Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 there is oodles of empirical data out there. go here http://www.skipspharmacy.com/ldn.shtml scroll down and you can see skips presentation from last years ldn conference when you hear Dr Phil Boyle on the DVD you will get it (Adam is working really hard to get this done) its not lie this drug has never gone through double blind clinical trials for safety - and that's at 50 mg. and you guys take what--up to 4.5? so as dr Phil says " first rule do no harm" mission accomplished he can't understand why doctors are not lining up to prescribe ldn. Dr Crowley said when I interviewed him that he thought that people were going to sue doctors for NOT offering LDN as an alternative. that was pretty strong language. fact one: this is not an experimental drug: its an off label use of an already approved medication--which is perfectly legal. fact 2: there is tons of data out there that it does something for slowing down the progression of ms with very little side effects as compared to the other ms drugs talking about the DVD -I've given Adam very little to do so he can get this thing edited. Now this is where we are having an issue and that is what to charge. The pharmacy spent a lot of money sending Adam and I up to video tape this. and it will be hours for Adam to edit. I did all the prelim work which took hours. and that's our contribution to the cause. when I went up there I had no idea how important this was going to be. and now hanging out here and preparing for a documentary its not just to you guys but I think vital to way medicine is practiced --i want to at least be able to start on a conversation with these doctors. and I think the best way is to have something that looks good- and professional --- Adam found us a good place that will print the labels and copy info for a very decent price if I order 50 -which I'm going to do. so we are going to cost it out basically to cover our costs which I think is fair. what do you guys think? cyndi [Norton AntiSpam] Re: [low dose naltrexone] LDN and testosterone use in RRMS Something occurred to me while reading this article. They only needed 10 people for this study. It must not have been too expensive. Why can't we support a smaller study like this for LDN and have some kind of reporting outcome from it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Very cool of your office to do. Aletha [Norton AntiSpam] Re: [low dose naltrexone] LDN and testosterone use in RRMS Something occurred to me while reading this article. They only needed 10 people for this study. It must not have been too expensive. Why can't we support a smaller study like this for LDN and have some kind of reporting outcome from it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Cind, Good morning hope you are having a good day. I am impressed with your work with the newsgroup. I am interested in finding a few key people who are willing to become organizers to force this clinical trial to happen and to do so quickly. I would love to chat with you about this. Peregoy 908 601 3770Cyndi Lenz <psychrn@...> wrote: there is oodles of empirical data out there. go here http://www.skipspharmacy.com/ldn.shtml scroll down and you can see skips presentation from last years ldn conference when you hear Dr Phil Boyle on the DVD you will get it (Adam is working really hard to get this done) its not lie this drug has never gone through double blind clinical trials for safety - and that's at 50 mg. and you guys take what--up to 4.5? so as dr Phil says " first rule do no harm" mission accomplished he can't understand why doctors are not lining up to prescribe ldn. Dr Crowley said when I interviewed him that he thought that people were going to sue doctors for NOT offering LDN as an alternative. that was pretty strong language. fact one: this is not an experimental drug: its an off label use of an already approved medication--which is perfectly legal. fact 2: there is tons of data out there that it does something for slowing down the progression of ms with very little side effects as compared to the other ms drugs talking about the DVD -I've given Adam very little to do so he can get this thing edited. Now this is where we are having an issue and that is what to charge. The pharmacy spent a lot of money sending Adam and I up to video tape this. and it will be hours for Adam to edit. I did all the prelim work which took hours. and that's our contribution to the cause. when I went up there I had no idea how important this was going to be. and now hanging out here and preparing for a documentary its not just to you guys but I think vital to way medicine is practiced --i want to at least be able to start on a conversation with these doctors. and I think the best way is to have something that looks good- and professional --- Adam found us a good place that will print the labels