Association, located in suburban Boston:

Reporting Registry - "Not Lice" Report
http://www.headlice.org/report/notlice.htm

I cannot be reponsible if this organization has not contacted Dr. Rockoff.  I certainly wish they would get his opinion.
I believe the more opinions, the better.

Some people with this disease have expressed concern to me that Dr. Rockoff seems to doubt this disease's existence. I believe that is a good thing, since he will not be trying to prove our hypothesis (ie that the disease symptoms are caused by an Organism), he will be making his own, objective opinion, based on physical evidence alone.

I could not ask for more than that. Please know that I am trying hard to find someone willing to see him.

My son's dermatologist is a fine man, university affiliated and does not understand what is causing the fibers.

Best wishes,
Mary






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Avatar universal
Tut Tut,

You sure sound angry. I cannot imagine what I did to anger you. Nope, I only spent the $19 for posting priveleges one time. I am an honest person and do not post under other guises. Not my style.

In response to me not taking my son to a "real Doctor", we have a real, highly qualified Board certified dermatologist who treats my son. I hardly avoid medical care, as we have seen 5 pediatricians, 2 dermatologists, 2 infectious disease specialists and one allergist. All are stumped.

Please make sure you read accurately. Why so hostile?
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Uh, AngelStar, did you actually READ the posts between Dr. R and Skin Researcher???!!!  The doctor asked pointed questions in attempting to get to the bottom of this issue.  None of the pointed questions were answered with anything but "I wish I had more answers for you."  He asked for ANY analysis results from the multitude of ANONYMOUS physicians that SR referenced, but wouldn't name.  He was willing to look at any results at all.  The only evidence SR was actually willing to offer was her vision with her $7.99 toy microscope.  He even offered to do FREE tests of his own on any of the 2000 MYSTERY SUFFERERS that SR claims exists.  Of course, not one name was offered and she wasn't even willing to send her son to be evaluated.  This, in itself, is a ridiculous thread and I really only read it for entertainment value.  However, it did waste Doctor R's time and anyone else who really wants to try and get to some answers.  In fact, if you read the verbiage in this thread, several different posters sound an awful lot like Skin Researcher, so I tend to think much of the posting here is from one person alone.

Skin Researcher, if you want to diagnose your son with a $7.99 toy instead of taking him in to a real doctor with years of education and experience (and for FREE!) and sophisticated equipment, then it's not your son that needs the help.
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He may not answer, but he reads. Especially after the lively disussion with Skin Researcher. He will follow this post-er till she's fallen off the bottom of the page. Still, you have to pay the piper before they'll play a tune. Meaning, it cost money to ask a question, that's what this site is based and ran on. Nothing but good ol' American work ethic....Go USA! :-)
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When ever there has been a question answered by Dr. Rockoff, you have to start a new post to get your questions answered by him.  He won't answer your question if it's been put in after all these people's comments.  Know what I mean.  Once you guys started putting in comments, he quit reading you guys posts.
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Avatar universal
Hi,

The best way that I have found to do a search is to go to this site:

www.Google.com

Put your search words into the search box and then click the "search Google" button. you can add more specific words if you want to narrow the search, i.e. if way too many sites come up.

I put these words into the search field:
Cement dermatitis

You could add a third word, to get more specific sites, such as:
Cement dermatitis specialist

or you could try:
Cement dermatitis dermatologist

Lots to read!

Best wishes to you both!
Mary
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Irritant contact dermatitis (ICD) (acute, subacute, chronic)  Portland cement; plaster; lime; epoxies; solvents; other workplace products; abrasive cleaners; alkaline soaps; hand/barrier creams; other personal care products. Skin exam; stinging; burning; pain; itching; blisters; dead skin; scabs; scaling; fissures; redness; swelling; bumps, dry or with watery discharge; usually concentrated where exposure occurs. Diagnostic aids: open application tests; do not patch test to known irritants; do not patch test to unknown chemicals. Skin exam; skin lubrication; antibiotics for infections; astringent soaks; topical or systemic corticosteroids; antihistamines; UV; wash hands at least once before eating or leaving work for the day with pH neutral cleaners; possibly add vinegar to neutralize alkaline wash/rinse water; prevent exposure; proper gloves; long sleeves over gloves; remove work clothes if soaked with wet plaster or epoxy.
This says to avoid lotions with lanoline?  He always uses creams and lotions to soften skin.  Also, Tea Tree, would be good to bathe in?  Are there more web sites with this kind of info?
Thank you so much for the lead!
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Avatar universal
Hi,

I hope you realize this is not a Dr answering your inquiry.  I am just a board poster like you.

However, I did find quite a lot of info on the net about how irritating concret can be to human skin.

See the following excerpt at:
THE CENTER TO PROTECT WORKERS' RIGHTS
http://www.cdc.gov/niosh/elcosh/docs/d0200/d000281/d000281.html

Excerpt:

"This is for a worker who works with cement to take to his/her doctor.
The patient presenting this pamphlet is a construction worker who has frequent occupational contact with caustics, acids, and sensitizers.
Please keep this information for reference in the patient's file to aid in evaluation of possible skin conditions.

Your patient is a construction worker with exposure to wet cement.
Construction workers are exposed to a number of chemicals known to cause irritant and allergic dermatitis.
Portland cement, found in plaster and in concrete mixes, is extremely alkaline. Wet plaster also contains slaked lime, or calcium hydroxide, which is even more caustic than Portland cement.
Further, Portland cement contains trace amounts of hexavalent chromium. Hexavalent chromium is a strong sensitizing agent responsible for allergic dermatitis in cement workers around the world.

Other sensitizing agents include various epoxy adhesives and sealants in addition to various chemicals present in the admixtures used with cement and plaster.

Finally, construction workers may use products such as lanolin creams or lotions to soften their skin. Lanolin is a sensitizing agent. Some industrial hand cleaners contain limonene, also a sensitizing agent. The rubber in rubber gloves also may cause allergic dermatitis.

This pamphlet contains a partial listing of skin disorders, potential etiologic agents, and possible medical surveillance.

Please maintain this in your patient's file. Sources of additional information about occupational dermatitis are printed on the back.

The  Center to Protect Workers' Rights
http://www.cdc.gov/niosh/elcosh/docs/d0200/d000281/d000281.html
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Avatar universal
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.
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Mary,

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.
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Hi,

If you go to our website:

www.Morgellons.org

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.

Best wishes,
Mary
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Avatar universal
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...
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I forgot to mention very good references to back up these statements.  Please forgive me for its length, but its quite important.

http://www.energyfields.org

http://www.laleva.cc/environment/taskforce_eng.html

http://www.health-concerns.org

http://www.electric-words.com/cell/references/radfrm.html

http://www.feb.se/index_int.htm

http://www.salzburg.gv.at/celltower/english/start_e.html

http://wbldb.femu.rwth-aachen.de/

http://www-nt.who.int/peh-emf/emfstudies/database.cfm

http://www.emrnetwork.org

http://www.wave-guide.org

http://www.microwavenews.com/



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Avatar universal
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.

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Hi Frosted,

Elidel is a topical immune-modifying agent.  This means it turns off the immune response in the skin.

http://www.elidel.com/default.jsp

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).

http://www.transweb.org/reference/articles/drugs/fkindex.html

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.

Best wishes!
SR
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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.
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Dear 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,
Fondly,
dkaz
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Avatar universal
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
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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.

Help.
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