Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 That's not at all unusual for old symptoms to crop up in the first few month. It took a long time for your Imunne System to get messed up. Give the LDN time to work. Your old symptoms may not go away completely....some do, some don't.....but remember the real reason for taking LDN, is to stop the progression of disability......the rest is icing on the cake. Hugs, SallyC angief1@s... wrote: Hi I am new to LDN about a week ago I started taking a 3.0mg dose. I have experienced increased burning in my left leg, was taking gabapentin for that but it seemed to stop working. I really want to continue the LDN. Can somebody tell me if this is normal for starting on LDN and how long before it eases off or goes away. Or even suggestions of what can help would be wonderful. About right now I would really like to just order a new leg or cut this one off at the knee. :-) Any feed back would be appreciated. Thanks Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Welcome, I too had some burning and itching----but I believe that it was " nerves " that hadn't felt for a long time, coming back to reality. I also was getting Charlie Horses in my upper thighs and bumm...every time I turned over in bed----I have been having trouble turning in bed, as these muscles were not working properly. Now I have been on LDN for three weeks, and much of that has disappeared, though my feet continue to go back and forth from numb to normal ...<S> Pam _________________________________________________________________ Store more e-mails with MSN Hotmail Extra Storage – 4 plans to choose from! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Try reducing your dosage, quite a few of us are taking 3mg instead of 4.5. May appetite changed when I first started, then I had an upset stomach that came and went. I thought it was the LDN until my husband came down with the same thing. He's still fighting mild nausea and he is not taking LDN. Although the sudden nausea that troubled us both is no longer bothering me I do still occasionally feel a bit nauseated, but then realize that I haven't eaten and should have. I think the change in appetite is the LDN, and the occasional nausea is caused by my stomach being empty. Boy, that is sure an unusual thing for me! I did lose weight when I first began the LDN, but now that I'm eating when I should instead of skipping meals I've stopped losing. Too bad... Best of luck! (MS) ----- Original Message ----- From: " msblonde716 " <msblonde716@...> <low dose naltrexone > Sent: Wednesday, March 31, 2004 5:03 AM Subject: [low dose naltrexone] New to LDN > I just started to take LDN on Saturday night. I'm taking 4.5 mgs. > However, I'm feeling a bit sick to my stomach.. Has this happened to > anyone? I also dont' have the energy that people talk about. Does > that come later??? I have RRMS and was dx 2001. Any suggestions??? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 By my calculations you are only on your third day with ldn. Have patience you have only just begun the amazing ldn. journey. Reg. -------Original Message------- From: low dose naltrexone Date: 03/31/04 07:57:30 low dose naltrexone Subject: Re: [low dose naltrexone] New to LDN Try reducing your dosage, quite a few of us are taking 3mg instead of 4.5.May appetite changed when I first started, then I had an upset stomach thatcame and went. I thought it was the LDN until my husband came down with thesame thing. He's still fighting mild nausea and he is not taking LDN.Although the sudden nausea that troubled us both is no longer bothering me Ido still occasionally feel a bit nauseated, but then realize that I haven'teaten and should have. I think the change in appetite is the LDN, and theoccasional nausea is caused by my stomach being empty. Boy, that is sure anunusual thing for me! I did lose weight when I first began the LDN, but nowthat I'm eating when I should instead of skipping meals I've stopped losing.Too bad...Best of luck! (MS)----- Original Message ----- From: "msblonde716" <msblonde716@...><low dose naltrexone >Sent: Wednesday, March 31, 2004 5:03 AMSubject: [low dose naltrexone] New to LDN> I just started to take LDN on Saturday night. I'm taking 4.5 mgs.> However, I'm feeling a bit sick to my stomach.. Has this happened to> anyone? I also dont' have the energy that people talk about. Does> that come later??? I have RRMS and was dx 2001. Any suggestions???