and copy info for a very decent price if I order 50 -which I'm going to do. so we are going to cost it out basically to cover our costs which I think is fair. what do you guys think? cyndi [Norton AntiSpam] Re: [low dose naltrexone] LDN and testosterone use in RRMS Something occurred to me while reading this article. They only needed 10 people for this study. It must not have been too expensive. Why can't we support a smaller study like this for LDN and have some kind of reporting outcome from it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 I would definitely purchase this. Wish me luck . . . I visit my neuro tomorrow! Maureen [Norton AntiSpam] Re: [low dose naltrexone] LDN and > > testosterone use in RRMS > > > > Something occurred to me while reading this article. They only > > needed 10 > > people for this study. It must not have been too expensive. Why > > can't we > > support a smaller study like this for LDN and have some kind of > > reporting > > outcome from it? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 That's always a tough question. The lower the price, the more you'll sell and the more likely you are to recover costs, but the market is relatively small. I recently paid $54, including shipping, for a 2 DVD set of 4 hrs. of well documented footage of one of my favorite master boat builders going through the entire process of building one of his hulls. A similar scenario. Technically an amateur production, but VERY well done and the topic is relatively obscure for a limited customer base. I feel I got a great deal. I would be hesitant to pay that much for this DVD unless it was of comparable length and content quantity (immense wealth of knowledge). For $20 I wouldn't flinch to use it as a tool to spread the word. 50 x $20 probably isn't going to cover your costs, though. If no one thinks it tacky, perhaps a survey question on this group, how many feel strongly they would buy at each of 3 or so given prices? Cyndi Lenz wrote: > there is oodles of empirical data out there. > go here > http://www.skipspharmacy.com/ldn.shtml > scroll down and you can see skips presentation from last years ldn > conference > when you hear Dr Phil Boyle on the DVD you will get it (Adam is > working really hard to get this done) > its not lie this drug has never gone through double blind clinical > trials for safety - and that's at 50 mg. and you guys take what--up to > 4.5? > so as dr Phil says " first rule do no harm " mission accomplished > he can't understand why doctors are not lining up to prescribe ldn. Dr > Crowley said when I interviewed him that he thought that people were > going to sue doctors for NOT offering LDN as an alternative. > that was pretty strong language. > fact one: this is not an experimental drug: its an off label use of an > already approved medication--which is perfectly legal. > fact 2: there is tons of data out there that it does something for > slowing down the progression of ms with very little side effects as > compared to the other ms drugs > > talking about the DVD -I've given Adam very little to do so he can get > this thing edited. Now this is where we are having an issue and that > is what to charge. The pharmacy spent a lot of money sending Adam and > I up to video tape this. and it will be hours for Adam to edit. I did > all the prelim work which took hours. and that's our contribution to > the cause. > > when I went up there I had no idea how important this was going to be. > and now hanging out here and preparing for a documentary its not just > to you guys but I think vital to way medicine is practiced --i want > to at least be able to start on a conversation with these doctors. > > and I think the best way is to have something that looks good- and > professional --- > > Adam found us a good place that will print the labels and copy info > for a very decent price if I order 50 -which I'm going to do. > > so we are going to cost it out basically to cover our costs which I > think is fair. > > what do you guys think? > > > > cyndi > > > > > [Norton AntiSpam] Re: [low dose naltrexone] LDN and > testosterone use in RRMS > > Something occurred to me while reading this article. They only > needed 10 > people for this study. It must not have been too expensive. Why > can't we > support a smaller study like this for LDN and have some kind of > reporting > outcome from it? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 No offence to this wonderful group, but the group as a whole has had a history of saying yes they would contribute, or purchase a book if it is written, or donate a certain amount to a funding project for LDN if it is up and going etc, and then not going through with it. This has happened on several occasions. It is understandable that many from this group do not have much money etc., but it is best to be honest up front as people have invested money and time and not had the break-even that they had hoped for. Hope I don't sound negative, but I don't want anyone to lose money or time if there is not a genuine expected outcome. My best Aletha [Norton AntiSpam] Re: [low dose naltrexone] LDN and >> testosterone use in RRMS >> >> Something occurred to me while reading this article. They only >> needed 10 >> people for this study. It must not have been too expensive. Why >> can't we >> support a smaller study like this for LDN and have some kind of >> reporting >> outcome from it? >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 54 dollars-holy moly! i bought this sailing video and when we got it -it was brutally terrible -so bad i called the distributors and told they need to actually watch the stuff they are selling- my worse work when i first got started was better than this. I'm talking like 10 bucks plus postage -again it depends on how much of a price we can get to make the copies I figure this- when we left to go on this journey we had no idea what was going happen. -honestly- but I knew if all we did was film the day for Dr Glick and catch the essence so you guys could have this to see then that would be fine. then this incredible thing happened-I met Anne Boyle Bradley and her brother dr Crowley and there was so much positive energy I realized that all of us, me , skip and Adam were on this mission for you guys-i know this sounds really corny. not only could this open up a discussion for you guys and your doctors but it could really open up a discussion about how your medical care is delivered. if all I do is start a positive conversation then I'll be happy. at any rate the expense of getting there, staying there, coming home, tapes, editing all that is our contribution --because as Dr Skip says WE WANNA (actually what he says is YOU GOTTA WANNA) we also paid to have all the manuals printed. and that was our pleasure. I went to to see how it was going and he was just moving along so I'll keep you updated cyndi [Norton AntiSpam] Re: [low dose naltrexone] LDN and> > testosterone use in RRMS> >> > Something occurred to me while reading this article. They only> > needed 10> > people for this study. It must not have been too expensive. Why> > can't we> > support a smaller study like this for LDN and have some kind of> > reporting> > outcome from it?> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Althea I'm doing this anyway-- I have no expectation except to finish it and make it available and then finish my documentary (of which I have no patient volunteers at this time--cough cough) (I should have a video contest) and put it out there-- i just feel guilty for charging for it because i know many you guys are on disability and don't have much money. ---so I'm trying to figure what is fair and also let Dr Skip know because he feels the same way I do. I think if we could afford it he would just give you LDN. I'm working on this other dvd (its a nightmare) for a community animal blood bank- they asked me to do somethng very simple and it turned out to be the video from hell- they asked me to create a video so they could show people how to infuse and deal with this dog blood. They aea non-profit animal blood bank so i talked skip into sponsoring the production. adam and I put hours-about 300 hours so far and we are almost done- but these people think they are going to sell it and I keep on telling them forget it -no one will buy so you need to find someone to pay to distribute it - so we were at this vet meeting in baltimore last year and we went to the people who make all the stuff you need to do this and they were all happy to write checks. this is the way it works in -you know- the medicalwork-you get grants from drug companies. but then I know for sure I would asked to compromise my information and I won't do that. so it needs to be people -powered. andin the end thats the best way . cyndi -- Original Message ----- From: Aletha Wittmann low dose naltrexone Sent: Wednesday, May 03, 2006 3:34 PM Subject: [Norton AntiSpam] Re: [low dose naltrexone] studies & the dvd No offence to this wonderful group, but the group as a whole has had a history of saying yes they would contribute, or purchase a book if it is written, or donate a certain amount to a funding project for LDN if it is up and going etc, and then not going through with it. This has happened on several occasions. It is understandable that many from this group do not have much money etc., but it is best to be honest up front as people have invested money and time and not had the break-even that they had hoped for.Hope I don't sound negative, but I don't want anyone to lose money or time if there is not a genuine expected outcome.My bestAletha [Norton AntiSpam] Re: [low dose naltrexone] LDN and>> testosterone use in RRMS>>>> Something occurred to me while reading this article. They only>> needed 10>> people for this study. It must not have been too expensive. Why>> can't we>> support a smaller study like this for LDN and have some kind of>> reporting>> outcome from it?