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Post by dkushner on Sept 5, 2012 2:05:05 GMT -5
rarediseases.info.nih.gov/GARD/Condition/9805/Morgellons.aspxNow I'm really confused! These NIH links are working. It looks like the NIH has some interest in undiagnosed diseases now and they have an active site for Morgellons. It looks like they are going to do some research or something? (What like the CDC?). I wonder if Dr. Striker's research has something to do with this, or maybe the recent suicides? The NIH still links to the CDC site that posts result that the Morgellons fibers are probably cotton. That is not a good sign. I don't get it, my symptoms were really obvious for the first three years, I mean you don't even need to be a doctor to know that there was something seriously wrong with me. How can the CDC do such poor work? They must have picked the wrong patients, because if they had picked me 5 years ago, they would have had a bucket full of weird stuff growing from my skin!!! Also, why the focus on the fibers, fibers were a very superficial symptoms for me. I had millions of microscopic weird things, and some that were not microscopic, even live worms, and some other things that appeared as though they were not from this world. I saw at least a half-dozen different types of living moving worms from my skin. I had buldges on my arms and in my ears, weird shapes in my ears and my ears swelled up. I had dirty looking fuzz all over them and tiny (larve?) protruding though the skin. There were millions of white fibers, and millions of tiny hollow tubes with fibers growing in them. There were all sorts of weird fibers (different kinds), tiny ropes, crystals, bug-looking things, big hard clumps of growths, white crud that under the microscope looked like millions of the same tiny shapes all glossy and sparkly, I mean weird stuff that you just can't miss. they are palying it down with this fiber stuff, making it sound like, if it is an infection, then it's really not that bad ... well IT IS that bad, actuallt, IT'S WORSE. They need to look at the real photos. Instead of fibers, maybe we should make a list of all these things we arew seeing (all 500), and let them dismiss each one by one. - Daniel
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bluesky
Junior Member
In memory of Dorothy
Posts: 63
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Post by bluesky on Sept 5, 2012 14:12:28 GMT -5
Good catch, DK! I looked at it and also am puzzled. So, is the NIH saying that Morgellons is genetic, or rare or both? And where to find their scientific and clinical evidence to support that assumption? Coz I don't see it on that page or on any of the links on that page. Not a lot of info; small number of links which are not pertinent or relevant, or lead to other sources which have no info about Morgellons. Searches of clinical trials for Morgellons turned up a zero trials. Searches of clinical trials for Unexplained Dermopathy turned up 1 study of thyroid function. Maybe all 500,000 (+/-) of us should register at this other NIH link www research match org which brings together volunteers, researchers, active studies and institutions. LOL Think that would get someone's attention?? Or maybe we should all show up at the Washington DC Hilton on Oct 2 and demand that this illness be researched properly. Maybe look into a group discount room booking. All useless links. And no date of last update for the page, either. Very frustrating. And speaking of the CDC... one of the goals of their Unexplained Dermopathy study was to answer a list of questions, including whether or not this illness warranted further study and investigation. I read the CDC report, but failed to see that question answered. Or maybe I missed it? Looks to me like everyone is trying to cover their ass-ettes.
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Post by itchin4answers on Sept 5, 2012 22:44:28 GMT -5
How interesting, and it links to the CDC website.
For what it is worth I will repost a letter from the National Health and Medical Research Council in 2008 and what they had to say about Morgellons and the CDC.
National Health and Medical Research Council were of the opinion back in 2008 that Morgellons was a fungus. The author of the letter is no longer working with them.
A HEALTHY AUSTRALIA
Dear Ms Penkethman
Thank you for your letter to the Department of Human Services in Victoria dated 22nd April 2008 in relation to Morgellons disease and the lack of knowledge about the disease amongst the Australian community. This issue was referred to the NHMRC for advice.
The NHMRC acknowledges Morgellons disease as an unexplained and debilitating skin condition which is sometimes characterised by cutaneous symptoms such as crawling, biting and stinging sensations, granules, threads, fibres, or black speck-like materials on or beneath the skin, skin lesions and systemic symptoms such as fatigue, memory loss, confusion and joint pain is thought to be rare. At present, the aetiology, epidemiology and corlmon risk factors of the disease are unknown and there has been insufficient published scientific and medical analysis of the unexplained dermopathy.
The primary goals of the study launched by the Centers for Disease Contol and Prevention (CDC) in the United States of America are to 'better describe the clinical and epidemiological features of this ' condition and to generate hypothesis about possible riskfactors'. The CDC is expected to disclose the results of this investigation by the end of 2008. Furthermore, there are a number of other studies of Morgellons that have already been conducted, the results of which are yet to be published. We anticipate that the findings of these studies will also be available before the end of 2008.
