First, please, for those of you that are down and really suffering don’t be discourage. I will be posting a video on this site with me in the video speaking directly to you tell you how to cope with this disease and what we are going to do. I know there are people on the edge, hang on, you’re going to make it.

PLEASE DON’T BE OVERLY NEGATIVE, THIS IS NOT ALL BAD NEWS:

But the study shouldn’t be interpreted to conclude that the problem is all in sufferers’ heads, Eberhard stressed. Instead, it should be a baseline for future research and encouragement for patients and their doctors to work together, harder, to find a cause.

“These people are definitely suffering from something,” Eberhard said. “It has impacted their lives greatly.”

Here is a link on the CDC site proving it’s really released: CDC Website Announcing Report

The full report: Full CDC Report (Scroll Down, it’s Bigger than it First Appears)

Now, for a link to a ton of news stories on the subject: http://tinyurl.com/6wkzzmx

See this Report : HERE

Mr. C

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Comments on: "CDC Morgellons Study Finally Released" (123)

  1. Quite frankly, I expected this.

    • Did you hear Trish Springstead on radio station Coast to Coast on Tue night saying that Morgellons does exist and she was able to win a judgement against SS disability because of Morgellons, for one of her clients?. I wish she would have posted that she was going to be on so that others could have tuned in but maybe she had no set time or confirmation that she would be on. At least we know things are being done. Linda

      • Coast to Coast has a search engine and people can access the show, so it can probably be accessed. I’m not sure what the deal is with that website because I tried to listen to a show that Clifford Carnicom was on (aired Jan. 27) and the site prompted me to sign up for a paid subscription. I was unable to hear the interview.
        What’s the deal with Coast to Coast, is it only available if one pays for the service?

        • /Ayla, I do not know about Coast to Coast website, I only listen to their program on the radio at 10:00 p.m. PST.. They are talking about GMO’s tonight. Very interesting. IThey say it is world wide!!!! Linda

  2. Hi Mundane & all concerned: I feel all of us must come together as a whole Community to do anything positive & forget the past with battle scars that need to be healed, Mundane you can be a springboard to bring this about, you have the respect of all, from Cindy Casey & Company, Trisha & Company & the M.R.F. all need to work together on this issue. the C.D.C. has concluded on the issue, but I feel the fight for the right to be treated as human beings is not over by far, together as a whole Community our voice can be heard, divided I feel it will all die here & now

    • It is time to take this to a higher level….We need to get the attention of the US Dept of Heath and Human services. Kathleen Sebelius is the head of the dept. We need to continue to put pressure on the medical community. We must do this as a united group. This is no different than when Lymes disease came to the attention of the medical community, many dr’s still believe it doesn’t exist.

      • I will bring your idea to the Morgellon Conference. What I will be suggesting is that everyone send a letter to Dept. Of H.H S Kathleen Sebelius and tell them your symptoms and that you feel it is morgellons, then hopefully the Charles Foundation will agree to collect letters from individals so they will have them on file to present their case. So in other words if Cindy Casey agrees to collect letters too, it would be a start for everyone to make two copies of their letter and send one to each. I know most people are suffering and have very few finances but in order to get things accomplished one must help in some way and put some effort into the cause. We are hindered because some people cannot reveal they have this because of possibility of loosing their jobs so we really do have a tough battle but some have decided to forge ahead like Cindy Casey, who is suffering but devoting so much of her time to help us all.

        • sharoninthehighlands said:

          Linda, a very good plan. i wish we had the numbers here in Canada to confront this. Health Canada has been waiting for the CDC report.

        • What I would like to see as a first step is to develop an on-line petition sent directly to Kathleen Sebelius at the US dept of health and human services. We can then hook up with other sites that work towards helping people with Morgellons.
          The first step is to get the medical community to accept this as a disease and treat it as such. I personally am not computer savy enough to set this up, but would be willing to help with the petition if needed.
          As a final note. I feel we should stick with the Morgellons title. It is what it is.

          • Sorry to say Vel, Kathleen Sebelius is the abortion Queen of Kansas!
            She doesn’t give a rat’s behind about your health, nor mine.
            Kathleen Sebelius and Rahm Emmanuel’s brother (MD whose first name escapes me, as do most thoughts)
            are the designers of the death panels in Obama care.

            I personally prefer to keep my safety.
            JMHO.

          • Vel, I agree with you about sticking to the name. I don’t think it is wise to switch names even though it has been labeled delusional. Fibromyalgia people went through the same thing and eventually it was recognized. To switch now I think would cause so much confussion which would only back the theory we don’t know what we are talking about and we are all over the place. With the CD not recognizing it is the problem so no matter what we called it, the results would be the same but we would loose all the history. We could take a poll and I am going to mention that this discussion is going on throughout the internet at the conference.

            I don’t know how to do an online petition either but I think it would be more effective if everyone sent a letter by themselves which to me would make a stronger statement. Also there are people who do not have internet access who can be heard . Forget the President, he is too busy campaigning and looking out for his own interest along with his buddies who wanted to close down some of the herbal sites. I think we need to start getting our forces together and confront the new adminastartion if there is one. Anyway, I am going to find out what they think at the conference about finding out what person or organization that we need to attack with all our letters

      • very well put Vel Thank you

        • Patrice (Qc. Can.) said:

          I read the report, it’s unscientific to select the candidate for a study. Beside, even if they want to hide it, they talk abut possible Lyme disease contamination. I cure myself with goldtread, it works better than novo-olanzapine that my mother takes since 3 years and half. After 3 month of goldthread i’m in better shape that her… So someone can tell me since when morgellons can be treatenend better with psychiatric drug!!! All this is true and made me think that CDC is corrupted.

  3. MRC hope you doing well, I myself been very sick for past two weeks, possibly with coinfections. When I called my Dr last week
    To tell her about my new symptoms and how
    Sick I was she told me to see a “Psychiatrist”
    Well, just because they say we are crazy doesn’t mean that we are. I never trusted Kaiser
    To begin with and never had my hopes up
    In regards to this report. This is not over until
    There is some answers. Unfortunatly as more
    People get sick our case will get stronger,
    I also ask everyone to also don’t give up hope.
    We just need to get more organized and more
    Active. Another word of advise for those who do not have a Dr at their corner, consider an LLMD
    They are much more open minded and will work with you. God bless all you who are sick, as lonely as this road feels, you are not alone we are all in this together and need to stick together. MRC once I m felling better I hope to be more Of a help so I ll be in touch.

    • sharoninthehighlands said:

      JS, Regarding a Psychiarist referral. I have heard of folks actually being helped after seeing one as they are the only profession truly qualified to determine that someone has DOP. A good one will first determine that you are not delusional and go from there.
      Not that I am suggesting a Psychiatrist. LLMD is not a bad route if that is the only option. There are now holistic dentists as well. I agree with Mr C, Lynda and others that we should stop calling it Morgellons.

      • Hi Sharon, funny you say that, I m actually thinking of doing that, that is seeing a psychiatrist. I should add that I work in
        The field of behavioral health with therapist and psychiatrist for past 20 years. So I see delusional people everyday…. And but luck I did find an MD who treats chronic illnesses, including Lyme, so she is working me up pretty good, I ll share everything with everyone once I get my results back, she is an integrative MD which look at the whole picture she spent near
        4 hours to do my initial, pricy but I think it’s well worth it at this time ….I just cancelled all my other appts with my regular drs as they were all a waist of my time and money wasn’t going anywhere with them.

        • Please don’t go see a shrink.

          You will NEVER EVER BE BELIEVED AGAIN!

          Should you develop a bacterial infection, THE DOP is on your record.

          You will end up in a psych ward, you cannot own a gun, you cannot validate a legal document, you cannot even retain custody of your children!

          Obamacare is going to make it worse.

          You are about to become a unit, not a human.
          Death panels are for real.

          Wake up fellow travellers, we are in for a world of hurt.

          Physicians are NOT our friends.

