Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Well, I have been experimenting on myself to find " MY " correct dosage and best compounding of LDN. I started LDN in mid-April and, with Skip's help, discovered that the reason I was getting severe stomach pains from the 3.0 capsules compounded at Irmat, was that I could not tolerate the avicil for some reason---maybe I was allergic to it? So I had a new batch of 3.0 compounded for me with lactose. I did have some real improvement with the LDN (not with walking however) so I decided at the end of May to try 4.5. Big Mistake! The numbness in my feet spread halfway up my calves and my walking got worse. So after about 4 days I went back to 3.0, the numbness retreated to the toe-to-arch area of my feet and I felt much better after a few days. Then, never satisfied with the status quo, last week I asked my doctor to give me a prescription for 3.5. He thought I was flaky not to leave well enough alone, but he called in the prescription for me and Irmat filled a 3.5 with lactose filler. After the first night, I felt very good the next day. But....in the past 2 days I have been having more problems with balance and walking, so last night I went back to 3.0. Now, I don't know if it is the extreme heat we are having here in NY or if 3.0 is " MY " correct dosage and not 3.5; but I'll see after a few days if 3.0 gets me comfortable again. My conclusion is that a little bit of LDN goes a long way; that finding the correct dosage and filler are critical to success with this drug; and that because we are pretty much on our own in figuring out what the right filler and the correct dosage are, communication with other LDN users is really important. Thanks to all those who have been helping me. I'll be back with more details because I think it is very important for us to share experiences on this basic issue. Joyce > Just an update on my progress. I've been on LDN for about two months. (3.0 and 4.5) haven't really settled on a dosage that's right for me yet. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 > > Well, I have been experimenting on myself to find " MY " correct dosage > and best compounding of LDN. > > I started LDN in mid-April and, with Skip's help, discovered that the > reason I was getting severe stomach pains from the 3.0 capsules > compounded at Irmat, was that I could not tolerate the avicil for some > reason---maybe I was allergic to it? So I had a new batch of 3.0 > compounded for me with lactose. I did have some real improvement with > the LDN (not with walking however) so I decided at the end of May to > try 4.5. > > Big Mistake! The numbness in my feet spread halfway up my calves and my > walking got worse. So after about 4 days I went back to 3.0, the > numbness retreated to the toe-to-arch area of my feet and I felt much > better after a few days. > > Then, never satisfied with the status quo, last week I asked my doctor > to give me a prescription for 3.5. He thought I was flaky not to leave > well enough alone, but he called in the prescription for me and Irmat > filled a 3.5 with lactose filler. After the first night, I felt very > good the next day. But....in the past 2 days I have been having more > problems with balance and walking, so last night I went back to 3.0. > > Now, I don't know if it is the extreme heat we are having here in NY or > if 3.0 is " MY " correct dosage and not 3.5; but I'll see after a few > days if 3.0 gets me comfortable again. > > My conclusion is that a little bit of LDN goes a long way; that finding > the correct dosage and filler are critical to success with this drug; > and that because we are pretty much on our own in figuring out what the > right filler and the correct dosage are, communication with other LDN > users is really important. > > Thanks to all those who have been helping me. I'll be back with more > details because I think it is very important for us to share > experiences on this basic issue. > > Joyce ========= See if these increased symptoms stay with you on the higher dose for more than 14 days. Many times these symptoms will subside, if they don't then back down to 3.0mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 I hope it's not a 'trade-off' I do better with 3.0 as well, thats the dose I have been using. Better mobility, I feel a little better in the morning. 4.5 is recommended as the best dose to slow or stop progression, I wonder if there is any kind of trade-off between feeling better with the lower dose as opposed to halting future progression?>> Well, I have been experimenting on myself to find "MY" correct dosage > and best compounding of LDN. > > I started LDN in mid-April and, with Skip's help, discovered that the > reason I was getting severe stomach pains from the 3.0 capsules > compounded at Irmat, was that I could not tolerate the avicil for some > reason---maybe I was allergic to it? So I had a new batch of 3.0 > compounded for me with lactose. I did have some real improvement with > the LDN (not with walking however) so I decided at the end of May to > try 4.5. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Can someone explain this email? I am trying to convince my son and the neurologist to try this for my 20 year old son, who is just diagnosed with MS in the fall, and now has his second eye problem. He is lactose intolerant, so I am wondering about this person’s upset stomach. How do you get the formulation to 3, 3.5 or 4.5 after the doctor prescribes the 4.5? [low dose naltrexone] Re: Which Dosage is Right? Or Back to 3.0 I hope it's not a 'trade-off' I do better with 3.0 as well, thats the dose I have been using. Better mobility, I feel a little better in the morning. 