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Post by ruth on Apr 20, 2009 13:51:46 GMT -5
"What is the treatment? The concept we now find most useful has, as mentioned above, lead us to effective treatments. This MRF will continue to move through the necessary steps of fully characterizing the illness, understanding its biological mechanism, determining any involved agents, and identifying them in detail...and finally, refining treatment for rapid and complete recovery. We ARE moving rapidly now. We ARE seeing effective...though not yet always complete...treatment. Funds to bring in additional researchers, collaboration with credible institutions and individuals, and eventually entry of the NIH and full medical community, are the fuel needed to end the existence of this nemesis. If you wish to contribute towards these efforts, you are most welcome. Please visit our Advocacy/Volunteer page."
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Post by violet on Apr 20, 2009 14:45:52 GMT -5
"What is the treatment? The concept we now find most useful has, as mentioned above, lead us to effective treatments. This MRF will continue to move through the necessary steps of fully characterizing the illness, understanding its biological mechanism, determining any involved agents, and identifying them in detail...and finally, refining treatment for rapid and complete recovery. We ARE moving rapidly now. We ARE seeing effective...though not yet always complete...treatment. Funds to bring in additional researchers, collaboration with credible institutions and individuals, and eventually entry of the NIH and full medical community, are the fuel needed to end the existence of this nemesis. If you wish to contribute towards these efforts, you are most welcome. Please visit our Advocacy/Volunteer page." I think this statement could be perhaps a year old or so.
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Post by mrc on Apr 20, 2009 15:20:20 GMT -5
It also helps, to umm, share the treatment protocol ... ? There is another protocol coming soon that will actually be pubished that I think will be a great help.
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Post by bessie on Apr 20, 2009 15:42:26 GMT -5
Grady - "There is another protocol coming soon that will actually be pubished that I think will be a great help." Where is this protocol coming from? I heard there is a book in the works?? Bessie
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Post by bannanny on Apr 20, 2009 15:51:39 GMT -5
I've been told by someone who subscribed to my You Tube page that Dr. Wymore and 3 other doctors will be coming out with a protocol within the next few months. Course, I don't know the person who told me this, so ya never know.
Seems like there's been alot of this and that said tho lately, so maybe we'll hear something soon anyway eh?
hugs ~~ bannanny
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Post by rhorn2006 on Apr 21, 2009 5:03:46 GMT -5
I go in for my next doctors appointment this coming Thursday afternoon.. He was suppose to have gone to the April 4th conference and I guess he did.. He said that his main reason for going, rather than just getting it on DVD, was to talk "face to face" with Dr Wymore and all the others, to try and get a lead on what medications have been tried and have shown progress over the past year...
"If they chose to share any info with him, I will know and will post it here Thursday night" -->>
-->>>> Posted a retraction on this, farther down the thread ;D
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Post by mrc on Apr 21, 2009 9:01:28 GMT -5
I see a very real and serious problem here. This problem is not with the MRF but with obtaining treatment.
Suppose the MRF comes out and says you need this anti-parasitical and this antibiotic. Where are we going to obtain these exactly? I look perfectly healthy, without a test that says "Yep, you have it" no doctor in the world is going to prescribe those to me. This is going to create havoc, and a black market for these things that will come in from bad sources and cause harm and people will pray on us. I can even imagine folks breaking into pharmacy's to obtain them.
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Post by jj on Apr 21, 2009 10:22:55 GMT -5
I see a very real and serious problem here. This problem is not with the MRF but with obtaining treatment. Suppose the MRF comes out and says you need this anti-parasitical and this antibiotic. Where are we going to obtain these exactly? Agree, the problem is not with the MRF ........ or OSU, NMO, Staninger .... etc, or affiliates. This is multi-faceted and there are health risks and assessments that should be made by all including those suffering. Sufferers need to obtain treatment and need to be able to trust those they go to for treatment. Practitioners they go to need to trust the resources they have to feel confident enough to treat their patients without further harm to their health or well being. The resources need to feel confident in their findings in order to make them public to the Practitioners and their patients. Then there's publications which is another story where risk assessment as well as replicatable peer review also applies to both scientists and physicians. Some are willing to take more risks than others on all these avenues. If only it was easier because obviously we all would of liked answers yesterday.
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Post by mrc on Apr 21, 2009 10:56:06 GMT -5
Exactly JJ, I'm very worried about this actually. Now if all the ingredients were natural fine, maybe they will be but I doubt it. I am doing much better lately, see my latest blog post titled "Terrain" tinyurl.com/ch2kvbImagine the horror for those of who suffering terribly who cannot obtain a protocol that would be reportedly help others regain their lives, oh the desperation. If my family and kids were sufferng terribly and possibly dying would I consider stealing such medication? or taking risks and self treating by buying from untrustworthy sources overseas? Time will tell. I would rather see the MRF publish thier findings rather than some protocol, do they have any scientific findings they have not published? Who knows. Look at the guy that reports his cure with the Sulfa Drugs that require a prescription, I read that it went, what good is this going to do me? No doctor is going to prescribe anything to me, I look darn near perfectly healthy but am far from it.