        • Hi JS.
          First, to see an LLD or an integrative MD is the only route to take. I did and am almost completely cured. I was VERY sick for 6 yrs and it took me 2 1/2 yrs of recovery. I hope you are getting a stool profile done and are willing to take prescriptive drugs. You will need to put a “cocktail” together of anti-bacterial, anti-fungal and anti-parasitic, along with all the natural remedies as well. Trust me it can be done.
          Second, I would like to get your e-mail or phone # so we can begin to put this letter/petition together.
          Vel

          • Patricia Morgan said:

            Vel,
            I have time if you would like some help getting a petition or anything else done that can help us move forward. I believe also that Unity is the most important thing we can do for ourselves as a group. Staying out of the negative, out of other issues and focusing on what we can change seems like a wonderful path to choose. Please let me know how i can be of service. Thank you for the positive words!
            patricia

  4. Robin Laws said:

    My response to the CDC in an email and as a comment to their report…

    I knew in my heart… as well as many other morgellons sufferers have that your final report would be Godless, shameful, and so very disappointing. I tried to have faith in our governement… I tried to hope for an honest outcome of your study of Morgellons. But now I know how disgusting our governemnt has truly become. You hide the truths by hurting the hearts of those who suffer from your attacks on us via chemtrails, GMO foods and the like. I’m so very sickened by the greed, the lack of compassion, and as I said, the lack of truth. But it’s my heart that’s been numbed by what you’ve accomplished in destroying even more lives with this so-called study. You must truly be ashamed of yourselves… I know I’m ashamed of you all. You’ve just destroyed so many people who’ve been holding on by a thread waiting for the answers to stop their suffering. How could you… how could you be so very heartless? I will continue to hope one of you who must know the answer but are being held to secrecy over the cause of this nightmare to step up to the plate one day. Maybe you will the day you or one of your loved ones is hit by the Morgellons delusion… a delusion I might add that has been filmed by thousands of people around the world. How can that be? Because… morgellons is as far from being a delusion as you are from being truthful, compassionate, and strong. So very dissapointed in you all… but believe you me, our fight doesn’t stop here. For all who suffer… my heart is with you today.

  5. lyndaincanada said:

    Hello my friends — I believe this release is good news! As Dr. Amin has suggested about the CDC study, the CDC had a specific focus that has now been investigated. They had to finish the study they started with the particular focus they had. After one try, it is ridiculous to give up there! I’m not giving up, Mr CS isn’t giving up and neither are you! Nowhere in the report does it conclusively state that the symptoms are DOP. In fact the pictures, according to the report, are suggestive of other skin conditions: Prurigo nodularis, lichen simplex chronicas, stenotrophomonas maltophilia, stapylococcus pyogene and aureus! This looks like validation that people are indeed suffering from something — and any validation — is good! Don’t you dare look at this as a “half empty” situation – for it is not! It is more than half-full! We are well on our way to figuring this out…people are listening and are taking our health seriously. We must be credible and not succumb to negativity…ever! I would like to make a serious suggestion though:
    I have decided that I will no longer call this affliction “Morgellons” — it is not Morgellons! That term was used as a starting point to narrow the investigation of the affliction — but truthfully, we need to drop it, if what we want is credibility. Dr. Amin has identified a condition, that moreso resmbles my symptoms, much better that the original definition of Morgellons does. I don’t care what you call it — just consider not ever calling it “M” again. The term is tainted now with negative connotation — use a more specific medical term, and I am willing to bet we will see the credibility that this affliction truly deserves and requires. I am choosing to call it “Hyper-toxicity” as so many “M” sufferers are referring to it as. Look up the original definition and you will agree – we don’t have “morgellons” – but we have/did have something worth continuing to investigate. Thank-you CDC for investigating our affliction – please don’t stop there. We are counting on you. Just because we don’t have answers yet, doesn’t mean there aren’t answers out there. Has the Cancer Society given up bc they don’t know what cancer is? God bless…

    • I so agree with you Lynda about the labeling of this affliction, I myself also have not and do not refer to this as M and been using the term hyper toxicity as well which appears to fit this syndrome more appropriately. Also even though we all probably have a common cause but we all have different symptoms and co infections that does not all fit under M. This report would only make our case that
      Much stronger and let us know that we can not and should no longerwait for the Government to come to our rescue, And we are on our own. Specially the Ones who ve been waiting on the side lines.

      • Mr. Common Sense said:

        I urge everyone to scroll though this PDF. Give it a moment to load, it’s kind of big, some of the pictures are graphic and thee’s a little nudity (sorry)

        http://www.parasitetesting.com/_private/NCS%20powerpt.pdf

        • MRC, I like many others also never developed sores but I have the other common symptoms as others. Also did replace 14 old mercury amalgams which I believe it did play a part in my illness and currently still detoxing my body from all sort of toxins, because I felt better after they came off. I also did talk to dr Amin and do believe NCS may very well play a part in this but not sure if all the answers are there.

          • Debra Schackner said:

            I don’t believe Amalgam fillings are behind this at all. My dog has morgellons out of his eyes/ears and gastro system/formerly had leisons and he has never had a cavity:)

            I do believe that mercury further diminishes our immune system to fight this off but is not the cause. The cause is some sort of spirochete like protozoa..like lyme, like yaws, like syphillis. like malaria..enough research is being done to point to this.

    • I concur. We really should stop using the term Morgellons. Dr. Amin is actually the only person working on this who has openly posted real, scientific findings. His site is full of information for those who want to view it. And, he is a very experienced parasitologist, and he states this is not a parasitic problem, although he has found secondary invaders, springtails (Collembola) on people with this condition, in fact, the majority with this condition, but they are not the cause. His approach is not anti-parasitical and he of all people should know, and remember, our own Joe Keleher was made better by Dr. Amin, and not using de-wormers and junk like that.

      http://www.parasitetesting.com/morgellons.cfm

      • sharoninthehighlands said:

        Perhaps you could rename the site with a mirror from the original or a subname for example Formerly known as Morgellons??? Just a thought.

        • I differ on whether this thing is parasitic or not because I actually can get things off my body some that are as tiny as a dot and flip it in the toilet bowl and see it swim around and sometimes the larger ones, I have seen split. I believe they need air (have seen small bubbles in my stool and when I am watching my diet and doing well, see less) So I figure it eventually dies in the bowl when it drowns because of lack of air. Someone else mentioned the bubbles so until then I kepted it to myself but reading more posts has confirmed alot of stuff I have experienced like the jumping, the tiny round holes in the pjs that I wore when I first got it. I believe it is a parasite plus

          some other thing and our bodies lacking something is helping to produce what ever it is.

          • Hi Linda I experienced in the 1st 2 & 1/2 years the sesame seed things on the skin that looked somewhat crystalline & the tiny round very white spherical looking things along with small very white oblong almost worm like things on my skin. I think this should not be a major issues tho, I think it’s very important that people understand it is not just a skin problem, this Disease gets into every major body areas such as the nervous system, lymph system. I had eye & headaches for months at a time beside the memory problems & more, so to call it just a skin problem bothers me very much by giving people the wrong idea about Morgellons Disease.

            • Ddc Holiday, I did realize it is not just a skin condition because it is under my scalp mainly on the rt. side beneath my rt. ear lobe but I also have it through my body and I believe it travels through the blood and lymph system. I was just explaining the visable evidence that convinced me that it is partially a parasitic problem but I believe there are other factors and that is what makes it such a wierd disease. I feel there is a mutation involved in my case. ]

              Whatever it is, it started in my head and traveled all over my body way down to my feet. My feet were so bad that I could not walk but I finally got them (maybe not all) to move to my legs and they seems to enjoy my legs and hip area the most. I’ve had a few on my back and still have them on my face

          • sharoninthehighlands said:

            Linda, you are correct in that some of us actually see parasites and Dr Amin explains that as a secondary infection. In other words if you were’t already neuro toxic your immune system would fight the little demons off.