4.5 is recommended as the best dose to slow or stop progression, I wonder if there is any kind of trade-off between feeling better with the lower dose as opposed to halting future progression? > > Well, I have been experimenting on myself to find " MY " correct dosage > and best compounding of LDN. > > I started LDN in mid-April and, with Skip's help, discovered that the > reason I was getting severe stomach pains from the 3.0 capsules > compounded at Irmat, was that I could not tolerate the avicil for some > reason---maybe I was allergic to it? So I had a new batch of 3.0 > compounded for me with lactose. I did have some real improvement with > the LDN (not with walking however) so I decided at the end of May to > try 4.5. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 i think no I know for the most part that the advicil works great -you were the only person we came across that was having problems. I even discussed it with the doctor that originally turned us on to that ( I brought an LDN DVD)-his thing is environmental sensitivities so all his patients are allergic to everything. and he was amazed. having said that I say what works is good stuff. as far as the dose goes 1. you guys with ms do not tolerate heat well. i would not put an credence in to anything if your outside in this stuff. This is wicked if you don't have ms. 2. i don't you are on your I just think we've gotten to this point right now that we know LDN does work and we need to figure this out. did you start with the original 1.5 and work your way because this method although leaves you all impatient and asking for more seems to work better. (except for my friend Peg here) 3. I'm going to skip about this later because I think its important what haunts me is when Dr Crowly said he thinks that some of side effects are not really side effects but awakenings of nerves in your body and that he feels that if people can stick it out then it will go away. and I recommending that. no not at this time but i think it warrants some conversation. make sure you guys stay really hydrated. cyndi On Jul 31, 2006, at 12:57 PM, dollsesq wrote: > Well, I have been experimenting on myself to find " MY " correct dosage > and best compounding of LDN. > > I started LDN in mid-April and, with Skip's help, discovered that the > reason I was getting severe stomach pains from the 3.0 capsules > compounded at Irmat, was that I could not tolerate the avicil for some > reason---maybe I was allergic to it? So I had a new batch of 3.0 > compounded for me with lactose. I did have some real improvement with > the LDN (not with walking however) so I decided at the end of May to > try 4.5. > > Big Mistake! The numbness in my feet spread halfway up my calves > and my > walking got worse. So after about 4 days I went back to 3.0, the > numbness retreated to the toe-to-arch area of my feet and I felt much > better after a few days. > > Then, never satisfied with the status quo, last week I asked my doctor > to give me a prescription for 3.5. He thought I was flaky not to > leave > well enough alone, but he called in the prescription for me and Irmat > filled a 3.5 with lactose filler. After the first night, I felt very > good the next day. But....in the past 2 days I have been having more > problems with balance and walking, so last night I went back to 3.0. > > Now, I don't know if it is the extreme heat we are having here in > NY or > if 3.0 is " MY " correct dosage and not 3.5; but I'll see after a few > days if 3.0 gets me comfortable again. > > My conclusion is that a little bit of LDN goes a long way; that > finding > the correct dosage and filler are critical to success with this drug; > and that because we are pretty much on our own in figuring out what > the > right filler and the correct dosage are, communication with other LDN > users is really important. > > Thanks to all those who have been helping me. I'll be back with more > details because I think it is very important for us to share > experiences on this basic issue. > > Joyce > > > > > > >> Just an update on my progress. I've been on LDN for about two > months. (3.0 and 4.5) haven't really settled on a dosage that's > right for me yet. >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 lactose should be your last choice. is your son getting ldn now ? you should ask your doctor to call your compounding pharmacist and discuss how this should be done. we've been starting people off at 1.5 and then working them up thru 3 and then 4.5.we are seeing less issues more success. so find a pharmacy you like and hook your doc and the pharmacist up togethercyndiOn Jul 31, 2006, at 4:22 PM, Conni Lawrence wrote:Can someone explain this email? I am trying to convince my son and the neurologist to try this for my 20 year old son, who is just diagnosed with MS in the fall, and now has his second eye problem. He is lactose intolerant, so I am wondering about this person’s upset stomach. How do you get the formulation to 3, 3.5 or 4.5 after the doctor prescribes the 4.5?   -----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of frito_banned_itoSent: Monday, July 31, 2006 12:12 PMlow dose naltrexone Subject: [low dose naltrexone] Re: Which Dosage is Right? Or Back to 3.0 I hope it's not a 'trade-off'I do better with 3.0 as well, thats the dose I have been using. Better mobility, I feel a little better in the morning. 