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Post by whiterose on Sept 13, 2006 14:22:09 GMT -5
They have just concluded that Gulf War does not exist and they will now conclude that Morgellons does not exist. Those of us posting here obviously know better. Although I believe economics is a big part of this, I believe there is more. I have had Morgellons for approximately 25 years and it has a strong potential in several areas. Hi Aussie, this is for you, you are not crazy. Take care of yourselves.
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Post by aussie on Sept 13, 2006 19:39:35 GMT -5
Whiterose, thank you very much for that. I would like to expand by referring anyone who is interested to that same subject, including Lyme disease to yesterday's posting: surfingtheapocalypse.net/cgi-bin/forum.cgi?read=150991 ......................................... "Still No Such Thing as Gulf War Illness", and the reply, "A Veteran's Observations". You'll need to be taking deep breaths when you are reading the reply...have a brown paper bag handy. You will note the reference to antibiotics and Mycoplasma/ Lyme disease. The subject of antibiotics always opens up a whole can of worms.....d**ned if you do and d**ned if you don't stuff. Personally, I had a bad reaction to Penicillin when I was a child, and have only taken them about twice in my life, briefly, and not for years. Obviously, if one were in a life threatening situation with septicaemia, you would be getting dosed to the eyeballs with it and be pleased it was available. As I have previously mentioned, I have 6 grandchildren(three different families who live in different states), and at least once a month one of them is on antibiotics. And, they come from very healthy, professional backgrounds). Why? My children, who were born 30 odd years beforehand...well, I can count on the fingers of my hands how many times they had to go to the doctor let alone have antibiotics. However, to get back to the Mycoplasma, if you read the research done by Donald W. Scott MA MSc and William L.C. Scott(The Common Cause Medical Research Foundation, Canada)....... Quote,"Now, suppose something were to kill the bacterium-something such as a varient of PENICILLIN which opens a rupture in the bacterial wall. the draining of its cytoplasm will kill this life-form, but there is still a will to live in parts of the DNA and RNA. Thus, particles of the DNA or RNA cluster together and quicly assemble a protein protective coat around themselves. Here you have the esssential virus: a particle of genetic information with a protein coat...................... Somehow or other, the life-force which motivates the bacterium has an inherent sense of which nucleic particles it needs to save when the original life-form is threatened. Thus, the various species of virus are select particles of genetic code which have sheltered themselves with a protein coat until they can access another living cell and get on with the business of life. Unfortunately, in seeking to save their life particles, the viruses often have to destroy other life-forms such as human cells. When the latter happens the destroyed cells present as disease-ravaged remnants of earlier life-forms. If the bacterium is killed, not only is there an attempt by the RNA to preserve its life as viruses, but particles of the DNA will also seek to continue as living organisms by creating themseslves a membrane and setting off within their environment to find another host cell which will let them inside and give them a refuge. Again voila: this cell-wall-less DNA particle becomes a self-replicating but somewhat incomplete life-form known as a species of Mycoplasma!" So, what is the conclusion?? Antibiotics only half kill "the thing" which lives to mutate and cause further havoc. Coffee break.......can't give up on the coffee!
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Post by Joyfullee on Sept 15, 2006 0:54:53 GMT -5
Here is an excellent letter to copy and give to your physicians: Thanks for the AP update on the Gulf War illness. My heart goes out to them and to their families. If each one of us make an effort to educate the physicians we have individually seen, we would go a long way toward making a difference. We must. Our respective governments need a grass roots push. "Get ready! On your mark! Get set!" GO! Tell anyone who will listen and those who don't...will probably learn the hard way. I'm mailing information to all the physicians who have failed me in the hope that the next patient will not have the emotional trauma of being discredited, added to their already horrific, multi-symtoms.
From Dr. Greg Smith DEAR COLLEAGUE:
I appreciate your taking this information and hope you find it informative. It is my purpose to inform you of what I think is a rapidly emerging infectious disease. I have seen patients with this disease in my practice. Whether or not you know it, you do as well.
One major organ system affected by this disease is the skin. Patients report itching, stinging, and biting sensations. Most report a ‘skin crawling’ sensation. Patients usually have severe excoriations from continued scratching. Many have large open sores. As a pediatrician, scabies would be high on my differential diagnosis list, but many other disorders might also be considered.