            • Very well said Linda, very good input that I find very important & important for the Public & Government agency to understand, thank you & sharoninthehighla

      • Mr CS, While Dr. Amin’s protocol (including the removal/replacement of amalgam fillings) certainly played a large part in my recovery, I was also doing chelation with Dr. Shelton (AZ homeopathic doc). At this point, I think the very best protocols (she has four…three post- amalgam and one pre-amalgam removal) out there is presented by former dentist/ Naturopathic doc, Alison Adams in her book on fatigue related health issues (I know I’ve mentioned this before). While the major symptoms have been long gone (crawling sensations), I still am dealing with issues of the endocrine system (low body temp and related… such as racing heart). I am using one of her protocols and also taking living clay (bentonite) three times a day.

      • Mundane, wishing you the best & thanks for all you do for the Morgellons Disease Community.

  6. I heard the outcome last night on late night radio :Coast to Coast” and the commentator believes it exists and said to hang on. We need to joined together so if you can and are able to attend the 5th Annual Conference in Austin, Tex on March 24, 25 at the Westoak Woods Baptist Church. They welcome anyone and will not turn anyone away. They are having speakers from Australia, others and Cindy will be showing a film that was made by a Japanese company who came to the US to film her and others to show in Japan. By attending you will be able to get together with others to share and get ideas. Lyn

    • Linda, how can people that can’t afford to go to Texas & their are many, be heard??

      • Linda, the other thing is all people’s from so many different Country’s like France, Belgium, the U.K. & more Please answer this, I have people from 5 different Country’s excluding Canada on my site, how will they be heard?.

        • their needs to be a reckoning like never before & every person counted that otherwise may not be heard, I don’t think Cindy can do all this & feel we need to come together as a whole entity to make any difference. …. lyndaincanada thanks for your reassurance that we still have hope, I believe the same

      • All of you who cannot attend can keep abreast of what is going on with checking in on the Charles E. Holman Foundation and reading. By reading Cindy Casey Diary, I confimed that I had made the right decisions in not going to some of the Drs. that I was referred to that save me lots and lots of money. You can also register with Oklahoma State University which is doing research on Morgellons so you will help advance Morgellons Disease Research by providing essential data directly to those seeking a cure but please be very selective in what you send for they do not have time to sift through stuff that is not pertinent to the research. They know about most of the usual stuff. We do not want to hinder and discourage those who are trying to help by trivial stuff. On the Charles E. Holman Foundation site you will see the Oklahoma State U. logo and you just click on there for more information.

  7. Mother Jones said:

    Hell on earth. Crimes against humanity. Thank you CDC. .How can any of you lay your heads down at night on your fluffy pillows and sleep, knowing what you have done to us. We are now considered “throw aways”, or “collateral damage,” Well money can buy almost anyhting in the world. But remember that one tiny little thing called KARMA.No amount of money will save your souls come judgement day. Sweet dreams you evil doers, your “hell” awaits you and you can be sure it will be tenfold what ours is.
    As for us, we will use this bullshit study to make us stronger, fight harder, stay united. The gloves are off.

  8. It has been a long undeserved wait. We, as a group and individually, have a strong voice. I suspect those really examining this research will put equal time into examining comments. My advice- leave yours! Our words and actions could unveil the truth.

    As for the term Morgellons, I may stand alone…but I like it (it’s a history thing).

    • Joe, I agree with you about the term used to define this disease? For one thing it is already too engrained as morgellons. We are having the 5th Annual Morgellons Conf. , There is the New Morgellons Order, Fox news has already put out an article naming the 5 rare and crazy diseases (disorders) and Morgellons made number 4. After reading about the others, I felt I would rather have morgellons, especially now that I am over the nightmare of the worst part of it. I know people who have fibromyalgia and they are in worse shape than I am but I know that we all have different degrees and symptoms. I’ve come a long ways and would not want to go back to when I first had this so I pray for all of you that you are able to get beyond the beginning stages. I know my Heavenly Father helped me when I was in my most desperate time so I pray that he helps everyone who is afflicted with this. We must keep the faith!~!! Linda

  9. dividingcricker said:

    dr don huber is stirring up the other countries maybe it will have to go through the un to make these corperations stop. i dont think the cdc even if they could would say anything negitive. the money behind this is maybe bigger than the we can understand. i know this site has many smart educated souls that have a duty to comeup with a cure. no cure yet but just some relief. my relief started with a glutin free diet (dr john symes aka dogtor j) this site has many answers to your health problems. a organic switch is another good move. i just finished a book seeds of destruction . very good reading. shows the time line when all this started. also a set dvd cd and book seeds of deception . read some very bad stories about india . this bt cotton could be what is behind all this misery. just think how many things have cotton its mind boggling. money paper qtips newspaper toiletpaper eveything thats touching us .

  10. re: bt cotton or whatever possible agrobacterium…maybe our hope of hopes would be in probiotics…and possibly salt soaks as i believe the afore mentioned lady i met back when i contracted m had suffered w/ m symptoms she said for 5 years,claimed to have been “cured of m symptoms” by getting in the salt pool on a cruise.i’ve been told by a few over the past 5+ years in my surviving m that the m cure is something simple.maybe so…gayla

    • Believe me, the answer is not a simple one. The probotics are good but you have to realize that any time you take antiboitics or even natural herbs that fight bacteria, etc. they may also be attacking the good cells, etc. so It does help to load up on the probotics. Soaking in the salt water does bring relief but believe me it does not kill them inside. My story along with a few others that have had it for 20 years or more will testify that it goes into remission and you think your are cured. I got it in 91 and thought I was cured after 3 months but only for it to reappear with vengence in 09.. My believe it is like cancer, lymes, or shingles. Your treatment can keep it under control to give you some relief in order to live a more normal life once you get it to a certain stage. The diet being very important,!!!!!!

  11. dividingcricker said:

    i tried salt baths i used solar 50 lb solar salt about a quart i do waterconditioning for a living a bag costs about 6 or 7 dollars. use the solar usually in the blue bag. this salt is evaporated in large metal pans so if you see a brown chunk of something weird its usually a piece of metal. i used salt baths for about a week when symptoms first started 4 years ago. i also tried the salt vitiman c lymes cure . i tried that for two weeks . i couldnt take that salt and drinking all that water . was over the top. ps this cdc revalation is the same as every dr every government agenct and every corperation they will never admit because of the lawsuits and litagation it would be mind boggling. this gmo nanotechnology is so interconnected that …. well you fill in the blank. a friend of mines daughter is working on a new plastic wrap for the meat industry . it kills all the bacteria that the last wrap didnt kill(nanotechnology) a whole new way to treat disease, its all nanotechnology. i mean if your wife or kids or husband had the dreaded disease and this new cure worked would you throw them under the bus. now i know were all suffering but i can see the bigger picture but my other problem is i can also see the grey goo (look it up)

    • Funny you should mention the plastic wrap because when I first got this over 20 years ago, mine started with lice. The lice ended up moving into my scalp, then I had these small white fibers coming out out of my arms. I did not have a computer at that time so I was thinking it might be a box mite or something so tried to do research at library since got no help from Drs. (The idea that lice embed in the scalp got me labeled as psyo.) Anyway after 2 months I figured that since I had lice and they have to breath I needed to cut off their supply. It was winter time so I put vaseline all over my body and wrapped myself with saran wrap. Left it for 2 days and by the 3rd day it was gone. (I thought I had cured myself) but only to reappear in the summer of 09 with vengence. Since it was summer the same technique did not work because the vaseline would melt and the lice worked out of the saran and hid out in my ers. I ended up ingesting the lice at one point and that is when I realized I was in deep doo doo and needed professional help. Of course again I was label dop

  12. I left a couple of messages with the CDC report. Here’s the one I submitted this morning titled CONSIDER MERCURY-

    My name is Joe Keleher. Professionally I am a teacher, writer and archaeologist. I had symptoms from the Morgellons symptoms set and documented my recovery (Keleher 2008a). I noted patterns found in Kellett’s 1935 article and investigated connections between historically documented Morgellons symptoms and mercury exposure ( Keleher 2008b). The article “Rethinking Delusions of Parasitosis” follows possible connections in DOP accounts. I believe these symptoms relate to biochemistry and a change in mercurial species within the body; inorganic mercury (such as related to amalgam fillings) cannot pass beyond the blood/brain barrier while organic species can (further discussion in Keleher 2011). “Approaching Morgellons: A Former Sufferer’s Perspective” was also published by the peer reviewed medical journal Explore! (Keleher 2012). Researcher can contact me through my website: jwkeleher.com. I also present related materials on morgellonsjoe.blogspot.com . My thoughts and prayers go out to those still suffering.