4.5 is recommended as the best dose to slow or stop progression, I wonder if there is any kind of trade-off between feeling better with the lower dose as opposed to halting future progression? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 I started with 1.5 for two weeks, went to 3.0 for two weeks and then to 4.5 and have stayed on 4.5. I found that amount to be what I get good results from. Before I hit 4.5 I had NO results - good, bad or indifferent. At 4.5 I had an immediate change (improvement) in how I felt and I got side-effects (VERY vivid dreams) for the first time. I have stayed at 4.5 since. In my research (Sorry I can't tell you where I found this - my other computer is sitting gutted on a workbench with little hope of retrieving anything off the hard drive and I was too stupid to think that I needed to back-up much of what was on it and of course every bit of my LDN research was on it!) I remember someone (Dr. Bihari?) stating that different people found results at different doses. I also recall seeing somewhere (again I think Dr. Bihari's site) that they had found that there seemed to be that the effective level for men was 3.0 and for women was 4.5 but that this was by no means a rule - it just seemed to be the pattern that had been seen up to that point. I haven't seen anything that seems to state directly that the disease is stopped or that exacerbations are stopped only if you take 4.5 mg. but then I probably haven't read a great deal of what is out there more recently. (The last time I did a good " read " on LDN was about 7-8 months ago. I am trying to catch up and do another one now.) I would LOVE it if someone could point me in the right direction to find where they speak of the LDN being the most effective at 4.5. If (when) I find where I read the discussion about 3.0 for men and 4.5 for women I will post it unless someone (with a better computer than mine!) posts the info first. Thanks! - Meg > > > I hope it's not a 'trade-off' > > I do better with 3.0 as well, thats the dose I have been using. Better > mobility, I feel a little better in the morning. 4.5 is recommended as > the best dose to slow or stop progression, I wonder if there is any kind > of trade-off between feeling better with the lower dose as opposed to > halting future progression? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hello....This is my first post....Been on LDN for over a year now. People who saw me before when I was on Avonex and a handful of other pills that did NOTHING for me but made me look through a veil of medication! I feel so alive with the LDN. I think we all need to pray for the poor person who thinks she would be better off on Copaxone. I personally think they are NUTS! > > > > Well, I have been experimenting on myself to find " MY " correct > dosage > > and best compounding of LDN. > > > > I started LDN in mid-April and, with Skip's help, discovered that > the > > reason I was getting severe stomach pains from the 3.0 capsules > > compounded at Irmat, was that I could not tolerate the avicil for > some > > reason---maybe I was allergic to it? So I had a new batch of 3.0 > > compounded for me with lactose. I did have some real improvement > with > > the LDN (not with walking however) so I decided at the end of May > to > > try 4.5. > > > > Big Mistake! The numbness in my feet spread halfway up my calves > and my > > walking got worse. So after about 4 days I went back to 3.0, the > > numbness retreated to the toe-to-arch area of my feet and I felt > much > > better after a few days. > > > > Then, never satisfied with the status quo, last week I asked my > doctor > > to give me a prescription for 3.5. He thought I was flaky not to > leave > > well enough alone, but he called in the prescription for me and > Irmat > > filled a 3.5 with lactose filler. After the first night, I felt > very > > good the next day. But....in the past 2 days I have been having > more > > problems with balance and walking, so last night I went back to > 3.0. > > > > Now, I don't know if it is the extreme heat we are having here in > NY or > > if 3.0 is " MY " correct dosage and not 3.5; but I'll see after a > few > > days if 3.0 gets me comfortable again. > > > > My conclusion is that a little bit of LDN goes a long way; that > finding > > the correct dosage and filler are critical to success with this > drug; > > and that because we are pretty much on our own in figuring out > what the > > right filler and the correct dosage are, communication with other > LDN > > users is really important. > > > > Thanks to all those who have been helping me. I'll be back with > more > > details because I think it is very important for us to share > > experiences on this basic issue. > > > > Joyce > ========= > > See if these increased symptoms stay with you on the higher dose for > more than 14 days. Many times these symptoms will subside, if they > don't then back down to 3.0mg. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 > > I started with 1.5 for two weeks, went to 3.0 for two weeks and then > to 4.5 and have stayed on 4.5. I found that amount to be what I get > good results from. Before I hit 4.5 I had NO results - good, bad or > indifferent. At 4.5 I had an immediate change (improvement) in how I > felt and I got side-effects (VERY vivid dreams) for the first time. > I have stayed at 4.5 since. > > In my research (Sorry I can't tell you where I found this - my other > computer is sitting gutted on a workbench with little hope of > retrieving anything off the hard drive and I was too stupid to think > that I needed to back-up much of what was on it and of course every > bit of my LDN research was on it!) I remember someone (Dr. Bihari?) > stating that different people found results at different doses. I > also recall seeing somewhere (again I think Dr. Bihari's site) that > they had found that there seemed to be that the effective level for > men was 3.0 and for women was 4.5 but that this was by no means a > rule - it just seemed to be the pattern that had been seen up to > that point. I haven't seen anything that seems to state > directly that the disease is stopped or that exacerbations are > stopped only if you take 4.5 mg. but then I probably haven't read a > great deal of what is out there more recently. (The last time I did > a good " read " on LDN was about 7-8 months ago. I am trying to catch > up and do another one now.) > > I would LOVE it if someone could point me in the right direction to > find where they speak of the LDN being the most effective at 4.5. If > (when) I find where I read the discussion about 3.0 for men and 4.5 > for women I will post it unless someone (with a better computer than > mine!) posts the info first. > Thanks! - Meg > -- Regarding men taking 3.0 or 4.5mg of LDN an informal poll was conducted on this discussion board a few months ago and the results were: Total Men Responding: 18 8 men (39% of the men) take 3.0mg 10 men (61% of the men) take 4.5mg Conclusion – more men take 4.5 than take 3.0. http://www.gazorpa.com/HWGDPoll.html For the record I've been taking 4.5mg since April 2005 and I'm male. Artie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 I guess the only question I have is what determines the 'right' amount. Is the right amount based off of how you react to it? If it IS, then is 3.0 going to have the same effects as 4.5? Why is there more than 1 'ok' amount to take? If 3.0 is just as good as 4.5, then why not just stick with 3.0? Is 3.0 not as good as 4.5, but it's better than, say, 1.5? Drugs affect people differently in different amounts, but I would like to get the full benefit out of LDN, does this mean that I should just try to ride out the 4.5, because it will be better in the long term, or will 3.0 have the same long term effect? It's never really been the question of 'when' to take it for me, it's always been 'how much'. This has always confused me.>> I started with 3.0 for 300 days, did 4.5 for 38 days and after 14 was ready to go back to 3.0, but I stuck it out; then a few months later I did 12 days of 4.5 before dropping back to 3.0> > Been at 3.0 ever since, 3 1/4 years now. The best medical years of my life and counting!> > Given my first 11 days ( journaled at http://www.larrygc.com/mystory on my ezboard ), I am so glad I didn't start at 1.5 (it was UNHEARD of at that point)> > The idea of 1.5 came about solely for doing 3.0 or 4.5 (2 for 3.0, 3 for 4.5) in order to Trial 4.5 after doing NO LESS than 3.0 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Good question. I don't know how long "riding it out" is.. I did 4.5 for 38 days and I saw the difference(s). I tried it again a few months later and by Day 12 I went back to 3.0 and said forget 4.5; 3.0 is the one for me. I definitely think I'm doing better on 3.0, so why take 4.5 ? I never tried/risked taking 1.5 ... never even considered it. [low dose naltrexone] Re: Which Dosage is Right? Or Back to 3.0 I guess the only question I have is what determines the 'right' amount. Is the right amount based off of how you react to it? If it IS, then is 3.0 going to have the same effects as 4.5? Why is there more than 1 'ok' amount to take? If 3.0 is just as good as 4.5, then why not just stick with 3.0? Is 3.0 not as good as 4.5, but it's better than, say, 1.5? Drugs affect people differently in different amounts, but I would like to get the full benefit out of LDN, does this mean that I should just try to ride out the 4.5, because it will be better in the long term, or will 3.0 have the same long term effect? It's never really been the question of 'when' to take it for me, it's always been 'how much'. This has always confused me.>> I started with 3.0 for 300 days, did 4.5 for 38 days and after 14 was ready to go back to 3.0, but I stuck it out; then a few months later I did 12 days of 4.5 before dropping back to 3.0> > Been at 3.0 ever since, 3 1/4 years now. The best medical years of my life and counting!> > Given my first 11 days ( journaled at http://www.larrygc.com/mystory on my ezboard ), I am so glad I didn't start at 1.5 (it was UNHEARD of at that point)> > The idea of 1.5 came about solely for doing 3.0 or 4.5 (2 for 3.0, 3 for 4.5) in order to Trial 4.5 after doing NO LESS than 3.0 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 yep, me too. I like how I feel with 3.0. I just hope I'm not robbing to pay , being better long -term benefits, being the way I currently feel!> >> > I started with 3.0 for 300 days, did 4.5 for 38 days and after 14 was ready to go back to 3.0, but I stuck it out; then a few months later I did 12 days of 4.5 before dropping back to 3.0> > > > Been at 3.0 ever since, 3 1/4 years now. The best medical years of my life and counting!> > > > Given my first 11 days ( journaled at http://www.larrygc.com/mystory on my ezboard ), I am so glad I didn't start at 1.5 (it was UNHEARD of at that point)> > > > The idea of 1.5 came about solely for doing 3.0 or 4.5 (2 for 3.0, 3 for 4.5) in order to Trial 4.5 after doing NO LESS than 3.0> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.