What makes this so different is that many patients have also noticed other skin symptoms and changes in their skin and hair. Some of the descriptions are quite bizarre and unlike anything I had ever been taught or observed. Frankly, the descriptions are so far from anything most of us think of as typical or even possible that credibility is quickly strained.
Many patients report they have seen ‘fibers’ come out of their skin. They report seeing these odd fibers in their home and cars and report they have never seen these before. Even more strange, many report seeing living insects emerge from their skin! Many patients, thinking it the appropriate step, collect specimens and present them to the physician they consult---commonly a dermatologist.
Eighteen months ago, I was not familiar with the psychiatric diagnosis Delusions of Parasitosis. The term ‘match-box’ sign was not familiar to me. That is the term used when patients who believe they are infested with parasites collect skin specimens in a container (in the past, this was most commonly an empty matchbox) to show their doctor. This sign is supposedly pathognomic of Ekbom Syndrome, now generally known as Delusions of Parasitosis or DOP.
The dermatology literature very clearly states that DOP is a diagnosis of EXCLUSION. Yet all too many patients have been immediately labeled as psychiatric cases with no lab studies, no skin biopsies, and often not even a thorough skin examination. Their self collected specimens are usually dismissed and trashed.
Even after patients see a psychiatrist and are pronounced entirely sane, dermatologists across the board have ignored the psychiatry opinion and have started patients on pimozide or other potent psychotropic medications. Some patients have had severe adverse reactions.
More persistent patients report multiple consultations with a variety of specialists. Many feel the physicians did not take them seriously and did not listen to their story. Many have lost faith in our medical care system and have turned to alternative medical care or self treatment. Descriptions of their self treatments are frightening. The treatments have included not just topical application but oral ingestion of insect sprays! Some have been victimized by unscrupulous alternative health care providers. These patients’ stories sparked my interest in Morgellons while also making me ashamed of the treatment given them by members of my profession!
Tragically, it seems the systemic symptoms are not being considered in these patients. This appears to be a multi-system disorder, as a large proportion of patients report neurological, psychiatric, and gastrointestinal symptoms. Almost all experience significant and disabling fatigue, problems with concentration and short term memory as well as other cognitive difficulties. Many experience periods of what is called “brain fog”. Some have been diagnosed with ADHD, Bipolar Disorder, or other psychiatric diagnoses. A significant number have neurologic impairments, including Multiple Sclerosis, ALS, and other neuropathies. Among children with this disease, about half have the diagnosis of ADHD. 10% carry the diagnosis of autism.
The personal medical history of most patients IS bizarre. The symptoms they describe, as well as their observations, seem totally beyond belief. When they occur on one’s own body, it can cause one to question his sanity. I know. I have had this disease since May, 2004. I have seen things happening to my own body which have stretched the limits of belief. I also developed neurologic symptoms early this year which became severe enough I have been unable to work since May, 2005.
Dermatologists use the term ‘folie a’ deux’ when a family member or associate of the patient develops the symptoms. The term essentially means a delusion shared by two. A similar term is used for 3 affected persons, another if 4 persons are affected, etc. The term has even been used to label those physicians who actually looked and who then agreed the patient had unusual findings!
This supposedly explains the fact that several family members may also have the same symptoms. Personally, that only makes sense for people who know each other well and spend a lot of time together. It does not make sense when unrelated patients, in large numbers, who are scattered geographically all over the United States and in at least 15 other countries, report almost exactly the same symptoms and observations. It also does not make sense that very young children—2 or 3 years old----are delusional when they have these symptoms and say they want the bugs off their skin!
This disease is not recognized by the traditional medical care system. The public health system and the CDC are not investigating, even after numerous contacts have reported concern that this is an emerging infectious illness.
Morgellons is the name we are using although others have called it the ‘fiber disease’, ‘Elliot’s Disease’, and other names. Any of those terms in an Internet search engine will yield a surprising number of hits. The lack of interest in objective research by the public health system and the CDC has been especially disturbing. The CDC was made aware of concerns about this disease at least 5 years ago. Yet there has been no serious investigation by any part of the public health system. Efforts by The Morgellons Research Foundation as well as numerous individuals to interest the CDC in sponsoring research have not been successful.