    Mentioned Publications:
    Keleher, Joseph W. “Hell and Back Again” Explore! 17. 4 (2008a), http://members.cox.net/ll… . (Accessed 8/23/11).
    Keleher, Joseph W. “Patterns in Early Morgellons Disease Considered as Effect of Mercury Exposure.” Explore! 17. 6 (2008b).
    Keleher, Joseph W. “Rethinking Delusions of Parasitosis”, http://morgellonspgpr.wor… (accessed 10/19/11).
    Keleher, Joseph W. “Beyond the Barrier: A Hypothetical Model for Cause and Progression of Morgellons Disease”, Explore! 20.5 (2011).
    Keleher, Joseph W. “Approaching Morgellons: A Former Sufferer’s Perspective”, Explore! 21.1 (2012).

  13. Just sent this off to the White House, maybe some here can add & refine it as a petition thank you>>>>>Dear Mr. President Please hear me. I’m one of over 200,00 people that suffer a hellish new Disease called Morgellons Disease, this Disease has been ignored & sidestepped or dismissed as Delusional witch has been a heart break for the thousands of people the suffer a Hellish nightmare & some have committed suicide because of the painful nature of the Disease, in the attempt to save their Loved ones from becoming infected, thousands isolate themselves in order not to infect close friends & Family. I feel the Medical system we have is broken, many with this Disease have been Victimized not only from the Disease but from Doctor’s that have treated them in a less then humane manner, I along with many others have been chastised because we have painful sometimes disfiguring symptoms that manifest outwardly with painful lesions as you might see in a diseased person from a third would Country, Morgellons Disease just doesn’t effect the skin but the Body as a whole, seemingly parasitic in nature it attack’s the nervous system,Lymphatic system & more, symptoms besides painful disfiguring lesions, Fatigue, eye problems, eye pain /headaches for months at a time, cognitive problems & so on. the reason I feel the health care system is broken, to get past the bias from Doctor’s I would like to see a law enacted that requires Doctor’s to long all unknown symptoms in people they don’t understand directly to a C.D.C. Database so the C.D.C. can get real time reports of unknown or misunderstood Disease so it can be dealt with swiftly & correctly rather then the long process of the need to write their Congress person with a dragged out process that is truly outdated by far, one of the things Morgellons Diseased people deal with having to hear their Doctor’s tell them oh! that couldn’t happen here, maybe in a third would Country but not here in the Great Country the United States of America where I was born, my parents were born!! the thing they don’t understand is the third would Country of people have been coming to the United States for 1/2 a century & with them the Disease of the Country’s they come from!!. Have we learned nothing from History??, when people migrate it’s a fact they bring new Disease. Please Help us, the 200,000 plus people suffering in silents, I am so upset & disgusted we should be forgotten, shame on the politic of Doctor’s & more that keep us in silents. Sincerely: http://youtu.be/BQR5z_omnhg White house link in case folks would like to do the same–http://www.whitehouse.gov/contact/submit-questions-and-comments/old2 maybe a mass mailing would help???

  14. Dbra schacjbr said:

    Well said..but the general medical community at large won’t accept this as viable disease when the CDC has dismissed it which it has. We need the researchers and doctors here and worldwide that are behind this to compose and sign a letter stating facts of what in fact has been found already–agrobactrium tumfaciens, fungus’ –fusarium ….etc. We need statistics to indicate that more than 11,000 families are registered with Oklahoma State University alone and that a sample of 115 was nothing. eceessary that their study only focused on handsis for good blood bworldwide answer. We need to respond that they did not check in with t
    nor does it reflect unreported cases. And that the CDC’s study sample of 115 Northern Californians is not representative and nor is 500 or 600 K considered alot of money for medical research. We need together the same rebuttal and email and fax it to every reporter who was biased in their reporting which is mostly all. We shouldso also include some photographs.
    The CDC’s study blindly states this is no contagious based on what–whole familes have it as well as their pets.
    . We sadly have 334 news articles, not including tweets which has now confirmed the characterization that this is a figment of the delusional minds

    • The C.D.C. doesn’t even have the real numbers of people with this Disease that’s why I made mention by law for Doctor’s to log into a Database to get real numbers & the C.D.C. took 115 people or so that was culled out of only two year’s witch is totally absurd, I feel if enough letter’s are sent to the President he has the ability to help change laws intern we just might get the right thing to happen, it doesn’t take much for people to write & express how unfair it is for a population that suffers so much, do you not think it’s worth 5 mins. of time for people to do this in their own way?.

      • I wounder if the C.D.C. is playing politics for Doctor’s that may worry about being sued by all the people that have been wronged. I feel your right on that issue http://www.stonybrook.edu/biochem/citovsky/index.html .thank you Dbra schacjbr

        • Doc I hear u my friend, I feel your pain, but I really don’t think anyone s going to listen to
          Anything we have to say about all this, we appear insignificant in their eyes, unless someone high profile gets involved or we have
          Massive numbers I m afraid no one will hear us, specially after this report. I m still wondering
          What happend to all the organizations that
          Represent this illness, such as MRF, OCU, Holman foundation, and others who have been
          Sitting out there quietly….

    • lyndaincanada said:

      I agree “the general medical community at large won’t accept this as a viable disease when the CDC has dismissed it which it has.” Which is why I wholeheartedly believe the “M” term has to to be dropped now. Ramona at Healing Grapevine suggests the same…We are not dealing with true Morgellons…it is misleading. We are all suffering from hyper-toxicity on various levels…We need a strategy update that involves the updating of the name…Hyper-toxicity already has credible medical practitioners backing it up…

  15. Thank you J S it’s year 8 and not as bad as it was, I have people on my site that have been in a suicidal mode that’s what is hard on me now, or the 23 year old that sent me a letter wondering what to do, the 4 other site’s I belong with frantic Mother’s & Farther’s at wits end worried about their children is what gets to me, sorry it’s been a long busy week JS, be well my friend.

    • On Mel’s site he has a 16 year old that wrote in and said his life has been turned upside down, plus a single mother with 4 young kids who all have it and is desperate for some relief for their pain. Cases like this, I don’t understand why the Drs can just label them delusional. My prayers go out to them and I want to help them by trying to be a voice and that is why I want to attend the conference. Also even though my 10 year old granddaughter does not show any signs of this disease, except she got lice from a neighbor girl and that is when I got the lic., She was with her Dad and came back with a pimple below her lip. I asked her what happened and she said she got bite by a mosquito. Well that was back in July of 09 and the pimple is still there so my suspion is she has M. but it is dormant. I relate M. to cancer or shingles that stays dormant in ones body and something triggers it to come out.

      • I also have met several people on line who email me frequently mostly parents who both their kids and themselves have been suffering with this Afflication for a long time who have no resource or any support. Which I have direct to these web sites. Unfortunantly all I can do is to be there for them to listen to their cries and keep them hopeful. My Point of this post was that there are so many people who are sick with this who have no voice which are out there, or many who think they have scabies or some kinda bird mite so the numbers as Doc said is
        A lot greater than CDC trying to down play.

