Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I didn't know what to say to willysnout that I didn't already post on MGH. tasmaid wrote a great response though. tasmaid, if you're in one of these groups, thanks for your words of wisdom, I hope you don't mind my sharing it. willysnoutMember Posts: 3020From: Boston, MA RRMS, 8/02Registered: May 2002 posted 09-17-2003 10:16 AM quote: Originally posted by ScoobyDoo2:Subject: One year on LDNDate: Thu Sep 11, 2003 12:14 pmHi all... I just wanted to share with you my One Year Anniversary of being on LDN. I started taking it on Sept. 6th 2002 and have had nothing but positive days since. Of course, I still have a few MSey days here and there. But, my life is nothing like it was before I was off all my other MS medications and on the LDN. I'm interested in the LDN anecdotes, but the overpromotion of this stuff is a real red flag. http://www.quackwatch.org/01QuackeryRelatedTopics/altbelief.html ------------------Make sure to stop and smell the roses, before you lose your sense of smell. IP: Logged tasmaidMember Posts: 728From: hobart,TasmaniaRegistered: Oct 2000 posted 09-17-2003 04:29 PM I would agree about overpromotion or red flag if any ONE person or company was making a fortune out of LDN. As it is we are pockets of people world wide with neuro's or pcp's who while sceptical were never-the less progressive enough to order it as they could see it was harmless otherwise.I think you will find that the majority of LDNer's had to really push to gain access to it.The groundswell is from individuals who have gotten their life back and for some, big time. I would say anyone who has come out of a wheelchair or off a cane has every right to jump for joy and be heard.Is it a placebo? Is it remission? I think there are many people in this groundswell who were spms and no longer could take the crabs or have not experienced remission for many years.Why can't individual anecdotes be as valuable as the FDA's self serving, self interested, pharmaceutical board of director pocket lined with kickback, yes men? The reason statins are now being trialed is because when ordered for one common thing it was found by chance to help something else with MSer's. Naltrexone didn't have that luxury since it was only ever used for drug addicts and alcoholics and I doubt many MSer's fell into that category as well as the fact that the dose for auto-immune use is miniscual and wouldn't have helped at the original dosage anyway. It's cheap, it's easy to use and it may work for many, wow, what more could anyone ask for?Do the FDA care? No-one benefits from it financially today, not even the creators of it since generics are readily available from other companies. Will anyone bother to spend millions to gain nothing from a trial? Let's hope Bihari does get a trial going but then for the sceptics he's already made enough noise about this wonder drug to sound selfserving and they'd disdain to listen to him. I've never paid Bihari, he doesn't even know I've followed him in my little corner of the world. If Crab's don't work (which they don't for many) where would you turn? If your body just keeps falling apart and races into spms or cpms what wouldn't you try? I think LDN is here to stay and maybe in a few more years when neuros get to see the effect on a larger scale (like any trial would do) it will become just another regular drug in the battle. It'll work for some and that's all we have in this imperfect world at the moment, some drugs working for some people some of the time. ------------------"A man may esteem himself happy when that which is his food is also his medicine."-Thoreau. I love my endorphins (natural brain opiate)which we get from chocolate, chili, exercise, great sex or LDN [url=http://www.low dose naltrexone.org] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 except maybe that I will never get to take it because the makers of the crabs of this world may squash it like a bug the first time they find their meal-ticket threatened. It's a real worry for investors in the pharma industry... --- In low dose naltrexone , " LarryGC " <larrygc@s...> wrote: > I didn't know what to say to willysnout that I didn't already post on MGH. tasmaid wrote a great response though. > > tasmaid, if you're in one of these groups, thanks for your words of wisdom, I hope you don't mind my sharing it. > > > > > > > > > > willysnout > Member > Posts: 3020 > From: Boston, MA RRMS, 8/02 > Registered: May 2002 > posted 09-17-2003 10:16 AM > -------------------------------------------------------------------- ------ > > quote: > -------------------------------------------------------------------- ---- > Originally posted by ScoobyDoo2: > Subject: One year on LDN > Date: Thu Sep 11, 2003 12:14 pm > > Hi all... I just wanted to share with you my One Year Anniversary of being on LDN. I started taking it on Sept. 6th 2002 and have had nothing but positive days since. Of course, I still have a few MSey days here and there. But, my life is nothing like it was before I was off all my other MS medications and on the LDN. > -------------------------------------------------------------------- ---- > > > I'm interested in the LDN anecdotes, but the overpromotion of this stuff is a real red flag. > http://www.quackwatch.org/01QuackeryRelatedTopics/altbelief.html > > > ------------------ > > Make sure to stop and smell the roses, before you lose your sense of smell. > > IP: Logged > > tasmaid > Member > Posts: 728 > From: hobart,Tasmania > Registered: Oct 2000 > posted 09-17-2003 04:29 PM > -------------------------------------------------------------------- ------ > I would agree about overpromotion or red flag if any ONE person or company was making a fortune out of LDN. As it is we are pockets of people world wide with neuro's or pcp's who while sceptical were never-the less progressive enough to order it as they could see it was harmless otherwise. > I think you will find that the majority of LDNer's had to really push to gain access to it. > The groundswell is from individuals who have gotten their life back and for some, big time. I would say anyone who has come out of a wheelchair or off a cane has every right to jump for joy and be heard. > Is it a placebo? Is it remission? I think there are many people in this groundswell who were spms and no longer