If you choose to do your own research, you will find many individuals and groups with an agenda. They believe what they believe and want it proved. Some are convinced there is a government conspiracy and the disease is a result of biologic warfare research which escaped into the environment. There is even the alien invasion group. More credible are those physicians who specialize in Lyme disease and believe Morgellons is associated with or a result of chronic Lyme disease. Until the last year, I had no idea of the controversy surrounding Lyme. It seems there are dramatic differences of opinion about almost every aspect of that disease. Even the current testing recommended by the CDC is questioned.
The New Morgellons Order has only one agenda and no pre-conceived ideas about the cause or treatment of this disease. Our purpose is to get this researched and ultimately find a cure!
As an individual, I am sharing this information only to inform. I believe knowledge of this disease must be distributed to medical professionals. I expect nothing from you and sincerely appreciate the time you have taken to read this and review the information I have given you. I know I become passionate about issues in which I believe. But I do not believe I am delusional and my psychiatrist, who I have seen regularly for almost 20 years for my ADHD, also does not believe I am delusional. He says he has no idea what is causing my symptoms, but believes they are real. My neuropathy is certainly all too real.
Since I developed this disease, I looked at rashes in a new light. I began using a magnifying lens and not just my bare eyes to look at rashes. The number of children in my practice who have skin lesions like mine was frightening.
I am afraid. I have a serious health issue which I believe to be related to Morgellons. I believe many, many people have this disease and may develop systemic symptoms in the future. I think Morgellons is an emerging infectious illness which is already widespread.
I have been shocked at the official position of the CDC---the government agency tasked to protecting this nation from infectious agents. I have thought many times of the scenario concerning AIDS described in the book and TV mini-series titled “And the Band Played On”. Both my father and my wife received blood transfusions in the early 1980’s. At that time the CDC was aware of AIDS and knew the virus was transmitted by blood. My loved ones were lucky and did not receive contaminated blood. Many patients were not so lucky. Their lives were profoundly affected and shortened due to a lack of CDC action. Will you and your family be lucky?
Sincerely and appreciatively,
Gregory V. Smith, MD, FAAP
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Post by thinker on Sept 15, 2006 16:13:27 GMT -5
For what it's worth, the Gulf War Vets' med recs were pretty much all destroyed in the OKC Murrah Bldg incident. So, how can an illness exist if there's no documented proof?
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Post by sarahconnor on Sept 15, 2006 16:54:22 GMT -5
I think it is a crying shame that the Gulf War Vets. are not being recognised as having a real disease or illness.
At the time I started to research Morgellons Gulf War Syndrome was on the top of my list. The symptoms are so very similar.
I used to read on the Gulf War Vets website it was heart breaking. Also a lot of stuff written about documents and files that were destroyed. All a cover up.
Take care people.
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Post by whiterose on Sept 24, 2006 14:11:41 GMT -5
When I found out that that they stated that Gulf War was not an illness, I became very angry, at the government for its obvious covering up of the truth. I live in a country I do not recognize, run by persons with a criminal mentality that mirrors Hitlers germany. I look and listen to others who have similar illnesses, similar concerns about those running things. I watch as money that is supposed to be spent for the overall good of the country is pilfered by thugs and I have felt impident to do anything. I made a phone call after I read the current ruling to congressman John Salazar of my disgust for what is happening to our vets and also to the people of my country. I went into detail about the scope of this issue and my belief that bird flu is minuscule compared to the mycolplasma problem that is turning up in so many.
I received a Letter with a Privacy Release Form so that he could look into this issue that I was so obviously passionate about. I am in the process of writing this letter and I am asking for your opinion as what I should highlight as important. There is currently a great deal of unsatisfaction with those in government not only hear but worldwide. I believe the mycoplasma diseases are a part of the plan of the New World Order. It is hard for sick people to fight, they tend to go along as making waves is as hard on them as the people they are trying to move into a more compassionate mind frame. I will do my best with this letter. Your input would be appreciated.
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Post by aussie on Sept 24, 2006 18:16:12 GMT -5
Whiterose, I am wondering whether you might consider getting in touch with Donald Smith and William Smith who wrote the very informative articles in Nexus Magazine, "Mycoplasma the Linking Pathogen in Neurostemic diseases", and "Avian Flu or Mycoplasma Epidemic"? They are from The Common Cause Medical Research Foundation (Canada).
