Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 brothers been on ldn for a little over 3 months what i see is he can move legs now his muscles not so tight his bed sore healing excepting well his badder is working better and his bowels are back to normal concentration improving more alert when awake is it the ldn or his vitamin regimine or both who knows just happy to see these changes >From: " Kathy Lintzenich " <mykittypaws@...> >Reply-low dose naltrexone ><low dose naltrexone > >Subject: Re: [low dose naltrexone] LDN >Date: Fri, 29 Sep 2006 19:57:31 -0700 > >It took 3 months for me to notice a difference. The reason it is probably >different for everyone is our immune systems are all functioning at >different levels. It takes some people longer to achieve a state of balance >than others. It may be your own starting point. It makes more sense than >anything else. Actually it could be something as intricate as whose pineal >gland has more calcification. All we can really have is an educated guess >at this point. Noone knows for sure all the physiological mechanisms >involved. We are just grateful it works for the majority. I think I can >speak safely for everyone here by saying that. Kathy > [low dose naltrexone] Off Topic Posts > > > > I'm with on this one--I come here to read about LDN. It >is easy enough to start your own group for any other purpose, and if >members here feel the need to socialize why not start your own group? Or >e-mail to each other privately. There are plenty of options. > > -do we have any idea how many on this Board are taking LDN >for RRMS, PPMS or SPMS? I just wondered if we had an idea whether there is >some group that gets more benefit than the others. > > I have SPMS, according to my doctor. My walking and balance are >not better, but some of the other newer sympoms have really subsided, >including what was a very annoying nystagmus. Has anyone else had an >imporovent with eye problems? > > Joyce > > > > > >---------------------------------------------------------------------- > Check out the new AOL. Most comprehensive set of free safety and >security tools, free access to millions of high-quality videos from across >the web, free AOL Mail and more. > > > > > > _________________________________________________________________ Express yourself - download free Windows Live Messenger themes! http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine\ -msn.com/themes/vibe/default.aspx?locale=en-us & source=hmtagline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 There are some very interesting discussions going on about steriods and LDN amongst a number of clinicans. I know that some hard-liners say that its a no-no. My impression is that if you are having an exacerbation that the most effective way to reduce the long term effects is to have a course of steriods. Some folks thing that the long term effects of this is to reduce the effectiveness of LDN. Again this is an impression that some clinicans have, there is not data one way or the other. Again my impression is that an exacerbation can create more serious long term problems An alternative that I have heard about is to go to relatively high doses of naltrexone. This is counter-intuitive, but a couple of folks I have spoken with have taken 25 mgs for a couple of day and they claim their exacerbations have been ameleroated. Our next study is a longitudinal study. This will include several questions about steriod use. The initial analysis of our data base suggests that we will have "good" data as far back as 5 years. Since the NY conference ins 05 I have spoken to close to a dozen "groups" who want to do "real" clinical studies. This has ranged from several important academic institutions and governmental departments to some wacho's who would do more harm than good.. I make the same offer to them, the drug will be for free. Its really weird how no one has taken me up on the offer. One group did take a sample and had it assayed. The results were +/- 0.1% of label. So we know that it wasn't our compound. To date I have not seen any clinical studies on LDN and MS reported except the one's we have done. Even the "mystery" guest at NIH doesn't seem interested anymore. Let's all say a prayer that Jill s work will actually be the catalyst to get this thing going. Dr.Skip Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 I don't think its a matter of not working -i think its a matter of how much of your body do you have to get back into order. How screwed up were the rest of your functions. Lets just take the endocrine system. If your endocrine system is messed up because you've been on steroids or whatever it can take six months to put it back together again. this is just one example of a pile I could put here. Menopause (I don't know what they don't call it Womanpause - maybe because we drive our men folk insane during this time) will screw up all the works so its harder to get yourself back in order. Stress. big time. Dr Crowly discussed this with Skip and I when he was here -because he asks himself the same question all the time.He said if someone was on steroids it would take them months to feel the affects of ldn. This makes so much sense to me. Thyroid Adrenals Thymus The sex organs -if anything there is out of whack not only is it going to affect you but its to take longer to get yourself back on track. cyndi On Sep 30, 2006, at 2:07 AM, nancy millar wrote: > brothers been on ldn for a little over 3 months what i see is he > can move > legs now his muscles not so tight his bed sore healing excepting > well > his badder is working better and his bowels are back to normal > concentration improving more alert when awake is it the ldn or > his vitamin > regimine or both who knows just happy to see these changes > > >> From: " Kathy Lintzenich " <mykittypaws@...