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Post by violet on Apr 21, 2009 11:33:10 GMT -5
Exactly JJ, I'm very worried about this actually. Now if all the ingredients were natural fine, maybe they will be but I doubt it. I am doing much better lately, see my latest blog post titled "Terrain" tinyurl.com/ch2kvbImagine the horror for those of who suffering terribly who cannot obtain a protocol that would be reportedly help others regain their lives, oh the desperation. If my family and kids were sufferng terribly and possibly dying would I consider stealing such medication? or taking risks and self treating by buying from untrustworthy sources overseas? Time will tell. I would rather see the MRF publish thier findings rather than some protocol, do they have any scientific findings they have not published? Who knows. Look at the guy that reports his cure with the Sulfa Drugs that require a prescription, I read that it went, what good is this going to do me? No doctor is going to prescribe anything to me, I look darn near perfectly healthy but am far from it. We have to remember that doctors "first, do no harm." A good physician will not medicate without some solid evidence of what a person needs treatment for and what medications to give.
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Post by mrc on Apr 21, 2009 11:56:05 GMT -5
You couldn't have made my point any clearer violet, a protocol that requires a prescription without a diagnostic test will lead to sheer agony for our community cause none will be able to obtain it.
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Post by ruth on Apr 21, 2009 12:47:36 GMT -5
grady, i was on a sulfa drug, smz/tmp for about a 1 1/2 years. i pulsed with metrondiazole, & biltricide. i did rifampin for about the same length of time. (this did the best for me) i did cipro + pulsing for 2 years. everything kicks one part of it back. it just comes out of protection when the threat (abx.) is reduced. bessie, i was so hoping that 'mrf refining treatment' was written since the site has been revamped, that it was after december, when the 9 disciplines were to meet, that this was the treatment they were working on, refining............. i hadn't read this at mrf before, nor could i remember it being discussed here. so the protocol would be what savely prescribes?? and is that the one that is being refined?? i was hopeful yesterday, daydreaming at work at what it will be like to have this monkey off my back. now i am depressed.........think i'll ask for zoloft to get me thru a while longer.
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Post by bessie on Apr 21, 2009 13:15:56 GMT -5
Ruth - I never saw that part on the MRF site about refining the protocol. I actually never even knew there WAS a protocol endorsed by them that was going to be refined...maybe I'm misunderstanding what those statements mean! As far as prescribing abx, etc., without diagnostic tests - well, it happens all the time. In March of 2007, when I think this was really gearing up to explode, I developed some kind of "infection" or inflammatory response to something. I had a horrible dry cough that even RX expectorants wouldn't help, conjunctivitis, sinusitus, bronchitis. My throat and even that thing that hangs in the back of your mouth (the uvula) were bright red. No cultures were done, but I was prescribed a slew of meds (Z-pack was one) - none of which helped. After a week of barely being able to get out of bed I started taking my BIRDS'S "natural meds" - everything I had for them that stimulates immunity, plus vitamins, etc., and slowly started getting better. Funny thinking about that now, because six months later when I got on all the meds for Morgellons (from one of the Infectious Disease docs that treat this, again without any diagnostic tests), I ended up returning to natural methods. I got very sick taking the RX meds and remembered my experience in March, so I applied the same principles. It was a gut instinct that I had to get my BODY to function in a way that it would handle the problem. I was well into getting better when I hooked up with Staninger (I hadn't even heard of her in the beginning). When I saw that her approach was compatible with what I had been doing (but much more sophisticated), I went with her. Of course, it perplexes me that RX approaches seem to help people, too. Just one more inexplicable mystery about all of this.
Bessie
ps - Grady - the new protocol that is going to be published - are you referring to the book that I understand Dr. Staninger is writing? (I didn't hear that from her directly; I read it on Birdmites).
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Post by bessie on Apr 21, 2009 13:21:45 GMT -5
kmarie - I think you said one time that you've saved all the MRF reports? Maybe you can find where this was stated and fill in the part about the concept they find the most useful "as mentioned above" in?m What concept are they referring to here? "The concept we now find most useful has, as mentioned above, lead us to effective treatments. This MRF will continue to move through the necessary steps of fully characterizing the illness, understanding its biological mechanism, determining any involved agents, and identifying them in detail...and finally, refining treatment for rapid and complete recovery. We ARE moving rapidly now. We ARE seeing effective...though not yet always complete...treatment. Funds to bring in additional researchers, collaboration with credible institutions and individuals, and eventually entry of the NIH and full medical community, are the fuel needed to end the existence of this nemesis. If you wish to contribute towards these efforts, you are most welcome. Please visit our Advocacy/Volunteer page."