Donald Scott hold a Master of arts and Science, was a commissioner of the AOntario Teachers Federation and a veteran of the Royal Canadian Navy. His phone no is +1 (705) 670 0180.
William Scott is the current president of the Common Cause Medical Research Foundation and editor-in-chief of The Journal of Degenerative Diseases. His phone no is +1 (705) 673 0726.
They can both be contacted at The Common Cause Medical Research Foundation, PO Box 133, Stn 'B', Sudbury ON P3E 4N5, Canada.
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Post by whiterose on Sept 24, 2006 20:00:02 GMT -5
Wonderful Aussie, Thank you. I will do that. Smith or Scott.
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Post by aussie on Sept 24, 2006 21:14:07 GMT -5
Sorry, Whiterose.....guess I'm not as clearheaded as I thought!
It's Donald and William Scott
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Post by whiterose on Sept 25, 2006 1:29:18 GMT -5
Aussie, I will call them, Thank you
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Post by whiterose on Sept 25, 2006 10:28:26 GMT -5
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Post by aussie on Sept 25, 2006 22:27:44 GMT -5
Hi Whiterose I tried to go to the two sites you recommended, but I'm afraid there was a typo error in both of them. However, I did end up reading: portland.indymedia.org/en/2006/08/344305.shtml and portland.indymedia.org/en/2005/02/310326.shtmlIt was encouraging to read in the second article that at least when Morgellons was discovered in Switzerland it was not at all discredited or given DOP status, and they are saying "chem trails" over there. Anyway, I read the whole page and there is a bit further on about oxygen therapy being beneficial, as parasites like an anaerobic environment. Whilst this is probably true, I don't really know if it would help with Morgellons because the "critters" love to live on the surface of the skin too, don't they? But since, they are not all outside having a picnic, so to speak, maybe it would upset their internal holiday camp? It just happens that I have one of the machines he describes, although I haven't used it for ages. Has a different brand name, but it's the same machine. You lie flat on the floor with both of your ankles in grooves on the machine, which, when turned on, vibrates the very thingyens and your whole body starts to vibrate/wobble from head to foot. You can time adjust it, but the maximum time recommended is 15 minutes. It's supposed to be the equivalent of walking about 6kms. It is rather amazing...I found that when I set it for 15 mins, at the end of the time, my whole body would tingle and the next thing I would be waking up from a deep sleep about 30 minutes later, totally refreshed and full of beans. They are about $280 Au. The other thing was the link to topical cancer salves. Bloodroot which has an ALKALOID principle = "sanguinarine". The following snip from the site is interesting: "I personally prefer goldenseal and would not advise anyone to use bloodroot unless (1) time is of the essence, (2) the tumor is suspected to have a viral component, and (3) there is someone experienced available to supervise the treatment. Bloodroot is unpredictable. Moreover, it is absorbed into the bloodstream very quickly so that once it brings about a reaction, one cannot really change one's mind about going through with the process. The treatment therefore usually becomes systemic as well as dramatic. Goldenseal treatment takes much longer but the herb's actions are more predictable, and, I think, more precise." Before I continue, I want to make it quite plain that I am NOT personally advocating the use of any type of salve whatsoever, however, I would like to share my experience of using one(a cancer salve containing bloodroot) with anyone interested because it just struck me that it may be relevant to Morgellons. (If is is true that it is absorbed into the bloodstream quickly and there is a viral element suspected[in mycoplasma], and it kills bacteria/cancerand works systemically?) To cut to the chase....after I developed the first "pimple"on my arm, which was itchy, burning and would not heal I went to a lady naturopath who said she thought it was shingles(herpes) and/or precancerous. After I had tried a number of homeopathic remedies which did not work, she suggested that I use C*****a salve, which if "cancerous"would eat the thing away and if not, nothing would happen. My doctor looked at it, did a biopsy(after about 6 months) and ended up shaking his head. Now keeping in mind that I had never had any kind of skin cancer(or any other sort), in my life, I thought it was highly unlikely that it was skin cancer, but since it had been burinng, stinging and itching, more likely to be shingles. In the meantime, I developed 2 more "pimples", one on each leg in approximately the same place, and they had developed into small lesions that weren't healing either. So, being a brave guinea pig, I bought the C****a salve. First I put it on a freckle or two to see if there was any reaction. No reaction. However......when I applied a small blob on a matchstick to the