  16. Hopefully you all realize that we can not get the help we need as individuals. We need to work on this a a group, there are powers in numbers. This truly has not been done. I have been monitoring many sites for two years now and have yet to see a focused united front to get the answers we need. Until this get’s recognized as a disease and the medical community does some REAL research (not useless skin biopsies), we will continue down this path of basically nowhere!
    I am looking for a few good people to work with me on this. We are all angry, but unless we focus on step by step process to get the help we need and deserve, it will never happen. We will never agree on everything, but that is okay. Diversity and different ideas are good.
    Let me know
    Vel

    • As I mentioned b4 I will help everyone anyway I can, please let me know what I can do to assist, I agree that we need numbers ….

    • Vel,
      I should have told you that I am on board in helping. Maybe we can get each other’s E. Through Mr. C/S and anyone else who would like to do the same. In other words, we can keep in contact directly with who ever decides to form somewhat of a committee, especially about getting this recognized as an authentic disease.
      Actually the announcement by the CDC which was posted in the paper and on several radio and TV stations here in North Ca/ gave me a chance to share with my Church group that I had it and it was real. When I did that the lady next to me said she had heard about it because she thinks her girlfriend has it because she was complaining about the same sympthomes but could not get a diagnose from a Dr.

      • MR CS,
        If possible, could you share my e-mail address with Linda ,Patricia and PS to begin the process of trying to put a petition together.
        Vel

        • Guyz count me in, I help anyway I can, once I m a lil bit better, I live in southern Cali, just got a new doc who is doing extensive testing on me, so MRC please share my email with whom ever u feel it’s safe. Thanx

  17. Dr. Raphael Stricker strikes back >>>> http://sfappeal.com/news/2012/01/sf-doctor-cries-foul-on-cdc-report-suggesting-skin-disease-is-imaginary.php thanks JS seems you have your hands full also, be well & God Bless

  18. If you look at the manuscript submission guidelines of the online publisher of the CDC study it states submissions typically take around a month. Take a look at: http://blogs.plos.org/everyone/2009/07/14/ask-everyone-length-of-the-review-process/ Has anyone heard why this gem of a report took so long?

  19. dividingcricker said:

    some ideas… we need a new DECLARATION OF INDEPENDENCE from gmos and nanotechnology…. we the people—– Einstien said if the honey bees die we only have three years to live. we need a spoksperson that has the same fire that our fore fathers had. They signed the declaration and by doing so signed there death warrant. Right now i feel were like the tower of babble.i think all the answers are right in front of us but many sites are so much disinformation Dr Don Huber knows … Read all he has to say. Only america is turning a deaf ear to his knowlege. Only the american government with all this evidence is still going foward with more crazy stuff . well just my ideas for today

  20. Hi folk’s I had this on my site & thought it interesting thank you http://www.jonimitchell.com/library/view.cfm?id=1996 Please read

  21. Encouragement.

    The ‘real’ work is being done ‘NOT’ by the CDC.
    Know that God is control of the real work being done.

    One of the practitioners that is known for working on Toxic disease such as morgellons, worked for the CDC in his younger years,and has little respect for the focus in their work.

    Please listen to the following recordings and know that those working behind the
    scenes are working ‘still’ and making ‘progress’ to find answers.

    They do not base their views on the CDC,and the CDC in fact sends some of the people to these practitioners.

    http://www.blogtalkradio.com/pamcrane/2011/10/14/lymes-morgellons-autism-which-tests-work-why

    http://www.blogtalkradio.com/pamcrane/2011/11/03/dromar-amin-timeline-disease-toxens-parasite-whos-first

    http://www.blogtalkradio.com/pamcrane/2011/05/19/1-step-blood-test-discovers-protozoa-under-biofilm-structure

    Joe ,I agree, Im sayen in comparrison to the work I see you do i regards to research and the other practitioers who study Toxic disease…..only one month for approval????when you think about that,anyone could do that …hey..

    So what does that tell us?

    Like Joe imply s ‘shoddy not so serious reporting’by CDC,why would we depend on the same same same that does nothing nothing nothing.,over and over and over.
    Much love to all of you, and especially hugs to console those who do not know that the world does not revolve around the CDC/Government/or specific groups, but instead belongs to the Lord our God.
    He has empowered those with wisdom and knowledge that He wishes to use to help us.

    He never fails!

    Blessings

    Pamela Crane

  22. dividingcricker said:

    some good news monsanto is pulling out of germany todays news the eu has rejected the gmo lie and that is a step in the right direction. another good web site to go to SIZE MATTERS nanotechnology rice university alot to wade through but gives the reader a sence of the mountain of technology thats brewing. would love to know if any other research with cleansing the body from within using enzymes or alcohol .i think dr don huber is making a big impact across the world … hes the only researcher with the balls to stand up …hes drawn a line in the sand.. would be nice if our own government cared

  23. sharoninthehighlands said:

    http://www.naturalnews.com/034824_FDA_scientists_hacking_whistleblowers.html
    Sorry I don’t know how to make this a link. It used to be automatic. But here is another alphabet agency run amok. Story from the Health Ranger at Natural News.

  24. dividingcricker said:

    was looking at afew of the www. sites last nite posted here about dental epoxy causing morgellons could be but what about the farmers in india reacted almost in real time couldnt even last the day(seeds of destruction) i dont think they had filling material causing there reaction. was thinking the epoxy filling and the coating before the filling material is put in could be one and the same nanotech germ killing nanotech stuff thats in the bt cotton. this nano is either blasted in the seed or a seed coating that is absorbed throgh the root up to the fruit or flower. its designed to kill insects, causes the intestins to break down. it not only kills the insect it also attracts insects. this is the bee and butterfly problem…

  25. I never had any of the newer fillings in my mouth. Only the old ones with mercury. Also, a friendly dentist gave me a glass tube with some mercury in it for being “good” during a visit. I loved how it broke apart into tons of little tiny balls then merged back together into one solid ball. Now, I wonder if that contributed just a tiny bit to the miserable condition I have now. Of course, I have a list of probably twenty things that may have contributed if we are to believe maybe half all of we read. I posted that SF News article on my Facebook page. Maybe others might like to do that. It’s a small way of making more people aware, even if its just letting people know that there IS a debate about the disease!

    • Marsha, It seems a lot of us played with mercury when we were young. Mercury exist in many species. The organic species are the most dangerous (methylmercury is most common). Amalgam fillings and such are inorganic…but with introduction of right ingredients can become organic (The Barrier Theory is presented as possible cause of Morgellons symptoms in Explore! 20.5). Organic species can and do move beyond the blood/brain barrier while inorganic generally do not.

      • Thanks for the response, Joe, I didn’t know that about mercury. If there’s one thing I have learned about this disease; it’s that there is always something new to learn!

  26. dividingcricker said:

    still trying to make the connection between cattle having mega stillborns heards of sheep dieing from eating bt cotton stubble in fields. a unknown virus ( dr don huber ) describes in his interview with dr mercola and 200,000 india farmers committing suicide . many toxic connections but we consume or come in contact daily with all this stuff for or whole lives with no morgellons then all of a sudden we have something that is over the top. mercury , well we handled it in our biology class in school dont know anybody that had morgellons back then. had mercury fillings all my life, you tell me there toxic read a book mercury free the body does react but why all of a sudden and all over the world … just doesnt add up… it has to be the bad seeds the nanotechnology…the mix

    • I don’t feel Morgellons can be reduced to just one thing— be it heavy metal poisoning /toxins or allergy to dental materials. Maybe those are elements of the problem in that the body is overloaded with substances it cannot process or discard, but the issues seem more complex to me.

      Nancy Guberti, my nutritionist tells me she has seen more than 20 test results with the classification of “Non-human parasite taxonomy unknown” come up in Metametrix’s DNA stool sample. She is also seeing “Unknown fungus.” These results are common to our community only. Also, the results from people who have taken the Fry lab test are coming back positive with protozoa.

      An acupuncturist who has Morgellons has said that in chinese medicine a drop in core body temperature is an indication of a pathogen.

      I feel like the only sane way to study this is to have a core group of people with different specialties looking at the problem from many angles and communicating with each other.

