Morgellon's is NOT "Unexplained Dermopathy"

[fracty]

I was reading something in another thread that made me just want to shout this out. I say this every day. But I think all people who work w M or have it need to be very vocal that this is not "Unexplained Dermopathy." This belittles what is really happening and risks peole's lives.

I wish it was "Unexplained Dermopathy." I could handle itching and even sores. No big deal. Sure it's uncomfortable and looks ugly, but at least them ppl are not dying, ppl's internal organs are not being attacked, ppl are not getting cancer and other secondary illnesses related to M.

The truth is the skin is NOT the only organ M attacks. It goes after ALL the organs,... and bones... and blood. So the only way to get better is to treat the whole system.

I read that awful research article when it came out in May 2009 (I forget the name and I think they made some INEXCUSABLE errors int he way they wrote their abstract and parts of the article), but even in that paper they called it a "systematic illness."

All of us must treat the internal things going on. We know it affects the digestive system - intestines, etc. We need to do things to clean it, to increase nutrient absorption, and to heal/prevent tears in the linings. We need to detox the body to eliminate teh nasties produced inside us by these things. We need to clean our blood. We need to go after all of the variety of organisms involved and clear them out frm the INSIDE of our bodies.

Finally, partway into finishing my planned detox strategies (which will take me about two years or more - metals take longer), at some point, I have some ideas I believe will attack even the latent aspects of this disease. That is my hope at any rate.

Basically, I just hope we can get rid of this MISCONCEPTION of "Unexplained Dermopathy." Skin cancer could be labeled "UD" too, but in that situation too, if the person only thinks of it as topical, and only treats teh skin it hugely lessens their chance of survival. We have to treat the SYSTEM and make that very clear to the CDC and other incompetent health organizations.

PS- Lots of ppl have M who NEVER have the lesions. The dermopathy is just a symptom that many have. If you count the fibers underneath the skin that can only be seen under microscope in some cases, then that is something I feel we all have across the board, but even that does not make it dermopathy. That is merely one of the nesting places of these fibers/worms/nanos/things.

[fracty]

And one of the most scary things of all... it attacks the nervous system.

I worked for years w ppl who had various severe mental illnesses including bi-polar disorder. It is terrifying to me to think of getting something like that. I watch for signs in myself and I know what to look for. I think it is harder for others who do not have that experience and think they are getting better but are still exhibiting mood disturbances, anger outbursts, paranoia against other ppl, etc.

This is just one more reason it is ESSENTIAL to get quality treatment from the start, before these things have a chance to develop.

[Venetia]

IMO, the skin aspect of the condition is the 'focus' because of the myriad of vendors
surrounding it. Notice how many are selling products for the skin?

The focus IS on the skin- but you are correct in saying this is a systemic condition.

~V~

[xiblanque]

Hi Fracty... sent you a message but I dont know if you got it.
I have dealt with skin and hair issues and progressed to ears and lung cleansings.... am a bit confused about treating systemicly and detoxing... I can understand how most people would focus on "Skin" solely...
I guess i really need to pore thru these threads..
xib

[tcmgpt13]

Dermopathy and its symptoms are not always limited to skin symptoms alone. For example there is diabetic dermopathy, restrictive dermopathy, nephrogenic fibrosing dermopathy, Brachioradial pruritus (cause also unknown) and thyroid dermopathy. None of these dermopathies are restricted to skin symptoms alone. Some of these dermopathies may be linked to genetics. Sometimes eyes are effected (thyroid dermopathy). I do not think that using the term "unexplained dermopathy" to describe symptoms of Morgellons necessarily means this medical term is limited to skin manifestations alone, especially as the CDC page also says that patients who report skin manifestations ranging from "cutaneous or skin symptoms including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin rashes or sores" also report "fatigue, mental confusion, short term memory loss, joint pain, and changes in vision." The latter symptoms are not skin symptoms, so I believe a much broader definition has to be applied to what is meant here by the medical term "unexplained dermopathy."

[fracty]

It hinders our cause and is not accurate. Lots of illnesses have dermopathy as a symptom but it is NOT the illness. Until the real aspects of this illness are addressed people will continue to die. Lives will continue to be destroyed. We need the REAL issues addressed.

If diabetes was only investigated and treated as a dermopathy there would be a lot of additional deaths in that area as well. We need to have the truth about this illness addressed.

[Enviro Girl]

Hey, Fracty!

If you mean me, I do that if it's copying and pasting a post intended for future litigation/journalists/petitions/national/world awareness purposes - then I send it out to my circles.

Those are the 2 most commonly recognized disease names, internationally.

I just spoke to someone researching: The first thing we need to do is the change the name. (?!!)

I was like: What?! No, no, no, no, no. Please do not try: These patients are confused and sick enough and have gone without a single recognizable conditional name, for years. Another name change is not what people need.

The Name Games are part of the CDC's UNawareness campaign trying to hide our #'s and deny us for 8+ years already.

If General Public doesn't know 'Unexplained Dermopathy' when they see it, for what might be the first time, in a PR in the paper/on TV/radio news or on a petition - good luck to them locating Morgellon's on the CDC's website/in the Corrupt AP/Associated Press, as of today - I am amazed Morgellon's is even in the CDC's A to Z disease list now and even links to the Unexplained Dermopathy page. That's their best progress, thus far!

They do all this intentionally, so I purposely combat The Name Games by using both, so the mainstream/General Public can see a 'study' is now going on.