could take the crabs or have not experienced remission for many years. > Why can't individual anecdotes be as valuable as the FDA's self serving, self interested, pharmaceutical board of director pocket lined with kickback, yes men? > The reason statins are now being trialed is because when ordered for one common thing it was found by chance to help something else with MSer's. Naltrexone didn't have that luxury since it was only ever used for drug addicts and alcoholics and I doubt many MSer's fell into that category as well as the fact that the dose for auto-immune use is miniscual and wouldn't have helped at the original dosage anyway. > > It's cheap, it's easy to use and it may work for many, wow, what more could anyone ask for? > Do the FDA care? No-one benefits from it financially today, not even the creators of it since generics are readily available from other companies. Will anyone bother to spend millions to gain nothing from a trial? > > Let's hope Bihari does get a trial going but then for the sceptics he's already made enough noise about this wonder drug to sound selfserving and they'd disdain to listen to him. I've never paid Bihari, he doesn't even know I've followed him in my little corner of the world. > > If Crab's don't work (which they don't for many) where would you turn? If your body just keeps falling apart and races into spms or cpms what wouldn't you try? > > I think LDN is here to stay and maybe in a few more years when neuros get to see the effect on a larger scale (like any trial would do) it will become just another regular drug in the battle. > > It'll work for some and that's all we have in this imperfect world at the moment, some drugs working for some people some of the time. > > > ------------------ > " A man may esteem himself happy when that which is his food is also his medicine. " -Thoreau. > > I love my endorphins (natural brain opiate)which we get from chocolate, chili, exercise, great sex or LDN > > [url=http://www.low dose naltrexone.org] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 That was great Larry...Thanks for posting. I also found the Quackwatch site interesting....I don't put LDN in the same catagory, of the products, that they are talking about....but there is a lot of truth to the fact that we are a very suseptable group, us msers, and we want to believe that some of these vitamins and herbs and yes even LDN is working to help us. I have been on line ordering everything under the sun......vitamins I hear are helping people, here and other forums. Anything, not to have to go back to the horrible *abcr* alternatives. But I cancelled the orders for most of it....came to my senses....I mean this is rediculous....I am an intellegent human being. So, speaking only for myself, I will be ingesting only the meds and vitamins I'm sure are helping me, and no more of the happy pills, with a question mark behind them. LDN is still my MS med of choice, because I believe it is helping my ms to stay where it is....a one-a-day....calcium+D....and of course cranberry caps to ward off UTI. I will try to eat right, but no promises...lol.....there has to be some comfort food in a persons life. I think I will feel better, if I quit spazzing about what's going to work and what isn't. Good wishes to all, Sally --- In low dose naltrexone , " LarryGC " <larrygc@s...> wrote: > I didn't know what to say to willysnout that I didn't already post on MGH. tasmaid wrote a great response though. > > tasmaid, if you're in one of these groups, thanks for your words of wisdom, I hope you don't mind my sharing it. > > > I'm interested in the LDN anecdotes, but the overpromotion of this stuff is a real red flag. > http://www.quackwatch.org/01QuackeryRelatedTopics/altbelief.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 Yep, that's what a lot of people say. We're just looking for ANYTHING that works. The thing is, HOW do you know when you've found something? I think the way I went about it shows me, for me, that LDN works, no question about it. I wasn't taking any prescriptions and was only taking some vitamins every day. When I started the LDN, I stopped EVERYTHING else. In July I added B1, and got some B50 complex. I was taking the B1 every day the first 3 weeks in July, and the last 2 weeks of August... for mosquito control since I was planning to be outdoors. I take coral calcium or calcium/mag/D here and there, and some C at times, and whatever else we have, here and there. I never liked the idea of overdosing on vitamins every day. I always take them sporadically. Getting used to taking LDN every day wasn't easy, and I've missed 4 windows so far (but 3 of them within the DST hour). I've also been taking Advair 100/50 since I started camping in July, but I haven't taken it regularly either. If I don't take it between 11 and 1, I just miss it. ----- Original Message ----- From: Sally low dose naltrexone Sent: Thursday, September 18, 2003 01:10 Subject: [low dose naltrexone] Re: "Overpromotion" That was great Larry...Thanks for posting. I also found the Quackwatch site interesting....I don't put LDN in the same catagory, of the products, that they are talking about....but there is a lot of truth to the fact that we are a very suseptable group, us msers, and we want to believe that some of these vitamins and herbs and yes even LDN is working to help us. I have been on line ordering everything under the sun......vitamins I hear are helping people, here and other forums. Anything, not to have to go back to the horrible *abcr* alternatives. But I cancelled the orders for most of it....came to my senses....I mean this is rediculous....I am an intellegent human being. So, speaking only for myself, I will be ingesting only the meds and vitamins I'm sure are helping me, and no more of the happy pills, with a question mark behind them. LDN is still my MS med of choice, because I believe it is helping my ms to stay where it is....a one-a-day....calcium+D....and of course cranberry caps to ward off UTI. I will try to eat right, but no promises...lol.....there has to be some comfort food in a persons life. I think I will feel better, if I quit spazzing about what's going to work and what isn't.Good wishes to all,Sally Quote Link to comment Share on other sites More sharing options...
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