>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 well that good -- we do honestly -- we feel like you guys get it coming and going and we want to make sure we are supportive cyndi [Norton AntiSpam] Re: [low dose naltrexone] LDN and> >> testosterone use in RRMS> >>> >> Something occurred to me while reading this article. They only> >> needed 10> >> people for this study. It must not have been too> expensive. Why> >> can't we> >> support a smaller study like this for LDN and have some kind of> >> reporting> >> outcome from it?> >>> >>> >>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 $10 plus postage is a pittance, in my opinion. You shouldn't feel guilty about asking for such a small contribution when recovering apparently only a small part of your expenditure, and not profit, is the goal. I'll buy a copy when it's ready. Cyndi Lenz wrote: > Althea > I'm doing this anyway-- I have no expectation except to finish it and > make it available and then finish my documentary (of which I have no > patient volunteers at this time--cough cough) (I should have a video > contest) and put it out there-- > i just feel guilty for charging for it because i know many you guys > are on disability and don't have much money. ---so I'm trying to > figure what is fair and also let Dr Skip know because he feels the > same way I do. I think if we could afford it he would just give you LDN. > I'm working on this other dvd (its a nightmare) for a community animal > blood bank- they asked me to do somethng very simple and it turned out > to be the video from hell- they asked me to create a video so they > could show people how to infuse and deal with this dog blood. They aea > non-profit animal blood bank so i talked skip into sponsoring the > production. adam and I put hours-about 300 hours so far and we are > almost done- but these people think they are going to sell it and I > keep on telling them forget it -no one will buy so you need to find > someone to pay to distribute it - so we were at this vet meeting in > baltimore last year and we went to the people who make all the stuff > you need to do this and they were all happy to write checks. > this is the way it works in -you know- the medicalwork-you get grants > from drug companies. > but then I know for sure I would asked to compromise my information > and I won't do that. so it needs to be people -powered. andin the end > thats the best way . > cyndi > > > > -- Original Message ----- > > From: Aletha Wittmann <mailto:Aletha@...> > low dose naltrexone > <mailto:low dose naltrexone > > Sent: Wednesday, May 03, 2006 3:34 PM > Subject: [Norton AntiSpam] Re: [low dose naltrexone] studies & the dvd > > No offence to this wonderful group, but the group as a whole has > had a > history of saying yes they would contribute, or purchase a book if > it is > written, or donate a certain amount to a funding project for LDN > if it is up > and going etc, and then not going through with it. This has > happened on > several occasions. It is understandable that many from this group > do not > have much money etc., but it is best to be honest up front as > people have > invested money and time and not had the break-even that they had > hoped for. > > Hope I don't sound negative, but I don't want anyone to lose money > or time > if there is not a genuine expected outcome. > > My best > Aletha > > [Norton AntiSpam] Re: [low dose naltrexone] LDN and > >> testosterone use in RRMS > >> > >> Something occurred to me while reading this article. They only > >> needed 10 > >> people for this study. It must not have been too > expensive. Why > >> can't we > >> support a smaller study like this for LDN and have some kind of > >> reporting > >> outcome from it? > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hi Cyndi, Cough - Cough!!!! I volunteered for the Documentary - Remember?????????? Always A Friend, Crystal Cyndi Lenz <psychrn@...> wrote: Althea I'm doing this anyway-- I have no expectation except to finish it and make it available and then finish my documentary (of which I have no patient volunteers at this time--cough cough) (I should have a video contest) and put it out there-- i just feel guilty for charging for it because i know many you guys are on disability and don't have much money. ---so I'm trying to figure what is fair and also let Dr Skip know because he feels the same way I do. I think if we could afford it he would just give you LDN. I'm working on this other dvd (its a nightmare) for a community animal blood bank- they asked me to do somethng very simple and it turned out to be the video from hell- they asked me to create a video so they could show people how to infuse and deal with this dog blood. They aea non-profit