The NHMRC has examined the information currently published in peer reviewed journals and has concluded that, at present, there is insuffcient evidence to enable the NHMRC to advise medical professionals and the Australian community. However, the NHMRC will continue to monitor the literature and may decide to issue advice when more information is available.
We appreciate you bringing our attention to this matter and thank you for taking the time to write to us. Should you require further information please contact
Yours sincerely
Executive Director Health Evidence and Advice Branch 18 June 2008
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Post by dkushner on Sept 5, 2012 22:45:03 GMT -5
The NIH Site allows questions. I just submitted the following: Why did the NIH post information that Morgellons is: duplication/trisomy of 1q42 11 q42 12 then remove the site, while the CDC maintains that it is a purely psychiatric condition? I have had Moregellons for 9 years and have lost my 25 year software engineering career as a result, and still have many serious co-infections and complications resulting from not being able to get any medical help because of the DP mis-diagnosis. Will NIH also attempt to minimize the seriousness and legitimacy of the infectious condition? The way CDC and doctors are handling this condition is causing as many problems and suffering as the condition itself. These organizations need only be honest to change this, even if they cannot provide treatment. Is this asking too much? REF Photos: www.flickr.com/photos/48534271@N03/
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Post by itchin4answers on Sept 5, 2012 22:47:26 GMT -5
Daniel,
Your link is not working. Well said by the way.
itchin
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Post by dkushner on Sept 5, 2012 23:28:35 GMT -5
Daniel, Your link is not working. itchin Thanks!! I just fixed it. - d
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Post by itchin4answers on Sept 6, 2012 2:02:44 GMT -5
...omg Daniel...my fingers do that too...tips of my fingers are thickening and looking very arthritic. That shape in your wrist, my God mate I can not get over that. I have my issues and thought my bulgy areas were bad. I am so sorry for you and me.
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Post by ibzahp on Sept 6, 2012 2:31:42 GMT -5
Great pics DK. I feel like the cdc wants us hidden in plain view. The finger tips and nail bed are so classic of what i see time and time and time again. the fiber balls so many kinds and little cocoony things...The amount of vigirous movement this stuff displays especially immediatly after exiting body and when damp, and the varieties of "stuff" its truly astounding and repulsive. I don't know why exactly, but I am starting to feel , dare i say hopeful that our condition is warrenting attention once again. Its probably too late for me as I have had it since 2001. But are we seeing a resurgance of interest from big pharma and the medical establishment? Or am I just having another one of my many shared delusions. How many must share this before it is no longer a delusion? Blue Sky I love your kitty btw
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Post by itchin4answers on Sept 6, 2012 20:45:23 GMT -5
I sure agree with you Inez. I feel it's too late for me too, but that'll not stop me from trying, and enjoying what we have left huh.
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Post by dkushner on Sept 7, 2012 1:55:29 GMT -5
...That shape in your wrist, my God mate I can not get over that. The buldge on my wrist is not Morg. It developed quickly and remained the same for 3 monts. It didn't hurt or change shape or size. Then one evening, I had a very strange sensation and knew something was going on with it. Suddenly, the large bulde separated into a 1/2 dozen lumps that raced about under my skin up and down my arm. After about 10-15 seconds of this, all the lumps re-converged back into the buldge. The next morning the buldge was gone and other symptoms began, first loud gurgling in my stomach, then after a several days this stopped and I had huge amounts of thick yellow mucous that I was coughing up and was in my stool, then after several more days, there was redish granular material in the mucous, then extremely stiff neck, and then blood and parasite eggs in my stool for about five days, the eggs would return every 3 months and the blood was continuous. I had recalled that one on the symptoms on my skin were tiny white "Y" shaped things, these match exacly the cercaria for P westermani, a trematode worm. The other symptoms also matched this. The eggs in the stool were actually from another typde of trematode that I was also exposed to. The P westermani eggs are in the granular material that was in my mucous and then later in my stool. These are very small, the ones in my stool initially (also photos on my site) are much larger. They all (trematodes) have a similar time cycle (3 months), that is why they completed development at the same time. Even knowing all of this, I was still not able to get the doctors to test nme and help me because I have not traveled to central america, I just used drugs from there. This was a nightmare. After several months of this, the parasites stated to develop and come out of my ears (again in cycles), still no help from doctors. I have photos of these as well but not on my site, and not for the faint of heart. I will put these on my site too. This is one of the problems with Morgellons. If you are diagnosd as DP and you actually contract other parasitic infections at the same time you contract Morgellons, you are in deep doo doo. Like me, it was several years of full time fear!!
