Re: Re: Hostile Take over time

[Guest guest]

I know it was that way for me when I was told I had scleroderma. There were no good choices so we had to think outside the box. It was hard to get information with the internet not so developed as it is now. My husband had the same thing with RA. (I don't want to get started....actually I think we had undiagnosed Lyme disease for a long, long time which segued into autoimmune.) At any rate, for autoimmune diseases the www.roadback.org was the organization that pushed for a minocycline study which a brave soul at Harvard took on, bucking the entire rheumatology conventional thinking. This is what you all are doing for LDN! You cannot believe how hard it was to get any doctor to prescribe life-saving mino!

You people are pushing the envelope and forging new paths with LDN! I went through this process with antibiotics for autoimmune. It has now come to pass that doctors are somewhat less ignorant and will prescribe antibiotics, although the accepted protocol by the average doctor seems to be far less treatment than I would think was warrented.

It may sound silly, but congratulations to this group! I have been there. I was in an early Harvard scleroderma study.

[low dose naltrexone] Re: Hostile Take over time

I agree! The MS Society (upper management) has no interest in any "cure/help/management" for MS unless it involves the drugs aforementioned.

As a former user of Prokarin (http://www.edmsllc.com/), and having had many one-on-one talks with Elaine of EDMSLLC, I KNOW that the MS Society literally turned their backs on Elaine when she went to them, with information about Prokarin, and called it "snake oil", despite the evidence from patients for whom it helped a great deal. It worked very well for me, until it didn't. Not sure why, but after sharing my experiences with Elaine, she told me about LDN, and suggested that I try it (despite the obvious conflict of "business" interest). LDN is just much, much more convenient to use for me and have experienced even more positive results from LDN.

Funny, both Prokarin and LDN are inexpensive treatments. Hmmmm .... So, with that, I have no doubt that the MS Society has no interest in any "drug treatment" that doesn't cost a lot of money, and isn't introduced by "so-called Big Pharma". Sure, there are a lot of processes we are not privi to ... but We Do Know and question what we learn from action/or lack of. And, that's what I see in the MS Society.

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