animal blood bank so i talked skip into sponsoring the production. adam and I put hours-about 300 hours so far and we are almost done- but these people think they are going to sell it and I keep on telling them forget it -no one will buy so you need to find someone to pay to distribute it - so we were at this vet meeting in baltimore last year and we went to the people who make all the stuff you need to do this and they were all happy to write checks. this is the way it works in -you know- the medicalwork-you get grants from drug companies. but then I know for sure I would asked to compromise my information and I won't do that. so it needs to be people -powered. andin the end thats the best way . cyndi -- Original Message ----- From: Aletha Wittmann low dose naltrexone Sent: Wednesday, May 03, 2006 3:34 PM Subject: [Norton AntiSpam] Re: [low dose naltrexone] studies & the dvd No offence to this wonderful group, but the group as a whole has had a history of saying yes they would contribute, or purchase a book if it is written, or donate a certain amount to a funding project for LDN if it is up and going etc, and then not going through with it. This has happened on several occasions. It is understandable that many from this group do not have much money etc., but it is best to be honest up front as people have invested money and time and not had the break-even that they had hoped for.Hope I don't sound negative, but I don't want anyone to lose money or time if there is not a genuine expected outcome.My bestAletha [Norton AntiSpam] Re: [low dose naltrexone] LDN and>> testosterone use in RRMS>>>> Something occurred to me while reading this article. They only>> needed 10>> people for this study. It must not have been too expensive. Why>> can't we>> support a smaller study like this for LDN and have some kind of>> reporting>> outcome from it?>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 yes you didOn May 3, 2006, at 7:55 PM, Crystal wrote:Hi Cyndi, Cough - Cough!!!! I volunteered for the Documentary - Remember?????????? Always A Friend,CrystalCyndi Lenz <psychrn@...> wrote:AltheaI'm doing this anyway-- I have no expectation except to finish it and make it available and then finish my documentary (of which I have no patient volunteers at this time--cough cough) (I should have a video contest) and put it out there--i just feel guilty for charging for it because i know many you guys are on disability and don't have much money. ---so I'm trying to figure what is fair and also let Dr Skip know because he feels the same way I do. I think if we could afford it he would just give you LDN.I'm working on this other dvd (its a nightmare) for a community animal blood bank- they asked me to do somethng very simple and it turned out to be the video from hell- they asked me to create a video so they could show people how to infuse and deal with this dog blood. They aea non-profit animal blood bank so i talked skip into sponsoring the production. adam and I put hours-about 300 hours so far and we are almost done- but these people think they are going to sell it and I keep on telling them forget it -no one will buy so you need to find someone to pay to distribute it - so we were at this vet meeting in baltimore last year and we went to the people who make all the stuff you need to do this and they were all happy to write checks.this is the way it works in -you know- the medicalwork-you get grants from drug companies.but then I know for sure I would asked to compromise my information and I won't do that. so it needs to be people -powered. andin the end thats the best way .cyndi -- Original Message -----From: Aletha Wittmannlow dose naltrexone Sent: Wednesday, May 03, 2006 3:34 PMSubject: [Norton AntiSpam] Re: [low dose naltrexone] studies & the dvdNo offence to this wonderful group, but the group as a whole has had a history of saying yes they would contribute, or purchase a book if it is written, or donate a certain amount to a funding project for LDN if it is up and going etc, and then not going through with it. This has happened on several occasions. It is understandable that many from this group do not have much money etc., but it is best to be honest up front as people have invested money and time and not had the break-even that they had hoped for.Hope I don't sound negative, but I don't want anyone to lose money or time if there is not a genuine expected outcome.My bestAletha [Norton AntiSpam] Re: [low dose naltrexone] LDN and>> testosterone use in RRMS>>>> Something occurred to me while reading this article. They only>> needed 10>> people for this study. It must not have been too expensive. Why>> can't we>> support a smaller study like this for LDN and have some kind of>> reporting>> outcome from it?>>>>>>>> Quote Link to comment Share on other sites More sharing options...
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