      • Ayla,
        I agree with what you said about parasite and Fungus. I already explained about parasite in prior post but I have to also say that I definitely know there is fungus involved too with my own experience again. My left big toe nail had a small narrow strip of fungus for a long time, maybe even before I broke out with the morgellons in 09 (never had it before when I got it over 20 years ago) but about 3 months ago now, my right big toe nail, the whole thing was black and blue and I never did notice it right away but knew it was not there when I did break out because they were in my toes and legs and I always paid alot of attention to that area. After I got it out of my feet, I never paid much attention to my feet after that..

        I also agree with you in the way to approach this problem. The big stumbling block is that there is no money for research because most people who suffer from this disease are broke because this has required them to spend everything and more in order to even get to a comfort zone let alone a cure. We must try to do what we can to help everyone and still support if we can those who are trying to do research and get attention to our cause. As I mentioned before, the people with fibermyalgia went through the same thing so we just need to also keep the faith and hopefully we will have a break through too. Going to the 5th annual M. Conference I hope to bring out some of the things that were posted on this site, especially that the M. communtiy is split on whether to continue to use the name given to this.

        • Linda,
          I feel that you are somehow connected to the conference people. Have they considered inviting representatives from the Labs that are currently doing research? Metametrix, Fry and Great Plains.
          Also, I would suggest the the conference organizers send a personal invitation to each and everyone of the “DR’s” involved in the CDC study.
          Vel

          • Vel, I have no connection to the Morgellons Conf. or any other organization. I heard about the conference from another Morgellons suffer. I just feel it is important to share with everyone anything that can help them so that is why I put the information out even though I know many cannot attend because of hardship. It gives people hope that there are people like all those putting on the conference,. I am going for the first time so I do not want to appear that I am trying to tell them what they should do but I just want to bring the concerns I have heard on the posts. They are having spearkers, some are Drs. Some are dermatologist, and they will be having Randy S. Wymore PHD Director of Okalahoma State University Center for the Investigations of Morgellons Disease. We will get it straight from the horses mouth wheather or not OSU is out of funds. Imagine they don’t have much through since they do not get other funding.. Plus the speakers are coming from Australia and the one from Candad is a microbiologist

      • Ayla,
        You are 100% correct regarding the results from Metametrix. Bacteria, fungus and protozoa. I had the test, it showed this and I treated it. It can be done.
        Vel

        • I’m treating for all the things found on the Metametrix tests and am in remission. However, that doesn’t change the fact that I still have the disease. I’m just not crawling/itching. I feel that whatever this thing is, it’s still chugging along in my body and doesn’t go dormant like herpes does. It’s like waiting for the other shoe to drop.

          • Ayla,
            I do not know how long you have been treating the Morgellons or how long you had it before treatment. But what I can tell you is that it takes time to break this down. My guess is for every 2 yrs of Morgellons, you will need 1 yr of treatment, so be patient. I am curious as to what you are taking?
            Vel

            • I wish our docs could get in touch with one another, they would certainly benefit from
              Each others experiences and knowledge.

      • very well put Ayla

      • I hope no one thought I was saying that I thought my playing with mercury, or having the old dental fillings caused this! I’m of the opinion that it is a combination of many things. I think that it could have slowly developed in some of us, over a long period of time, as our bodies were exposed to more and more chemicals, and now GM foods, and clothing. Those of us who have had Lyme Disease or other events that lowered our immune system may be more at risk than others, and maybe not. What really gets to me, is to look in a simple microscope, see things that I KNOW should not be there, and yet doctors claim its all in our heads! I’ve asked other people to look through the lens of my microscope and tell ME what they see there. Guess what? It’s always what I saw. So, is this so big in nature that doctors are willing to lie and make people feel like fools for coming to see them for this? I know the big pharm and food companies feed us and inject us with tons of things that should never be allowed in a human body, but this is getting bigger all the time, and yet there is all this denial.

  27. I think Dr. Amin has shown a convincing connection between dental adhesives and these symptoms (though other toxins could also react with mercury). They may be the means for a shift from inorganic to organic species of mercury.

  28. http://youtu.be/FFeHIXGT0To Parasites The Invisible Enemy
    By Caroline Carter and Bobbyjoe Holliday in Morgellons General conversations- anything is welcome · Edit Doc · Delete
    This is a copy of an article I recently published in our local newspaper.
    While not written for morgellons sufferers, all morgellons sufferers harbour multi parasites.

    Most people believe parasites are only a serious problem in third world countries, but nothing is farther from the truth.

    Scientists have identified over three hundred types of parasites thriving in Europe and the USA today, including but not limited to the following: pinworms, tapeworms, hookworms, ringworms, whipworms, roundworms and heartworms.

    The USDA tells us that the average cubic inch of beef contains up to twelve hundred larvae.

    It is estimated that over seventy per cent of Europeans and ninety percent of Americans suffer from parasites and don’t even know it.

    When symptoms appear, the worms/parasites have probably been in your system for over a decade!

    Worms are the most toxic agents in the human body. They are one of the primary underlying causes of disease and are the most basic cause of a compromised immune system.

    Parasites are scavenger organisms living within us, aiding many serious health ailments to develop, including cancer.

    Parasites thrive in the intestinal tract, liver, pancreas, and brain where they become “obese” when fed their favorite diet of sugars, processed and junk foods, toxins, and excessive carbohydrate consumption.

    The danger of these uninvited visitors exists in that they become extremely toxic and even deadly, as waste materials are expelled into the host body, their eggs hatch and larvae grow in tissue all over the body.

    What do Parasites do to us?
    Parasites eat and eliminate wastes every day. They not only eat our food, many eat human tissue. They also can eat the protein coating on your nerves.
    Endo limax nana is a parasite that has been found to eat the calcium off our bones causing forms of arthritis. Entamoeba Histolytica can get into the liver, the lungs and the brain.

    Immature forms of a worm called round worm, also known as ascaris, can get into the lungs and are one possible cause of asthma.
    Many cases of chronic anemia can be from a parasite called hookworm, also known as necator americanus. This parasite attaches itself to the lining of intestines and bites into our blood vessels. It is capable of drinking an enormous amount of blood everyday. Hemoglobin levels as low as 15% of normal have been found in people with chronic hookworm disease.

    Experts now feel that even seizures may be caused by parasites or even worms that can get into our brains.
    Many prominent physicians agree; that in human history, the parasite challenge is likely the most unrecognized of all endemic problems. Because they cannot be seen and rarely present immediate symptoms, they remain invisible as a cause or contributing factor to what can be a serious disorder.

    Testing for Parasites

    It has been determined that the average hospital or lab is only able to catch 20% of the actual cases. Over 1000 species of parasites can live in your body and there are tests available only for 40 to 50 types.
    This ends up being a 1% accuracy. This is why we can have such an epidemic and it is going unnoticed.

    While it is may be difficult for conventional testing to uncover a parasite infection, our high powered specialist microscope can detect these parasites within minutes using live blood analysis.
    Symptoms of Parasites:
    The word parasite comes from Greek meaning “one who eats off the table of another.” Parasites eat and live off the food we consume, even our health supplements. They leave us the scraps. They often make us feel that we are not getting the nutrition from our food or that something is missing.

  29. Mr.CS, I felt such a let down re: CDC report……they now confirm why I isolate and have not told many people of my struggles with this..
    I then was reminded of the “smoking gun” (NIH..page ….http://www.morgellonsexposed.com/nih1Q42.htm#NIH:_Morgellons_officially_recognized_as_a_disease
    and believe they took this page away to protect (? who) and hide the truth from the unsuspecting public. I now fear this is much bigger than any of us could imagine.

  30. dividingcricker said:

    msalle i feel terrorized i looked at this site before i had any problems and now i view this in a much differnt light. i guess if you want to kill a peoples sprit this would do it the grey goo is alive and well and on track to do its job…. godless bastards

  31. CBS News airing program on Omar Amin Phd and NCS on Tuesday nite at 10pm
    Neurocutaneous Syndrome and Morgellons

    http://www.kpho.com/story/16666981/cdc

    Very nice. Good Press.Sound Science.