arm lesion(and it was only small), boy oh boy, was that a different story. You apply it, put a bandaid over it and wait for the reaction to start. The process takes about 8 hours. Only one application. Where I had applied in on my arm, not only was it eating out the lesion but other minute lesions were appearing all around it, so I applied it to them also. There was some pain with the process, but it killed whatever was there and I ended up with several small white scars on the arm( later on). Having success with the arm I decided to move on to the legs, which I did both at the same time. Well.....the pain was so intense in the next few days that I can honestly say, I was wishing I hadn't, I felt so bad. And the lesions became quite large, but they both healed up very quickly. The thing is, whereas the lesions were burning and stinging and itchy before the treatment, they were quite small, but after the application the pain caused by the salve went right up my entire legs. I was wondeering what I had done to myself. I am now thinking it was because Morgellons goes more than skin deep as we know. (I know many other people who have used the same salve on regular skin cancers, and they have only had very mild discomfort and the skin cancer falls off.) That was 4 years ago. I guess, my thoughts really are...is there anybody out there with sufficient knowledge and expertise to investigate the properties of bloodroot to see if perhaps it could be incorporated into a beneficial treatment for Morgellons?
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Post by aussie on Sept 27, 2006 20:50:35 GMT -5
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Post by whiterose on Oct 1, 2006 19:36:33 GMT -5
New Read: Project Day Lily at www.projectdaylily.com/By Garth L. Nicolson, PH.D. and Nancy L. Nicolson PH.D. Both from the Institute for Molecular Medicine/ www.immed.orgThese people have put there lives on the line to do the right thing. This book will tell you about some of the things going on with you and where some of the responsibility lies. I understand there are those who cannot afford it but for those of us that can it will bring us more understanding of our own dilema. Perhaps we can then not only give insight to those on this sight but to (knock-knock) Drs., Dentists, Hair Dressers, Teachers and the public at large. Our government is failing to do this and so we with what we know and what we will learn from this book must take action and make them hear our words. Perhaps if we whisper they might become curious (what has happened to all the curious people), if not we must yell! May God help make us successful in this task.
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Post by sarahconnor on Oct 2, 2006 5:06:27 GMT -5
www.abc.net.au/news/newsitems/200411/s1242854.htmI did a search at ABC online (Melbourne) the only recent story I could find on Gulf War Syndrome was from 2004.. Maybe my google skills aren't up to scratch but we haven't heard a thing on the news or in the paper about Gulf War Syndrome of recent here in Australia. Did I miss it?? Maybe its the good old government not letting the messages filter through properly. Or I am just brain dead once again, with Morgies paranoia. Keep up the good work folks. I limit my posts these days, much healthier for my mind. P.S. I got a reply email from Mr Dan Rutz. You can read it at Morgellons Watch under the "Doctors & Patients" topic. I am trying (very trying I know!). Aussie - if you would like to join myself and some other Aussie Morgies in our quest, please send me a pm or whatever and let me know if you are interested. If you are not, I do understand. Love SarahC (aka Gillian)
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Post by sarahconnor on Oct 2, 2006 5:10:06 GMT -5
Another thing with reference to Gulf War Syndrome.
When I first started researching my skin symptoms I found the veterans website. I tell you reading some of those stories hits home, gut wrenching. I should go there and give them a nice post. Those poor men.
I even read a document which was an interview with someone who was in the Military and he spoke of how he was ordered to destroy confidential files etc etc......
I have no idea where the link is this was well over 2 years ago.
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Post by thinker on Oct 2, 2006 12:48:15 GMT -5
whiterose -
Thank you for the link. I can't imagine what the two doctors in Austin went through to get this information.
I read the excerpt and was - uh - not even sure there's a word for it. I will definitely be getting the book. Thanks!!!
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Post by sarahconnor on Oct 2, 2006 18:42:18 GMT -5
Ok sickandtired I think I got the message..
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ppy18
New Member
Posts: 6
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Post by ppy18 on Oct 3, 2006 2:27:36 GMT -5
i enjoy sarah conners post. what is the problem?
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Post by whiterose on Nov 8, 2006 18:53:42 GMT -5
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