Bessie
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Post by mrc on Apr 21, 2009 14:10:40 GMT -5
No Bessie, I am hearing good things about this new Anu water, I am going to be trying some of it myself to see what happens, but like you, I'm staying all natural, seems to work better. This is the protocol Trish Springstead is working on with folks out in California. I didn't know Dr. Staninger was writing a book, I wish she'd get some more information out there, we really need to hear what she has to say in depth.
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Post by jj on Apr 21, 2009 14:29:57 GMT -5
Ruth, Honestly, I'm so sorry your feeling badly The wording you have referred to is within the FAQ's page. The websites look has changed over the years. The content has evolved and changed somewhat as well based on the ongoing advocacy, education, and research over the years. I believe the particular wording you are quoting was there starting in early 2007. Bessie, Yes, you have been misunderstanding what "statements mean". It would be best to not interject your perceptions based on things that have not occurred or not been said. This statement of yours for example; "These are important clues and are consistent with what Dr. Staninger says the black specks are - they are the "STARTERS" - they grow everything else - fibers, etc. The MRF had dna analysis done in the fall of 2007 on the black specks but would only state that the results were "inconclusive". Before the study, they had been commenting on their monthly reports that they were more interested in these than in the other things founds in Morgellons victims. If someone here has any clout with the MRF, perhaps they can be encouraged to release more detail?SS" Maybe you can provide the reports you continually bring up in reference to the above since you have spoken with 'authority' about it since you first came to this board. Again, as stated numerous times I believe you misunderstood whatever you read or what was articulated to you. Yet, you ignore that and continue to bring it up over and over again based on your perceptions & misunderstanding. That does not help people to insinuate something that is not. Why continue to do that? If you read the FAQ's page you will find the "concept" and what is referred to above it. Thank you for this consideration.
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Post by felixwillford on Apr 21, 2009 14:47:27 GMT -5
kmarie - I think you said one time that you've saved all the MRF reports? Maybe you can find where this was stated and fill in the part about the concept they find the most useful "as mentioned above" in?m What concept are they referring to here?Bessie Hi Bessie, I never said I save all MRF reports, However; when in question, I do go to the archives on the wayback machine internet archives and pull up web pages "as they appeared" on a certain date. As far as this whole thread and topic of "refining treatment", I have been lost on this whole thread and have no clue what ANYBODY is talking about. I never saw any treatment on the MRF that I can remember. Right now, I have lots of things going on at home so maybe I am just not "understanding" what everyone here is disucssing because of "personal business" that I must attend to this week. If anyone can explain what this thread is about, it is much appreciated. Sorry to appear so stupid, but gosh I am sooooooooooo lost here. I do remember reading about 9 scientist/diciplines going over results but that is all I can ascertain from this thread or remember reading on a MRF newletter. Never saw or heard of a treatment protocol on MRF or "refinement" of one. Only what Ginger and Dr. Stanniger have offered for treatments is what I know of. I'd love to help if I KNEW or someone would explain what this topic/thread is suppose to be about. Sincerely, Kmarie
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Post by violet on Apr 21, 2009 14:59:02 GMT -5
grady, i was on a sulfa drug, smz/tmp for about a 1 1/2 years. i pulsed with metrondiazole, & biltricide. i did rifampin for about the same length of time. (this did the best for me) i did cipro + pulsing for 2 years. everything kicks one part of it back. it just comes out of protection when the threat (abx.) is reduced. bessie, i was so hoping that 'mrf refining treatment' was written since the site has been revamped, that it was after december, when the 9 disciplines were to meet, that this was the treatment they were working on, refining............. i hadn't read this at mrf before, nor could i remember it being discussed here. so the protocol would be what savely prescribes?? and is that the one that is being refined?? i was hopeful yesterday, daydreaming at work at what it will be like to have this monkey off my back. now i am depressed.........think i'll ask for zoloft to get me thru a while longer. I think the treatment the MRF spoke of refining was written by Dr. Harvey when he had posted his theory on what Morgellons is, about a year or so ago, but his post was taken off shortly after it was posted. I believe Dr. Harvey claimed that they knew what most of the pathogens were, but they wanted identify all before giving a complete report. I think--if I recall correctly--that he then spoke of a possible treatment but that the completion of the identification of the pathogens had to happen before the treatment could be "refined."
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Post by felixwillford on Apr 21, 2009 15:04:33 GMT -5
Thanks Violet,
Oh............, it that what this is about Ruth or something else because I am really lost in this thread?
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Post by mrc on Apr 21, 2009 15:11:57 GMT -5
I think you are right voilet, it would make sense for the MRF to publish a protocol without defining exactly what it is they are treating, this thread is a non-starter. I hearby declare this thread dead and all of the 1s and 0s should be recycled and saved for other threads. Please, if you are typing on another thread consider coming over here and copying and pasting letters such as "t" and "c" so they can be resused. The internet is a precious thing to waste.
Wow, I'm losing it, is it Friday yet?
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