To Aegis:

[Guest guest]

Hi Aegis,

Actually, I live in Canada - Edmonton, Alberta, to be exact. So phooey on the NMMS! I have been in touch with our local MS Society branch, and they at least are listening to what I have had to say. And my neuro is prescribing LDN. And all my visits to him are free. Love Canada.

But I know what you are saying, and I agree with you about 99%. I am not as simple as I might sound. And thanks for your imaginary replies. I need all the negative feedback I can get to sharpen whatever weapons I decide to use.

I am using a softer approach than appears to have been used with the NMMS. Whether or not that will get me any farther, I don't know. But I am going to keep on trying. Up here we don't have quite as many people to have to convince as you do, and for us Canadians MS is I think even a proportionately greater problem than it is for you.

I have only been using LDN for about two weeks, so it is a little early for me to talk with the courage of my own convictions, but I trust the time will come.

Anyhow, wish me luck.

Tom from Edmonton

----- Original Message -----

From: mboylebradley

low dose naltrexone

Sent: Wednesday, May 26, 2004 6:53 PM

Subject: [low dose naltrexone] Re: Getting to the MS societies.....

Aegis .. thinks you are on a role .. Tom I liked your thoughts and efforts and worth a shot. Aegis .. I would love to hear how you would phrase the LDN story. When it comes to putting pen to paper or fingers to keyboard it is quite a challenge .. a remarkable story that can be told in many different ways to many different audiences. Quite a challenge Aegis .. Go for it!All the Best> Tom,> Aegis thinks life is not so simple and wishes it was. But to > give you some insight as to the kind of questions that may go > through the NMMS think tank, Below are IMAGINARY responses by a > skeptic.> > > 1. LDN is safe at the dosage recommended for MS (I think there is > general agreement on this?). > WHO CARES WHAT A FEW HUNDRED LDN USER'S THINK ?. HOW DO YOU KNOW > THAT IT SAFE ?. HAVE YOU DONE ANY TESTING ?. WHAT ABOUT TOLERANCE ?, > WHAT ARE THE CONSEQUENCES OF LONG TERM NEURAL RECEPTOR BLOCKADE ?, > WHAT ABOUT EFFECTS ON MENTAL ILLNESS, WHAT ABOUT EFFECTS ON OTHER > ILLNESSES, WHAT ABOUT EFFECTS WITH AVONEX AND ON AND ON..> > > > > 2. Since there is no certainty what causes MS anyway, taking > something that may enhance the immune system is not necessarily a > bad thing,> AND HOW DO YOU KNOW THAT LDN ENHANCES THE IMMUNE SYSTEM ?, JUST > BECAUSE YOU READ IT ON A WEBSITE ?. WHAT IS THE DATA ON THAT ?, HAVE > YOU NOT READ OUR WEBSITE, WHICH SAYS YOU SHOULD NOT ENHANCE THE > IMMUNE RESPONSE ? > > > > 3. There are quite a large number of positive anecdotal stories > that support the use of LDN; there are very few - if any - negative > stories regarding its use.> NMSS DOES NOT RELY ON STORIES IN MAKING RECOMMENDATIONS. PLEASE SEE > A FORTUNE TELLER FOR THAT.> > > > > 4. Clinical studies have not been done not because somebody thinks > they might fail, but because naltrexone is an "old" and inexpensive > drug already available for "off label" use, and therefore there is > no incentive for profit minded drug companies to spend money on > clinical trials, at least as things now stand.> WRONG REASON, IF LDN WOULD WORK, WE WOULD IDENTIFY OTHER SIMILAR > COMPOUNDS THAT COULD BE SOLD FOR BILLIONS, WE COULD DO COMBINATION > THERAPY, TO SEE IF TWO DRUGS ARE BETTER THAN ONE, E.G. C+ ldn.> > > > > 5. According to the Internet site www.remedyfind, which is a non > biased reporting format for people with all kinds of diseases, LDN > is the leading suggested treatment for MS.> YOU MUST BE JOKING!, YOU TAKE THE WORD OF AN OBSCURE SITE OVER OUR > GOSPEL TRUTH BACKED BY BILLIONS OF $$ AND THE BEST ACADEMICS ?> > Tom, the reality is that if you believe in LDN, go ahead and take > it. If you want your neuro to believe in LDN, show the trial data.> > Its as simple as that. > > Aegis> > > > They could quote facts like these, perhaps, without actually > expressing an opinion, and word would circulate out to a lot of > subscribers that have never heard of LDN.> > > > I know how frustrating it is, but developing an increasingly > negative approach with the Societies isn't going to do anybody any > good. We will still benefit from the Societies, and they will still > exist because of us, long after the LDN controversy goes away.> > > > Barring all the above, what about just writing Letters to the > Editor? MS publications aren't usually very large - a number of > supportive letters confirming the personal satisfaction of users of > LDN should be noticed and hopefully do at least a little bit of good?> > > > Just some thoughts.> > > > Tom from Edmonton