Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie, In the past few weeks I have also wondered if the LDN I am taking is doing anything for me at all, I have seemed to experience a few setbacks, seemingly new problems. Is it the LDN not working, or is it something else. These questions are what I constantly ask myself. I've come to the conclusion that the LDN IS working, since it is helping so many others, and I have to believe that I could be worse. I continue to take it, and I am getting stronger. LDN slows progression, it's not supposed to fix anything, although for many it DOES. I've also come to believe that LDN is just good for your body, I know those who use it who arent even diseased. Please reconsider stopping it, I would doubt that it is hurting you, and what if it is helping you? Stay with it!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie, best of luck in your effort to find stability. It's so hard to even guess what is going on with our bodies. Despite all the clues they give us we remain confused. I really think we should receive an owner's manual in the delivery room... I know it's frustrating but I hope you can keep your spirits up; I'm sure a positive attitude helps even though it is so hard to maintain at times. And how did you know I had more than one chin to keep up? With my chins pointed high, ----- Original Message ----- From: <angief1@...> <low dose naltrexone > Sent: Sunday, March 07, 2004 6:08 PM Subject: [low dose naltrexone] Tough decisions > Hi Group > > I thank everybody for the information and advice I have received this > past week. I have had to make some tough choices with regards to > LDN. I am a single mom, so getting to point of not being able to > work is not an option I have. The burning in my leg since starting > LDN has not changed, in fact it is now spreading to my arm and my > other leg and I am loosing strength in my leg as well now. I am not > sure what is going on as there are alot of variables going on right > now. So in order to give LDN a fair shot I have decided to stop it > for now, get over whatever is going on, get off all med's, be med > free for a month and give it another shot. I am too many meds right > now so no way of knowing what is doing what to my body at this point. > I have been on LDN for almost 3 weeks and just seem to be > progressivly getting worse, never been this bad in the 7 years since > I have been diagnosed and frankly it is scary. I will continue to > read posts and gather information as I am serious about giving LDN > another shot in the near future. It's the stubborn side of me coming > out. :-) > > Keep your chins up and a smile on your face. > > Angie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie, In all fairness to LDN, it's going to be difficult to pinpoint anything under any circumstances. That's the "B" about MS! Nearly 5 years ago I knew that I didn't feel quite right. I was stumbling occassionally and having occassional spasms. (I now look back and realize that the incredible need to stretch, as good as it felt, was a sign of things to come) I was on Avonex and a few supplements. By Sept '99 I had need for a cane. By Oct '99 a walker. Nov '99 this darned wheelchair! (That's when I gave up on Avonex - nothing else was even suggested by my nuero - except to take one day at a time!) It happened fast, and the burning pain and pins and needles have never let up since that time. I started LDN this past November, hoping for some improvement, but afraid to get my hopes too high. I've been fortunate because I have seen some improvement. What I'm saying is, if you can still walk, that's what you need to focus on. In my opinion, you may just have to deal with the pain, quite a few that I know are doing just that and can't walk to boot! If LDN could keep you up and on your feet, that would be worth the pain because you will have a hard time working in the chair. I know because I work one day a week. Police dispatcher in a small town. My co-workers are so good to me! They have put nearly everything down low enougfh that I can reach. If I can't reach a file that is up too high, my officer will help me out, but it is still hard work for me! (I used to be able to practically manage with my eyes closed and one hand tied behind my back!) It was hard to ask for help! I still say that I wish I had known about LDN sooner! Don't give up! This may be one of those things that would have happened anyway! Stick it out! Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 , Six weeks is not long enough! Hang in there! I didn't sleep for about 5 - 6 weeks after starting LDN, but am now! For the first time in 5 years I don't feel as if I am spiraling downward out of control! Just encouragement! Best of luck to you!! Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie, I do understand and appreciate what you are experiencing. Just know that what is happening to you can happen even if you are on nothing at all! That's MS! You just need to halt the progression, which may not mean you won't have symptoms, even new ones. I know how frustrating it is, and you will do ANYTHING to try to figure out what medical science hasn't even figured out (I personally don't believe that they want to). I've been there and done that, still am! Maybe someone will stumble onto the secret solution for all of us! Keep searching!! Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie and others, remember I was taking 3,75 mg. It still did not work ok and I felt so bad. I stopped LDN for 3 days, started up with the right vitamins and supplements again, started to take strong probiotic. Then I started LDN again at 2,5 mg. I'm ok now, I feel ok for 2 weeks now. Sometimes, every 5,6 days, I skip a LDN intake. I'll how long this goes well. Its the longest time since I started LDN that I feel ok. In my opinion, everyone is so different and will have to experiment what doseage and time works best for them. I still experience that food(allergies) play an important role in MS. And supplements are a must. I wish you much succes with whatever decision you make and too. Hold on, be strong. Chey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie, have you thought about reducing your dose for now or take it ever other night. In the past few weeks I have also wondered if the LDN I am taking > is doing anything for me at all, I have seemed to experience a few > setbacks, seemingly new problems. Is it the LDN not working, or is > it something else. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 For Angie and , are you takng any CRAB drugs with the LDN? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi I appreciate what you are saying, but everybody is missing what I am saying. I need a clean starting point in order to give LDN a fair trial here. Because as of now, my symptoms are the worse they have ever been in 7 years. Is it the ldn? Is it my body doing something funky? I tend to have a sensitivity to some drugs to the point that sometimes they actually work backwards, is this what is happening. I really don't know so instead of playing the guessing game I am trying to find a clean starting point. So once I am over whatever is going on this time and drug free of everything except my vitamins then I will give it another go. LDN works for most people, from what I have read and researched most remain stable or improve, not get progressively worse and worse which is what was happening with me, to the point I could hardly walk to the washroom yesterday. Please Please understand I am not giving up, but rather regrouping. I think it is wonderful that this is working for so many people, and am definitely not writing it off for myself, just trying to find a spot where I can give it a fair shot. Also by stopping and waiting till I am drug free and then starting it again, it will also tell me if it is the LDN that is bringing on these symptoms, because let's face it we are all individuals and not everything works the same on everybody. Once again I really do appreciate the support, just trying to give a clearer understanding of the reasons I am doing what I am doing. Angie > Angie, > > In all fairness to LDN, it's going to be difficult to pinpoint anything under > any circumstances. That's the " B " about MS! Nearly 5 years ago I knew that > I didn't feel quite right. I was stumbling occassionally and having > occassional spasms. (I now look back and realize that the incredible need to stretch, > as good as it felt, was a sign of things to come) I was on Avonex and a few > supplements. By Sept '99 I had need for a cane. By Oct '99 a walker. Nov '99 > this darned wheelchair! (That's when I gave up on Avonex - nothing else was > even suggested by my nuero - except to take one day at a time!) It happened > fast, and the burning pain and pins and needles have never let up since that > time. I started LDN this past November, hoping for some improvement, but afraid > to get my hopes too high. I've been fortunate because I have seen some > improvement. What I'm saying is, if you can still walk, that's what you need to > focus on. In my opinion, you may just have to deal with the pain, quite a few > that I know are doing just that and can't walk to boot! If LDN could keep you > up and on your feet, that would be worth the pain because you will have a hard > time working in the chair. I know because I work one day a week. Police > dispatcher in a small town. My co-workers are so good to me! They have put > nearly everything down low enougfh that I can reach. If I can't reach a file that > is up too high, my officer will help me out, but it is still hard work for > me! (I used to be able to practically manage with my eyes closed and one hand > tied behind my back!) It was hard to ask for help! I still say that I wish I > had known about LDN sooner! Don't give up! This may be one of those things > that would have happened anyway! Stick it out! > > Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Angie: what you are doing is akin to testing for allergies or how infants are put on new foods. You start with one thing at a time and see how you react. It's the only way to figure out what's causing your problems. Good luck. Edith > > Angie, > > > > In all fairness to LDN, it's going to be difficult to pinpoint > anything under > > any circumstances. That's the " B " about MS! Nearly 5 years ago I > knew that > > I didn't feel quite right. I was stumbling occassionally and > having > > occassional spasms. (I now look back and realize that the > incredible need to stretch, > > as good as it felt, was a sign of things to come) I