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Post by itchin4answers on Sept 7, 2012 2:04:51 GMT -5
Oh Daniel, my heart breaks for you. You are a smart guy, you have a lot of insight. So what if you have taken drugs, who hasn't? and it is not a crime. I agree with you about the deep doo doo. I was the picker Queen, but that ain't my fault either. I had always been an observant girl and when this creature started to take a hold of me I did what any normal human would do - fight back!
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Post by dkushner on Sept 7, 2012 4:29:53 GMT -5
Oh Daniel, my heart breaks for you. You are a smart guy, you have a lot of insight. So what if you have taken drugs, who hasn't? and it is not a crime. I agree with you about the deep doo doo. I was the picker Queen, but that ain't my fault either. I had always been an observant girl and when this creature started to take a hold of me I did what any normal human would do - fight back! I didn't pick at this in the beginning. The first several months (of photos I have of my fingers) was without any picking. I started when I knew that I would get no medication to help, and like you I want to fight this stuff. I tried to remove what I can so my body has less to fight. The last time I was at the doctors office was because I had large pustules that were aneurobic bacterial infections. I needed antibiotics or it could possibly kill me. I did get them, but only enough to help kill the pustules. I was glad to get it. The doctor made me get an aids test after seeing my fingers and the infected lumps (Wow, now he can see symptoms!?!?!) The first thing the doctor said to me was (yelling):Your picking!! Stop picking!! (this was not my reg doctor, he is nice - but still hasn't helped) What I didn't tell them though, was that these pustules were the result of a sudden growth of Morg under my skin. It itched like heck and after scratching it, it loosened the material under the skin and it became infected, even though the skin was not broken in these spots. There IS weird stuff under my skin growing in some spots. That is why sores will not heal. There are large growths deep under the skin. The sores will not heal until the material at the base calms down and stops growing. Several months ago, I had a sore that would not heal for a very long time. It was one of the spots that was initially infected 9 years ago when all this started. The spot still has problems. [This is bad] .. I dug a big hole in my skin to see what the stuff was. There is a big area deep under the skin in this spot (a couple inches in dia.) where there is a growth. It is as hard as metal or stone and cannot be removed easily. It is extremely compressed material and I was only able to get a very very tiny piece of it even though it is very large. The stuff is as hard as metal!! It's really hard - weird! The tiny piece I looked at were tiny objects that looked alien. Really looked alien. It is either GMO or alien! It is surrounded by tissue that has like a brain-like shape. It looks like (guess) this tissue is shaped so that it can hold as much blood as possible. The thing bled like I could not believe. There is something very very wrong with these Morgellons symptoms. I think CDC (my personal speculation), is protecting bio-tech, an area that is supposed to be the next huge money maker for people that are in-the-know (politicians and corp execs). They are probably heavily invested and something like Morg could cost them time, money and scrutiny. It's cheaper and easier to let us suffer and die. They want to make a ton of money before any of the problems are found out. Just like when the industrial revolution began. No one wanted to consider global warming. They wanted to rape the earth, not save it!! We need to sue these guys, but as long as we are stuck trying to prove that we are not crazy and need medical help, we do not have the time or means to try to find out who's at fault. That's what they want - so far it's working. - d
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Post by itchin4answers on Sept 9, 2012 18:32:23 GMT -5
Oh Daniel, my heart breaks for you. You are a smart guy, you have a lot of insight. So what if you have taken drugs, who hasn't? and it is not a crime. I agree with you about the deep doo doo. I was the picker Queen, but that ain't my fault either. I had always been an observant girl and when this creature started to take a hold of me I did what any normal human would do - fight back! The first thing the doctor said to me was (yelling):Your picking!! Stop picking!! (this was not my reg doctor, he is nice - but still hasn't helped) How interesting what you said Daniel. At the start of my Morgellons symptoms I too saw a different doctor at the same practice I was seeing my regular GP, who was on holiday at the time. When I walked into the doctors office he yelled at me, pointing to my face saying "you've been picking!!". He had no idea why I was going to see him, but he couldn't help himself he just had say something. I was accused of "Doctor shopping" at that time by a private psychiatrist I was seeing. I said to the shrink my usual GP is on holiday that is why I had to see someone else. I recall around that time seeing a different doctor also at the same practice. I told him how lots of blue fluff can come out of my skin. The doctor gave me a swab pack and I said we can take the specimen now, watch I will show you. The doctor stopped me immediately, he didn't want to LOOK. So I had to take the kit home and collect the blue fuzz myself. The specimen was sent to the lab and it grew nothing. So this then gave this doctor ammunition to tell me that happy skin is healthy skin. Will we ever get through this ordeal? Some days I really do wonder and treating the Morgellons is like hitting ones had against a brick wall. I really wish you well Daniel.