    We know that each case with Morgellons is slightly different.
    But all present with Hyper-toxicity and Fungal involvement.
    I do not believe that Omar Amin Phd is saying ‘All’ Morgellons patients have ‘Only’ Hyper-toxicity from Dental products.
    Because Omar Amin Phd is a Parasitiologist, I believe he is aware that because of the Toxic state of NCS or Morgellons patients that the body has become unable to move
    the toxins out.

    The body has then developed Fungal involvement,in some cases bacterias,and in other cases an external parasite.
    As is evidenced in the work by Nancy Guberti CHN,by her ‘Functional Medicine Testing’ done on Morgellons patients.

    It is my own personal belief that Dr Fry’s,’ Protomyxzoa’ which is a blood based newly discovered protozoan ,also needs to be eventually dealt with,and which comes into remission when all of the above are controlled dealt with or eradicated.

    Our health and welfare are not based on the CDC, the Government,or upon Foundations which really say or do nothing.

    It is driven by the Lord our God,and the wisdom and it’s responsibility given to good individuals who will move sound science to help those in need.

    Congratulations Parasite Testing.com and to you Omar Amin Phd.

    Blessings
    Pamela Mae

  32. Thank you for your inquiry to CDC-INFO. In response to your request for information on CDC’s study on Morgellons Disease, why it took 6 years to complete and why only 115 people were part of the study, we are pleased to provide you with the following information.

    The CDC study of an unexplained skin condition (commonly referred to as Morgellons) has been published in the Public Library of Science (PLoS) One. On the CDC website, there is a link when you can click to view the full report.
    http://www.cdc.gov/unexplaineddermopathy/publications.html

    CDC has a new website dedicated to Questions and Answers about the study.

    Information on why the study took a long time to complete is addressed in the following section of the Questions and Answers page:
    http://www.cdc.gov/unexplaineddermopathy/qa.html#long

    Information on why 115 people were part of the study and how they were selected is explained in the following section:
    http://www.cdc.gov/unexplaineddermopathy/qa.html#included

    Morgellons is not a recognized medical diagnosis. It is a term commonly used for an unexplained condition that CDC studied and found no infectious cause or environmental link. If someone you know thinks he or she has the condition, tell him or her to see their health care provider for a complete physical exam.

    For more information about CDC’s study on Morgellons Disease, please visit the CDC website:

    CDC Study of an Unexplained Dermopathy
    Center for Global Health
    http://www.cdc.gov/unexplaineddermopathy/

    Questions and Answers: CDC Study of an Unexplained Dermopathy
    Center for Global Health
    http://www.cdc.gov/unexplaineddermopathy/qa.html

    Any links provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization web pages found at these links.

    Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call 1-800-CDC-INFO, e-mail cdcinfo@cdc.gov or visit http://www.cdc.gov if you have any additional questions.

    CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Vangent, Inc. under contract to CDC and ATSDR.

    ———————————————————————————————

    Please visit CDC-INFOs Customer Satisfaction Survey and tell us about your recent experience with CDC-INFO. The survey results will help improve our services. The address for the survey is http://www.emtservices.org/cdcinfo/en/email_satisfaction_survey.htm. Thank you.

    FC 7261/dp

    [THREAD ID:1-27QAOI] [SR No.:1-133942662]

    —–Original Message—–

    From:
    Sent: 2/1/2012 03:30:08 PM
    To:
    Subject: the study on Morgellons Disease & the system people can’t rely on

    To all Concerned: Can you tell me please why the Medical system in the United States is Broken?, I feel that Doctor’s should by law have to log all unknown illness & Disease symptoms into a C. D. C. Database so the C. D. C. can get unknown illness & Disease information in real time also be able to see clusters or patterns as they emerge in order to have the ability to react before the Illness & Disease becomes a big problem & the system as we have today is too lengthy, it took 6 years!!! to get to the study for Morgellons Disease that was done so hazardously I find rediculous. I also think the amount of money allotted to the C.D.C. for that study should have been adequate for a study on the subject of Morgellons Disease. I find it very hard to swallow the legitimacy of the C. D. C. Dismissive’s of this Disease ( Culling only 115 people from only two years, from 2006 to 2008) I find this amount of people in any legitimate study unconscionable & unworthy to be called a study, why wasn’t the numbers right for the study out of thousands of people & only 115 Culled from only 2006 to 2008 how could you say this is a broad cross section of people from the people infected??, the Morgellons infected in the United States alone were in the thousands, am I making sense please?. I would thank you all very much if all these questions can be adequately answered.

    • I would like to know why the C D C calls Morgellons Disease unexplained dermopathy as the disease effects total Body systems such as fatigue (70%)
      sleep disturbance (60%)
      muscle aches (71%)
      joint pain (69%)
      hair loss (63%), and
      neurologic symptoms such as difficulty finding words (64%) and decreased memory (59%).
      Other illnesses that had been previously diagnosed by a physician and were reported by patients included
      hypertension (39%)
      allergies (30%)
      arthritis (32%)
      infectious skin conditions such as scabies (20%), or
      psychiatric illnesses including
      depression (32%)
      anxiety (19%) or
      attention deficit disorder (9%). please change the name of the Disease please as it does not fit what so ever. Thank you

      • Doc H., In response to your statement for them to change the name of the disease, the CDC did not name it. Morgellons is a name given in 2002 by Mary Leitao to a proposed condition referred to by the CDC as “unexplained dermopathy. Mary Leitao had a son who had the conditions. Often diseases are named after a Dr. who discovers it, like Hashimoto’s disease, Addisons disease, etc.
        Despite the lack of evidence that Morgellons is a novel or distinct condition and the absence of any agreed set of diagnostic symptoms, The Morgellons Research Foundation and self-diagnosed Morgellons patients were the ones who successfully lobbied members of Cong. and U>S> Gov.’s CDC to investigate the proposed condition. Back in 2010 the CDC stedd that while it is not known at present whether the condition represents a new disease entity, or whether persons who identify themselves as having Morgellons have a common cause for their symptoms share common risk factors, or are contagious, it has begun an epidemiological investigation of the “UNexplained Dermopathy (aka “Morgellons)” One good thing about their investigation report is that it did say that it is not contagious. But I look at it as “of course, being delusional is not contagious” so if they still think that is the cause then they are safe in saying it is not contagious.

        • the term unexplained dermopathy was given by the C.D.C. not Mary Leitao I believe, this is what I was bothered by Linda, I’ve been round for over 7years now. I understand the story by Mary Leitao I .heard many years ago & know about the seemingly defunct M R F so it seems today

          • You may have mis interpreted what I wrote for I was not indicating that Mary Leitao called it “Unexplained Dermopathy (aka “Morgellons”) it was the CDC that used that term. Here is what I wrote: The CDC states that while it is not known at present whether the condition represents a new disease entity, or whether persons who identify themselves as having Morgellons have a common case for their symptoms, share common risk factors, or are contagious, it has begun an epidemiological investigation of the “Unexplained Dermopathy (aka “Morgellons”)

    • scientist-at-large said:

      hi Doc,

      You are not alone in recognizing the shameful state of our healthcare and medical institutions. 50% of the bankruptcies in this country are related to healthcare. This is an unacceptable and unsustainable situation. It is the case we have so many new tools at our fingertips from which to make real progress but the CDC, FDA, MD culture are still working with core beliefs, culture, legal and medical processes that are not benefitting from recent discoveries and technologies. The system and culture that produced this report and took 6 years to respond to something so devastating and potentially contagious is the same one that refused to recognize AIDS was a disease, that shunned the physicians who discovered H. Pylori, who could not prove smoking caused cancer for decades. As both a tax payer and a scientist that has worked at top ranked research institutes I am embarrassed at the caliber of response we give to real problems in this country.