was on Avonex > and a few > > supplements. By Sept '99 I had need for a cane. By Oct '99 a > walker. Nov '99 > > this darned wheelchair! (That's when I gave up on Avonex - nothing > else was > > even suggested by my nuero - except to take one day at a time!) It > happened > > fast, and the burning pain and pins and needles have never let up > since that > > time. I started LDN this past November, hoping for some > improvement, but afraid > > to get my hopes too high. I've been fortunate because I have seen > some > > improvement. What I'm saying is, if you can still walk, that's > what you need to > > focus on. In my opinion, you may just have to deal with the pain, > quite a few > > that I know are doing just that and can't walk to boot! If LDN > could keep you > > up and on your feet, that would be worth the pain because you will > have a hard > > time working in the chair. I know because I work one day a week. > Police > > dispatcher in a small town. My co-workers are so good to me! They > have put > > nearly everything down low enougfh that I can reach. If I can't > reach a file that > > is up too high, my officer will help me out, but it is still hard > work for > > me! (I used to be able to practically manage with my eyes closed > and one hand > > tied behind my back!) It was hard to ask for help! I still say > that I wish I > > had known about LDN sooner! Don't give up! This may be one of > those things > > that would have happened anyway! Stick it out! > > > > Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Naltrexone is cleared rapidly from the body - in just a few hours. If the problems persist more than a day after stopping I would strongly suspect something other than the naltrexone Larry J. Frieders,RPh |The Compounder575 W. Illinois Ave ~ Aurora, IL 60506 630-859-0333 FAX 630-859-0114 Sample newsletter http://www.theCompounder.com/NL-Sample.html Any health related information on our web pages or in our newsletters is for educational purposes only. None of the information we provide is to be construed as medical advice. Before applying any therapy or use of herbs, you may want to seek advice from your health care professional. Our information should not be a substitute for physician evaluation or treatment by a health care professional and is not intended to provide or confirm a diagnosis. ----- Original Message ----- From: angief1@... low dose naltrexone Sent: Monday, March 08, 2004 10:10 AM Subject: [low dose naltrexone] Re: Tough decisions HiI appreciate what you are saying, but everybody is missing what I am saying. I need a clean starting point in order to give LDN a fair trial here. Because as of now, my symptoms are the worse they have ever been in 7 years. Is it the ldn? Is it my body doing something funky? I tend to have a sensitivity to some drugs to the point that sometimes they actually work backwards, is this what is happening. I really don't know so instead of playing the guessing game I am trying to find a clean starting point. So once I am over whatever is going on this time and drug free of everything except my vitamins then I will give it another go. LDN works for most people, from what I have read and researched most remain stable or improve, not get progressively worse and worse which is what was happening with me, to the point I could hardly walk to the washroom yesterday. Please Please understand I am not giving up, but rather regrouping. I think it is wonderful that this is working for so many people, and am definitely not writing it off for myself, just trying to find a spot where I can give it a fair shot. Also by stopping and waiting till I am drug free and then starting it again, it will also tell me if it is the LDN that is bringing on these symptoms, because let's face it we are all individuals and not everything works the same on everybody.Once again I really do appreciate the support, just trying to give a clearer understanding of the reasons I am doing what I am doing. Angie> Angie,> > In all fairness to LDN, it's going to be difficult to pinpoint anything under > any circumstances. That's the "B" about MS! Nearly 5 years ago I knew that > I didn't feel quite right. I was stumbling occassionally and having > occassional spasms. (I now look back and realize that the incredible need to stretch, > as good as it felt, was a sign of things to come) I was on Avonex and a few > supplements. By Sept '99 I had need for a cane. By Oct '99 a walker. Nov '99 > this darned wheelchair! (That's when I gave up on Avonex - nothing else was > even suggested by my nuero - except to take one day at a time!) It happened > fast, and the burning pain and pins and needles have never let up since that > time. I started LDN this past November, hoping for some improvement, but afraid > to get my hopes too high. I've been fortunate because I have seen some > improvement. What I'm saying is, if you can still walk, that's what you need to > focus on. In my opinion, you may just have to deal with the pain, quite a few > that I know are doing just that and can't walk to boot! If LDN could keep you > up and on your feet, that would be worth the pain because you will have a hard > time working in the chair. I know because I work one day a week. Police > dispatcher in a small town. My co-workers are so good to me! They have put > nearly everything down low enougfh that I can reach. If I can't reach a file that > is up too high, my officer will help me out, but it is still hard work for > me! (I used to be able to practically manage with my eyes closed and one hand > tied behind my back!) It was hard to ask for help! I still say that I wish I > had known about LDN sooner! Don't give up! This may be one of those things > that would have happened anyway! Stick it out!> > Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Dear Angie, I hear what you are saying. I find that too many meds DOES confuse the issue. I had a wonderful start on LDN (after the 2 week initiation). Then I stopped Copaxone. I felt worse for a while, terrible headaches, etc. But weeks later I know that stopping the Copaxone allowed all my allergies to kick in. Now I am dealing with the allergies. Bottom line, Copaxone confused the issue. Meanwhile all the good stuff LDN has done for me, muscle strength, great sleep, etc.etc. remains. So DO WHAT YOU NEED TO DO, and then give LDN another chance. Wishing you the best. Lynda ----- Original Message ----- From: <angief1@...> <low dose naltrexone > Sent: Monday, March 08, 2004 11:10 AM Subject: [low dose naltrexone] Re: Tough decisions > Hi > > I appreciate what you are saying, but everybody is missing what I am > saying. I need a clean starting point in order to give LDN a fair > trial here. Because as of now, my symptoms are the worse they have > ever been in 7 years. Is it the ldn? Is it my body doing something > funky? I tend to have a sensitivity to some drugs to the point that > sometimes they actually work backwards, is this what is happening. I > really don't know so instead of playing the guessing game I am trying > to find a clean starting point. So once I am over whatever is going > on this time and drug free of everything except my vitamins then I > will give it another go. LDN works for most people, from what I have > read and researched most remain stable or improve, not get > progressively worse and worse which is what was happening with me, to > the point I could hardly walk to the washroom yesterday. Please > Please understand I am not giving up, but rather regrouping. I think > it is wonderful that this is working for so many people, and am > definitely not writing it off for myself, just trying to find a spot > where I can give it a fair shot. Also by stopping and waiting till I > am drug free and then starting it again, it will also tell me if it > is the LDN that is bringing on these symptoms, because let's face it > we are all individuals and not everything works the same on everybody. > > Once again I really do appreciate the support, just trying to give a > clearer understanding of the reasons I am doing what I am doing. > > Angie > > > > Angie, > > > > In all fairness to LDN, it's going to be difficult to pinpoint > anything under > > any circumstances. That's the " B " about MS! Nearly 5 years ago I > knew that > > I didn't feel quite right. I was stumbling occassionally and > having > > occassional spasms. (I now look back and realize that the > incredible need to stretch, > > as good as it felt, was a sign of things to come) I was on Avonex > and a few > > supplements. By Sept '99 I had need for a cane. By Oct '99 a > walker. Nov '99 > > this darned wheelchair! (That's when I gave up on Avonex - nothing > else was > > even suggested by my nuero - except to take one day at a time!) It > happened > > fast, and the burning pain and pins and needles have never let up > since that > > time. I started LDN this past November, hoping for some > improvement, but afraid > > to get my hopes too high. I've been fortunate because I have seen > some > > improvement. What I'm saying is, if you can still walk, that's > what you need to > > focus on. In my opinion, you may just have to deal with the pain, > quite a few > > that I know are doing just that and can't walk to boot! If LDN > could keep you > > up and on your feet, that would be worth the pain because you will > have a hard > > time working in the chair. I know because I work one day a week. > Police > > dispatcher in a small town. My co-workers are so good to me! They > have put > > nearly everything down low enougfh that I can reach. If I can't > reach a file that > > is up too high, my officer will help me out, but it is still hard > work for > > me! (I used to be able to practically manage with my eyes closed > and one hand > > tied behind my back!) It was hard to ask for help! I still say > that I wish I > > had known about LDN sooner! Don't give up! This may be one of > those things > > that would have happened anyway! Stick it out! > > > > Marcie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi Noclue I take only LDN and vitamins >From: noclue915@... >Reply-low dose naltrexone >low dose naltrexone >Subject: Re: [low dose naltrexone] Tough decisions >Date: Mon, 8 Mar 2004 12:38:09 EST > >For Angie and , are you takng any CRAB drugs with the LDN? MSN Search, le moteur de recherche qui pense comme vous ! Cliquez-ici Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi Helen Yes I kicked lowering the dose around, but then thought that I need a clean starting point, which is where I am headed now. Thanks a bunch for the thought. :-) Angie > Angie, have you thought about reducing your dose for now or take it ever > other night. > In the past few weeks I have also wondered if the LDN I am taking > > is doing anything for me at all, I have seemed to experience a few > > setbacks, seemingly new problems. Is it the LDN not working, or is > > it something else. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 , I had terrible side effects for 4 weeks. Just to let you know. Angie, I hear ya. thats why I stopped LDN 3 nights and lowered the dose. And thats why I skip a night now and then. But like said before it could just as well be the MS itself, try to stop a few nights and start over at low dose like 1,5mg or so. Uhm, I'm repeating whats already been said, sorry. Chey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 No I am not, stopped them a couple of weeks before starting LDN. Angie > For Angie and , are you takng any CRAB drugs with the LDN? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi Larry Thanks for letting me know this, it is definitely information that I will keep in mind. > > Angie, > > > > In all fairness to LDN, it's going to be difficult to pinpoint > anything under > > any circumstances. That's the " B " about MS! Nearly 5 years ago I > knew that > > I didn't feel quite right. I was stumbling occassionally and > having > > occassional spasms. (I now look back and realize that the > incredible need to stretch, > > as good as it felt, was a sign of things to come) I was on Avonex > and a few > > supplements. By Sept '99 I had need for a cane. By Oct '99 a > walker. Nov '99 > > this darned wheelchair! (That's when I gave up on Avonex - nothing > else was > > even suggested by my nuero - except to take one day at a time!) It > happened > > fast, and the burning pain and pins and needles have never let up > since that > > time. I started LDN this past November, hoping for some > improvement, but afraid > > to get my hopes too high. I've been fortunate because I have seen > some > > improvement. What I'm saying is, if you can still walk, that's > what you need to > > focus on. In my opinion, you may just have to deal with the pain, > quite a few > > that I know are doing just that and can't walk to boot! If LDN > could keep you > > up and on your feet, that would be worth the pain because you will > have a hard > > time working in the chair. I know because I work one day a week. > Police > > dispatcher in a small town. My co-workers are so good to me! They > have put > > nearly everything down low enougfh that I can reach. If I can't > reach a file that > > is up too high, my officer will help me out, but it is still hard > work for > > me! (I used to be able to practically manage with my eyes closed > and one hand > > tied behind my back!) It was hard to ask for help! I still say > that I wish I > > had known about LDN sooner! Don't give up! This may be one of > those things > > that would have happened anyway! Stick it out! > > > > Marcie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Please don't apologize. One of the reasons this site is wonderful is all the personal experiences and advice, and all of it is very appreciated. :-) Angie --- In low dose naltrexone , " cheystay " <c_chey@h...> wrote: > , I had terrible side effects for 4 weeks. Just to let you know. > > Angie, I hear ya. thats why I stopped LDN 3 nights and lowered the > dose. And thats why I skip a night now and then. But like said > before it could just as well be the MS itself, try to stop a few > nights and start over at low dose like 1,5mg or so. Uhm, I'm > repeating whats already been said, sorry. > > Chey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Wow, I’m glad to see there are other health rebels in this group, you’ve got a great attitude Angie, hang in there and hopefully with the plan you have in place, you’ll be able to see some results some Best of luck! -----Original Message----- From: angief1@... [mailto:angief1@...] Sent: Sunday, March 07, 2004 9:09 PM To: low dose naltrexone Subject: [low dose naltrexone] Tough decisions Hi Group I thank everybody for the information and advice I have received this past week. I have had to make some tough choices with regards to LDN. I am a single mom, so getting to point of not being able to work is not an option I have. The burning in my leg since starting LDN has not changed, in fact it is now spreading to my arm and my other leg and I am loosing strength in my leg as well now. I am not sure what is going on as there are alot of variables going on right now. So in order to give LDN a fair shot I have decided to stop it for now, get over whatever is going on, get off all med's, be med free for a month and give it another shot. I am too many meds right now so no way of knowing what is doing what to my body at this point. I have been on LDN for almost 3 weeks and just seem to be progressivly getting worse, never been this bad in the 7 years since I have been diagnosed and frankly it is scary. I will continue to read posts and gather information as I am serious about giving LDN another shot in the near future. It's the stubborn side of me coming out. :-) Keep your chins up and a smile on your face. Angie Quote Link to comment Share on other sites More sharing options...
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