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Post by tierracast on Sept 10, 2012 2:44:02 GMT -5
The doctors and medical profession in general won't look into this or acknowledge this because the CDC says it isn't there. The CDC says it isn't there because they are a branch of our government and our government is responsible for this. You need to look into chemtrails, NWO (New World Order), Georgia Guide Stones, HAARP, eugenics, Info Wars.com, Prison Planet TV, and/or Jesse Venturas 'Conspiracy Theory' on youtube. There you will find the sad truth of the whole situation. Bottom line is the NWO wants us all dead and the GMOs in us are just one of their tactics. They've put it in our water, food and the air we breathe. A few other ways they are carrying out this plan is the flouride in our water, vaccinations that contain live cancer cells, the reconstruction and distrbution of rare diseases like West Nile and Ebloa. Apparently this plan has been being carried out for a long time, at least as long as they've been printing money. Guess they got tired of being descreet, but then they really don't have to cause few are willing to believe our government would do this, that it's following a goal Hitler had. Look at those web sites and SEE THE TRUTH.
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Post by itchin4answers on Sept 11, 2012 18:42:08 GMT -5
Hi tierracast,
I liked your post and you know, it has taken me years to get through my head how ruthless our governments are. I thought most people were honest, but no, I learn the hard way.
Well our government officials are not immune to this, give it time and doctors will be crawling to us asking how they treat this nightmare.
We can only live in hope.
Cheers itchin
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Post by dkushner on Sept 16, 2012 17:12:30 GMT -5
The NIH Site allows questions. I just submitted the following: Why did the NIH post information that Morgellons is: duplication/trisomy of 1q42 11 q42 12 then remove the site, while the CDC maintains that it is a purely psychiatric condition? I have had Moregellons for 9 years and have lost my 25 year software engineering career as a result, and still have many serious co-infections and complications resulting from not being able to get any medical help because of the DP mis-diagnosis. Will NIH also attempt to minimize the seriousness and legitimacy of the infectious condition? The way CDC and doctors are handling this condition is causing as many problems and suffering as the condition itself. These organizations need only be honest to change this, even if they cannot provide treatment. Is this asking too much? REF Photos: www.flickr.com/photos/48534271@N03/Well, I have not had a reply from NIH yet. They listed that they will reply to all questions within 4-5 days. Nothing yet!! Personally, I doubt that this was a sincere offer to answer questions, at least not questions like mine, and certainly not from any point of view that Morgellons might be (actually IS) a real condition. They might use disclaimers in their replies though, along the line that "if it is real, it is not serious". They might answer questions like ... Is Morgellons real? [and the reply would be] .. we do not know, but the CDC thinks that it is a form of DP. Then they will express something caring like we know that even though the symptoms are imagined that they cause suffering. OR a question like .. Is it contagious? [with a relply like], we do not know, but it appears not to be. There is NO EVIDENCE .. blah blah blah. The funny thing (about evidence) is that if you have large pieces of your body infected and there are millions of tiny freaky beasts growing in your skin, they [doctors] will not look at it, will not test it, they will ignore it and tell you that they cannot help you. then they will document it that they did not see anything in your skin and that they believe you are DP. Then in their next breath to a colleague, they will say that Morgellons is not real, that we (suffering) are crazy and costing them money and time. We all should be ashamed of ourselves taking important time from them with our delusions, and picking!! We are picking at our skin!! Well, if they had the monsters in their skin and serious health problems as a result of no getting any medical help they might feel differently and might be picking too! It doesn't bother me as much that they made serious mistakes that result in our suffering, more shocking to me that now that it's becoming clearer that this is real and serious, they are more concerned with being right, and not being liable than they are with peoples health. They are willing to lie to cover up their mistakes at our expense. People are suffering, cannot work, are afraid for their close family, and are committing suicide in some cases. Come'on medical establishment .. it takes 10 years to find a treatment or cure for conditions in some cases, but it should not take 10-20 years to realize (admit) that there is a serious medical condition!! Morgellons is obvious if you look!! When I called the doctor and told him that the symptoms had grown worse and were now very visible, in my ears, and I asked to come in, I was told to ignore the symptoms and they would go away, and that he was discontinuing the little medication he was giving me, and that he would be on vacation for the next few weeks and not to call again for at least that long. When I called again a few days later because I was in fear for my life, I was told he was not there (I could hear him in the background). With another doctor, when I told her that the co-infection was trematode worm (because the symptoms were unique and obvious), that now I had blood and parasite eggs in my stool, she told me never to call back nd that she could not help me with my delusions. I had all the symptoms and hundreds of eggs and blood in my stool in cycles every 3 months for a year and a half until I bought bitricide from overseas, and that killed it within a couple days. I have perm damage to my health from this!! It coulod easily have been confirmed be THEM (yes, them - doctors). THERE IS NO EVIDENCE, BECAUSE DOCTORS ARE NOT WILLING TO LOOK AT THE SYMPTOMS WHEN THEY ARE VISIBLE!!!! - d
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bluesky
Junior Member
In memory of Dorothy
Posts: 63
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Post by bluesky on Sept 17, 2012 11:23:22 GMT -5
I also wrote to the NIH, asked them for their clinical or scientific data linking Morgellons to "rare or genetic" diseases. Waiting since the 5th. No reply yet. Resubmitted my question today. Noted that they say replies are sent within 5-10 business days.