      On Saturday I had a meeting with a new Ph.D. graduate from MIT who is working to help create crowd based clinical trials. Part of the motivation for this is
      the recognition that a great deal of patient data is lost in clinical trials. By lost what I mean is that often information is gathered using a form created by a small group of researchers. Patients are not given the opportunity to provide information other than on the form and usually access to the data gathered is controlled by select group of researchers who can be influenced by funding and donations. This is changing as we speak, but it is the case we are still living with this. the growing awareness of non-MD’s that healthcare is run like a business – its common knowledge that curing chronic illnesses would cause hospitals, clinics and doctors to go broke. When you are outside of the MD culture, there is a different level of objectivity and a different way of thinking… scientists and MD’s have different social laws. MD’s can lose their license if they speak out or use methods that are not “standard medical practice”. Few people realize that their doctors live under such threats. Also their contracts can keep them deviating from standard care or using tests except under specific circumstances.

      Change has to occur from the ground up. Crowd sourced medicine, support groups, and doctors and scientists who are pioneers are essential to make these changes. The only institution I have seen that seems not to have been sucked into the politics of medicine is Harvard. If you guys are listening, please get involved in not just this disease but in evaluating the process by which the institutions in the US evaluate patient complaints and the emergence of new diseases. Something is very very wrong, but it doesn’t have to be this way.

      We have entered a new geological era because we have lost so many species. There are now over 7 billion people on the planet. An entomologist will tell you in the years when there is an abundance of corn, there are a lot more insects. Its rather common sense. If there is a lot more people, wouldn’t there be a lot more food for the things that like to feed on people? I’m just going to go out on a limb, but we do live in an ecosystem…. It seems most MD’s are not in the loop when it comes to things like head lice, skin parasites, worms or other public health “nuisances”… which drive people nuts, understandably. Maybe a number of physicians simply need to get this ailment and then there will be some progress… Just as a doctor who becomes a patient can finally understand the suffering. But perhaps, crowd sourced technologies will step in before that happens.

      • Thank you for the information scientist-at-large, would you please contact me at –mtn4seaeagle@hotmail.com I would appreciate the effort, I live not so far from Boston & would like to talk on the issue, t y

      • scientist-at-large,
        Brilliantly stated! I think you should send your ideas to Harvard.

        I like what you are saying about crowd-based clinical trials. It makes total sense. We need new ideas and feel they will come from those with unbiased belief systems. That a young graduate is pursuing this idea is encouraging. I think the youth coming up in the world are going to be the ones implementing change as they are not buying into accepted belief systems and are questioning everything.

        What gets me ia that NO ONE is keeping any kind of data on Morgellons. The CDC at one point said on their website that they were not collecting any information or keeping statistics on how many people were reporting the disease. With a name like Centers for Disease Control, one would think they’d be very interested in hearing about a potentially contagious illness, no? Instead they essentially posted on our website, “Don’t call us…”

        A minor shift in thinking and a desire to be proactive in the world in which we participate in would make a huge dent in the ignorance that surrounds this disease. In my perfect world, doctors (particularly dermatologists) would as a matter of simple procedure, use a dermascope on every patient that walked into their office. They’d keep track of those that had our symptom set or fibers in their skin and they they would communicate this information to their community of peers. How hard would that be, being that there are already medical associations in place? I think physicians would be surprised at how many people have fibers in their skin but have no symptoms of Morgellons (yet).

        Even though the medical community has nothing to offer in the way of treatment, they would be the most likely to sound the alarm. Since they have more “credibility” over a mere patient, there might be some attention paid to the cause.

        By the time doctors become aware that they need to look at patients skin with microscopes, there will be so many people with fibers that they’ll end up saying, that fibers are normal.

  33. dividingcricker said:

    monsanto ….the energizer bunny keeps going and going being suied thrown out of countries out of nations i read gmos are dead … maybe the highest government officials are watching this thing crumble… lets just keep our fingers…. crossed…. ps my thougts on how we got morgellons……cotton(dont see much cotton in pill bottles any more) –clothes(have heard of whole clothing stores throwing everthing out and restocking with new clothes) paper (there is a certain amount of cotten in money cardboard paper plates. qtips fem.napkins just a thought…..in india that was the thing that got them …the cotton…. killed the cows,remember the cow is holy ….killed sheep… people couldnt work after one day because of allergies….

  34. Robin Laws said:

    Just wanted to be sure & share this audio interview with you all from our good Dr. Wymore. It’s got alot of hope in it regarding the study…

    http://www.krmg.com/Player/101246021/

    love ya’s ~~ Robin

  35. Sorry, I find this hard to except unless I’m missing something, this doesn’t explain the small very white spherical things I found on my skin for some time, or the very white oblong worm like things I also found on my skin for some time, from the start of lesions I developed one on my bottom lip pad, after 3 & 1/2 years it finally healed but noticed a lump inside my lip & after weeks more the lump I thought was gone until I ran my tongue along that same lip & could feel at the top what seemed to be segments of a worm, I freaked out and went to Doctor to hospital’s with no one seeming to care that was 4 yeas ago or more, this got bigger smooth went from my lip created a tubular fleshy mass that ran from my lip along the cheek line to my ear. I no longer have been freaked out by this & just accepted what it is for the fact, no one was helping!, it moves at times to almost fill my bottom lip from time to time can anyone help explain this?, I’m asking in earnest & sincerely, how could all this be from tooth filling that are not compatible with the body?.I respect Dr. Amin but are in need of answers, if anyone know of a Doctor the would do exploratory surgery I am waiting to hear from them unless someone has a better idea. http://www.kpho.com/story/16666981/cdc

    • Doc, I believe, whatever it is travels. I had what it looked like a blood blister on my lower lip pad and one day it just started bleeding and would not stop until I kept pressure on it for a long time. Then a few days went by without it bleeding but it happended again two days latter. A week after nothing so I went to a party and it started again but since which has been about 11 months, nothing but the blood blister spot is still there. I know I get them in my hands for my hands get numb but later there may only be in one finger because only one finger is cold and numb.

      It does travel through the blood for the bleeding I had on my lip also happened to my rt. thigh and finally when I was able to get the blood to coagulate it built up enough to stop the flow. But when I took off the bandage the coagulated blood stuck to the bandage and when I examined it, I found the black spots that I use to find in my stools.

      • I understand what your referring to Linda, I along with many I have talked with about what you describe & purple marks on the skin that just appear & bleeding that just happens or I might touch an unhealed lesion that’s been their for months that starts bleeding. this is quite different, it’s been there for 4 years now & is about 1/2 inc. wide by 7 to 8 inc.long?, it runs from my bottom lip along the cheek line to my ear, I don’t know where it goes from there, although I get upset from time to time I can’t do anything about it. wishing you the best Linda, be well

        • Doc H. I wish you well too and I say a prayer for all of us each night. Hopeing when I go to conference will find out more what is being done to bring us to light. Also hope that we can get more organized and connected somehow with leadership from those who are more knowledge about this, meaning doctors, scientists, etc. who also may have more influence with people we need to approach in getting more funds and studies and tests done. Hope you are beyond the worst and painful stage. Linda

      • The point I’m trying to make is I feel we all have this worm like Parasite, it just so happened to end up in a place that is very noticeable & I also feel if a Doctor is willing to get this out or even some of it, it would give us an idea of what we all are dealing with, the area of my cheeks have the same thickened areas as many Morgellons Disease people refer to as uneven or thin & thickened areas where they are effected, I hope I’m making sense, at times having to deal with C F S that I had since 1993 & then Morgellons in 2003 I am not able to get all my thought together on paper as I would like. Sincerely: Doc Holliday

  36. Well it appears that the FDA and the CDC take their quotes from the same play book! Hundreds of dogs have become ill and many died after eating chicken treats that were made in China and are under the Nestle Purina Petcare, and DelMonte Corp. brands.
    The FDA refuses to do anything because: “No specific products have been recalled because a definitive cause has not been determined.”
    It’s like they are all about saying, “if WE don’t know what causes it, it isn’t happening!”
    Sad that we and our pets have to suffer due to our governments unconcern.

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