> >> Reply-low dose naltrexone >> <low dose naltrexone > >> Subject: Re: [low dose naltrexone] LDN >> Date: Fri, 29 Sep 2006 19:57:31 -0700 >> >> It took 3 months for me to notice a difference. The reason it is >> probably >> different for everyone is our immune systems are all functioning at >> different levels. It takes some people longer to achieve a state >> of balance >> than others. It may be your own starting point. It makes more >> sense than >> anything else. Actually it could be something as intricate as >> whose pineal >> gland has more calcification. All we can really have is an >> educated guess >> at this point. Noone knows for sure all the physiological mechanisms >> involved. We are just grateful it works for the majority. I think >> I can >> speak safely for everyone here by saying that. Kathy >> [low dose naltrexone] Off Topic Posts >> >> >> >> I'm with on this one--I come here to read about >> LDN. It >> is easy enough to start your own group for any other >> purpose, and if >> members here feel the need to socialize why not start your own >> group? Or >> e-mail to each other privately. There are plenty of options. >> >> -do we have any idea how many on this Board are >> taking LDN >> for RRMS, PPMS or SPMS? I just wondered if we had an idea whether >> there is >> some group that gets more benefit than the others. >> >> I have SPMS, according to my doctor. My walking and >> balance are >> not better, but some of the other newer sympoms have really subsided, >> including what was a very annoying nystagmus. Has anyone else had an >> imporovent with eye problems? >> >> Joyce >> >> >> >> >> >> --------------------------------------------------------------------- >> - >> Check out the new AOL. Most comprehensive set of free >> safety and >> security tools, free access to millions of high-quality videos >> from across >> the web, free AOL Mail and more. >> >> >> >> >> >> > > _________________________________________________________________ > Express yourself - download free Windows Live Messenger themes! > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/? > href=http://imagine-msn.com/themes/vibe/default.aspx?locale=en- > us & source=hmtagline > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Ok Cyndi, so I have a question. My son had the high dose steroid in Aug, and started LDN a few weeks ago. Do you or Skip think that he will have the same benefit of the disease progression being halted and perhaps some correction of the lesions in his brain that he would have had with the LDN if he had not taken the steroid. In other words is the steroid letting the ldn do its work? Thanks, Conni Re: [low dose naltrexone] LDN >> Date: Fri, 29 Sep 2006 19:57:31 -0700 >> >> It took 3 months for me to notice a difference. The reason it is >> probably >> different for everyone is our immune systems are all functioning at >> different levels. It takes some people longer to achieve a state >> of balance >> than others. It may be your own starting point. It makes more >> sense than >> anything else. Actually it could be something as intricate as >> whose pineal >> gland has more calcification. All we can really have is an >> educated guess >> at this point. Noone knows for sure all the physiological mechanisms >> involved. We are just grateful it works for the majority. I think >> I can >> speak safely for everyone here by saying that. Kathy >> [low dose naltrexone] Off Topic Posts >> >> >> >> I'm with on this one--I come here to read about >> LDN. It >> is easy enough to start your own group for any other >> purpose, and if >> members here feel the need to socialize why not start your own >> group? Or >> e-mail to each other privately. There are plenty of options. >> >> -do we have any idea how many on this Board are >> taking LDN >> for RRMS, PPMS or SPMS? I just wondered if we had an idea whether >> there is >> some group that gets more benefit than the others. >> >> I have SPMS, according to my doctor. My walking and >> balance are >> not better, but some of the other newer sympoms have really subsided, >> including what was a very annoying nystagmus. Has anyone else had an >> imporovent with eye problems? >> >> Joyce >> >> >> >> >> >> --------------------------------------------------------------------- >> - >> Check out the new AOL. Most comprehensive set of free >> safety and >> security tools, free access to millions of high-quality videos >> from across >> the web, free AOL Mail and more. >> >> >> >> >> >> > > _________________________________________________________________ > Express yourself - download free Windows Live Messenger themes! > http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/? > href=http://imagine-msn.com/themes/vibe/default.aspx?locale=en- > us & source=hmtagline > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Great info Dr Skip. Care to comment on Dr Zagons research. I realize we may not hear anything til next year, want to speculate how things are going? Re: [low dose naltrexone] LDN/update 3 months There are some very interesting discussions going on about steriods and LDN amongst a number of clinicans. I know that some hard-liners say that its a no-no. My impression is that if you are having an exacerbation that the most effective