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Post by Lynn on Sept 18, 2012 10:27:37 GMT -5
Hi BlueSky I wonder if the absents of response was there way of ignoring you or just a casual loss of work. I was fooling around with a search and found this. Even though it may have nothing to do with us I would like to make sure if I knew how. Did the Dr. really get robbed and murdered or did he research something and someone shut him up? www.abc27.com/story/19572350/nih-researcher-killed-near-baltimore-homeIn Light Lynn/TorpedoLynn DHuskers I thought your photo bucket was very well put together and what a shame a Dr. has to put on such huge blinders not to see what it is. Its like the king who wore no clothes but in reverse. No one sees what is literally beholden to the eye.
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Post by violet on Sept 18, 2012 11:49:03 GMT -5
Hi BlueSky I wonder if the absents of response was there way of ignoring you or just a casual loss of work. I was fooling around with a search and found this. Even though it may have nothing to do with us I would like to make sure if I knew how. Did the Dr. really get robbed and murdered or did he research something and someone shut him up? www.abc27.com/story/19572350/nih-researcher-killed-near-baltimore-homeIt does make us wonder, doesn't it. On the other hand, that is not the greatest part of town, and if he was walking near the park, even more so. There are so many senseless murders here in Baltimore every day. It's a disgrace.
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bluesky
Junior Member
In memory of Dorothy
Posts: 63
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Post by bluesky on Sept 20, 2012 16:07:36 GMT -5
Ok, got a reply today from Genetic and Rare Diseases (GARD) Information Center to my question: Please cite your clinical or scientific evidence supporting the inclusion of Morgellons as a 'rare or genetic disease'. Dear Ms. XXXXXXXXXX, You sent an e-mail to the Genetic and Rare Diseases (GARD) Information Center about Morgellons. You asked why this condition is listed as a rare disease by the Office of Rare Diseases Research. The Office of Rare Diseases Research provides the Rare Diseases and Related Terms list for information purposes only and it is not an official list. Rare diseases terms are based on questions received by the Office of Rare Diseases Research, the Genetic and Rare Diseases Information Center, or the National Human Genome Research Institute where the disease prevalence is fewer than 200,000 people in the United States. The Office of Rare Diseases Research does not designate diseases as being rare for orphan drug status, that is conducted by the Office of Orphan Products Development at the Food and Drug Administration (FDA). If you have additional questions, you can contact Ms. Henrietta Hyatt-Knorr of the Office of Rare Diseases Research. Henrietta Hyatt-Knorr Director, Policy and Program Planning and Analysis Office of Rare Diseases Research National Center for Advancing Translational Sciences, NCATS, Catalyzing Innovation National Institutes of Health, DHHS E-mail: Henrietta.Hyatt-Knorr@nih.gov Telephone: (301) 435-6045 Also, we apologize that we were not able to respond sooner. Our stated timeframe for responding to inquiries is 5 to 10 business days, and due to the high number of requests we receive it typically takes the full 10 business days to receive a written response. Sincerely, Michelle Greenwood Information Specialist The Genetic and Rare Diseases Information Center was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health to provide responses to public information requests. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays), to respond to questions about genetic and rare diseases. PO Box 8126 Gaithersburg, MD 20898-8126 Toll-free: 1-888-205-2311 Telephone: 301-251-4925 TTY: 1-888-205-3223 Fax: 301-251-4911 E-mail: GARDinfo@nih.gov Web site: rarediseases.info.nih.gov/GARDImportant Disclaimer: The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Human Genome Research Institute or the Office of Rare Diseases Research at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
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