(Prediction: If the Patent Race is over soon - the CDC is going to try to now appear to the Public as if they were truly acknowledging us all along - you watch, Fracty. Just like DOP disappeared from CDC's website in 2007 but Belle just got misdiaged w/it this week after a doc wasted her money and pretended they were going to help her.
It's very a calculated, liability-limiting chess game the CDC still plays w/Morgies. They count on us not unifying and organizing or acheiving awareness and letting them this drag out. Big Pharma would like to see Morgellon's go on 8+ more years.)

Yes, we've already explained our dermopathy, but I do this for the Mainstream/New People.

I understand that some people in their treatment/faith, are taught to not say the word Morgellon's because they feel 'summoning' calls the Morg back or something.

The 1st time I saw 'M' on here, I was confused, I think some new members are...

I'm not dissing you/others w/the 'M' deal, but I wanted to explain why I use both full names, as needed and why I was confused at first.

(I went 'Oh, $hit, 'M'??: Is that another GM strain of IT I dunno about?!')

Morgellon's is the only name that should stick. But I feel right now, we still need both.

Sick folks and the General Public/The Courts/Media need to know ONE name in order to acheive the awareness and progress that Morgies need.

The Centers for Disease Cover Up needs to get w/the Program and start calling Unexplained Dermopathy by the name Morgellon's Disease and start counting some #'s, cuz my patience w/them is about 0. It might be in the negative range since 11/04/09.

I would never listen to a word from them again after Morgellon's, I kinda fear their advice and vaccine & pharma pimpage, they are a joke to me: but I'm trying to force their hand anyway, because the naive mainstream thinks they are like, a for-real public sevice that does things to help sick people.

That almost makes me laugh, but some people are really waiting for the CDC's 'help' and validation.

They and the AMA are now forever malignant and irrelevant in my open eyes, but they need to all start doing the right thing for naive mainstreamers/their families or I'm gonna blow these pigs' houses down.

Not only are they worthless and hurtful to Morgies for 8+ years, 11/04/09 'udpate' of a panel to study the study/'stakeholders', they visibly go, right in front of our faces, funded by our tax dollars, on our dime and will hide evidence inter-agency 11/25/09, using emails from victims they refused to EVER respond to, for years - to keep the Cover Up going cuz they think we are too brain-fogged to notice and to sick to call them out.

You have no idea the rage I'm feeling over 11/25/09 evidence hiding. I just want to snap, so I had to channel my anger and go legal/make petitions/hit the press, cuz I need results from them, for the others and their families, before I will ever simmer down and shut up.

The CDC will call this Morgellon's Disease & put some real stats on their site, by the time I'm done calling every aspect of their blatant corruption out. I'll take this as far as they force me to. CAP. Citizen Appointed Patrol. I want to see some Pink Slips at a few agencies over Morgellon's. Congressional Hearing? I don't stop til The Bad Guys do on this, I can't.

Fracty, I keep giving them chances to do the right thing and they keep lettin' me down. They are forcing me to take big action, so I feel like I have to.

The Name Games - all part of CDC/AMA denial routine so the Morgellon's Disease situation could drag out and make Big Pharma more $, like the last 8+ years.

I'm using both names, for now, so none in 'power' can deny our #'s/geographic distribution w/DOP/Morgellon's/Unexplained Dermopathy & further predicted nonsense.

After all this - I think we deserve the Apostrophe, too!

[tcmgpt13]

There has not been much money assigned to research Morgellons to provide better definitions of our disease. Meanwhile the most common symptom for nearly everyone is visible fibers emerging from the skin. So until more is known through research perhaps that was the best definition the "experts" could agree upon to describe our disease. At least Morgellons has been recognized, even if it is not being researched seriously. A start, even though very unsatisfactory as far as outcomes so far.

As I discussed dermopathy usually means more than just skin symptoms are behind a disease (in other words dermopathy can mean systemic). Diabetes has some defining symptoms which are not dermopathy and indeed not every diabetic will have dermopathy. Unfortunately for us, there is no other common outstanding symptom other than the fibers which do emerge from the skin. I believe we all agree we would like to know more about our disease through "real" research not just studies. Still with the current climate of budget cutting to fund other priorities I feel private research (maybe by contacting charitable foundations) may need to be pursued more rigorously by those with "orphan" diseases. Even these sources are strapped for cash with declining financial markets and donations and questionable government policies.

[fracty]

Nooooo EG. I think the stuff you post is SO HELPFUL!!!

Additionally, you are typically quoting what the non-expert "experts" are saying.

This post was initiated because, once again, I came across a post of someone who was only treating this topically, as a skin condition. But even some of the researchers now call it a "systematic illness" and NOT "unexplained dermopathy." I've noticed that tendency increasing.

Again, the second reason I find it disturbing is because we will never get proper investigation, studies, treatments, etc. unless this is looked at ACCURATELY!

[fracty]

I don't think there is any excuse for the lack of attention to this illness.

Again, if diabetes were only investigated and treated as a dermopathy, even tho there are dermatological symptoms, the truth would be missed, more ppl would die, and the real etiology would never be discovered. We need to put a stop to this misconception. I've come across lots of people who never had any lesions yet still have the illness.

The skin is a visible organ being attacked, but to ignore what is going on internally, with the other organs, nervous system, and skeletal system is deadly and further perpetuates the inaccuracies of the medical "professionals" who dismiss this illness.