way to reduce the long term effects is to have a course of steriods. Some folks thing that the long term effects of this is to reduce the effectiveness of LDN. Again this is an impression that some clinicans have, there is not data one way or the other. Again my impression is that an exacerbation can create more serious long term problems An alternative that I have heard about is to go to relatively high doses of naltrexone. This is counter-intuitive, but a couple of folks I have spoken with have taken 25 mgs for a couple of day and they claim their exacerbations have been ameleroated. Our next study is a longitudinal study. This will include several questions about steriod use. The initial analysis of our data base suggests that we will have "good" data as far back as 5 years. Since the NY conference ins 05 I have spoken to close to a dozen "groups" who want to do "real" clinical studies. This has ranged from several important academic institutions and governmental departments to some wacho's who would do more harm than good.. I make the same offer to them, the drug will be for free. Its really weird how no one has taken me up on the offer. One group did take a sample and had it assayed. The results were +/- 0.1% of label. So we know that it wasn't our compound. To date I have not seen any clinical studies on LDN and MS reported except the one's we have done. Even the "mystery" guest at NIH doesn't seem interested anymore. Let's all say a prayer that Jill s work will actually be the catalyst to get this thing going. Dr.Skip Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 I have taken steroids once in my life, This was 8mg. of prednisone and tapered off. It cured my optic neuritis. This was the only steroid Dr,. Neiper recommended and at that dosage it does not harm you. We don't need these high doses of steroids. The body will generally do what it is designed to do if we gently coax it. I may sound crazy but everything Dr. Neiper ever said has worked for me and many others. I trust him more than any doctor I have ever been to and still mourn his loss. I am relaying this info as it is something to try which can do you no harm. Anyone reading this, call the library and get Dr,. Neiper's protocol for prednisone. You won't be sorry and your immune system will thank you.Kathy 608-647-6513 Library Re: [low dose naltrexone] LDN/update 3 months There are some very interesting discussions going on about steriods and LDN amongst a number of clinicans. I know that some hard-liners say that its a no-no. My impression is that if you are having an exacerbation that the most effective way to reduce the long term effects is to have a course of steriods. Some folks thing that the long term effects of this is to reduce the effectiveness of LDN. Again this is an impression that some clinicans have, there is not data one way or the other. Again my impression is that an exacerbation can create more serious long term problems An alternative that I have heard about is to go to relatively high doses of naltrexone. This is counter-intuitive, but a couple of folks I have spoken with have taken 25 mgs for a couple of day and they claim their exacerbations have been ameleroated. Our next study is a longitudinal study. This will include several questions about steriod use. The initial analysis of our data base suggests that we will have "good" data as far back as 5 years. Since the NY conference ins 05 I have spoken to close to a dozen "groups" who want to do "real" clinical studies. This has ranged from several important academic institutions and governmental departments to some wacho's who would do more harm than good.. I make the same offer to them, the drug will be for free. Its really weird how no one has taken me up on the offer. One group did take a sample and had it assayed. The results were +/- 0.1% of label. So we know that it wasn't our compound. To date I have not seen any clinical studies on LDN and MS reported except the one's we have done. Even the "mystery" guest at NIH doesn't seem interested anymore. Let's all say a prayer that Jill s work will actually be the catalyst to get this thing going. Dr.Skip Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Sandi, Anything that BOOSTS the immune system would seem to go right along with LDN. A low cortisol level is a sign of a weak immune system. > My doc at the Fibro and Fatigue Center wants me to take a very low dose of cortisol to boost my immune system as well as take the LDN. He prescribed Cortef 5 mg. taken twice a day. He says my levels are low and need to be raised. Would this counteract the benefits of LDN or is it in such a low dose that it wouldn't matter? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Hi Kathy, No he didn't. I just had the regular levels tested by Quest Labs. Do you know the name of the lab that does the saliva test? Sandi How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Smoky Mountain Labs and also Larry the compounder can order the saliva test for you. His number is 630-859-0333. He is very knowledgeable about hormones and their effect on ms. I highly recommend at least speaking with him. There is no charge of course and he is great to speak with. Write me if you have any questions, Kathy Re: [low dose naltrexone] LDN/update 3 months Hi Kathy, No he didn't. I just had the regular levels tested by Quest Labs. Do you know the name of the lab that does the saliva test? Sandi How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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