>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Reg gave me a great tip a little while ago and that’s take your capsules back to your compounder and ask them to remake them into 1.5. I started slow and low so that I could introduce the drug in a way I could monitor it’s affects etc… and know what was good for me I did 1.5mg for a week with seemingly no effect the night I started 3 was miraculous and I had immediate reactions for symptom improvement which over more time grew to more things since on 4.5 things have gone backwards a bit and I’ve gone back to a lower dose. Wish you the best of luck ;o) From: msblonde716 [mailto:msblonde716@...] Sent: Wednesday, March 31, 2004 8:04 AM low dose naltrexone Subject: [low dose naltrexone] New to LDN I just started to take LDN on Saturday night. I'm taking 4.5 mgs. However, I'm feeling a bit sick to my stomach.. Has this happened to anyone? I also dont' have the energy that people talk about. Does that come later??? I have RRMS and was dx 2001. Any suggestions??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Msblonde, before you can make assumptions and start changing your dose, try to stick with your 4.5mm for awhile. If you continue to feel sick to your stomach, then try going from 4.5 to 3mm. In fact instead of getting a new script just take some ldn out of your 4.5 capsule. Several of us have done this and it works well. Good luck!\ (MS) -----Original Message----- From: msblonde716 [mailto:msblonde716@...] Sent: Wednesday, March 31, 2004 8:04 AM To: low dose naltrexone Subject: [low dose naltrexone] New to LDN I just started to take LDN on Saturday night. I'm taking 4.5 mgs. However, I'm feeling a bit sick to my stomach.. Has this happened to anyone? I also dont' have the energy that people talk about. Does that come later??? I have RRMS and was dx 2001. Any suggestions??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Thanks, I wish I could, but I have to mail any long term scripts to my prescription coverage. I'm going to see how it goes for another week and if I'm still sick-ish, I will ask my doctor to re-write it for 3 mgs and go from there..... I should have asked him to write for the 3 to begin with... ugh.. thanks again! > Reg gave me a great tip a little while ago and that's take your capsules > back to your compounder and ask them to remake them into 1.5. I started slow > and low so that I could introduce the drug in a way I could monitor it's > affects etc. and know what was good for me I did 1.5mg for a week with > seemingly no effect the night I started 3 was miraculous and I had immediate > reactions for symptom improvement which over more time grew to more things > since on 4.5 things have gone backwards a bit and I've gone back to a lower > dose. > > > > Wish you the best of luck ;o) > > > > > > > > _____ > > From: msblonde716 [mailto:msblonde716@y...] > Sent: Wednesday, March 31, 2004 8:04 AM > low dose naltrexone > Subject: [low dose naltrexone] New to LDN > > > > I just started to take LDN on Saturday night. I'm taking 4.5 mgs. > However, I'm feeling a bit sick to my stomach.. Has this happened to > anyone? I also dont' have the energy that people talk about. Does > that come later??? I have RRMS and was dx 2001. Any suggestions??? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Steve, I know that no one has any hard answers, but I want to ask you something. I was stiff to begin with (very stiff). What are the chances that this symptom will see some relief in time? There's nothing I can do except just deal with it. Some days it is less than others, but for the most part, I'm always stiff. I alternate between 3mg and 4.5mg LDN w/calcium carbonate filler. I had cornstarch in the beginning (Nov 3, 2003), but that caused terrible bowel problems for me. I'm not giving up on LDN! Marcie (PPMS) In a message dated 4/2/2004 8:19:09 AM Central Standard Time, stevetazzer@... writes: Subj:[low dose naltrexone] Re: New to LDN Date:4/2/2004 8:19:09 AM Central Standard Time From: stevetazzer@... (stevetazzer) Reply-to: low dose naltrexone low dose naltrexone ---Best of luck Arlene! I'm SPMS and on no other meds except LDN and some MJ every now and then! Give it time, endure the stiffness, you will notice results! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Tom, First off I want to thank you for your book " Coping and Prevailing " . I just finished it and appreciate what you have gone through. I have had MS for 24+ years and am considering LDN. You have had MS for a long time too and your experience with this drug is what made me decide to ask my GP for it. She is much more open minded than my neuro and will do this for me. My symptoms at present are fatigue, bladder urgency and spasms, weakness in walking, and hand numbness. All in all not too bad for all these years. I started on Betaseron and presently taking Copaxone. I would love to stop injecting myself and look forward to never having Solu-Medrol again. I hate that drug, but it does stop exacerbations. This is my first post since joining 3 weeks ago and would appreciate any feedback. Thank you, > Steve & Marcie, > I was also very stiff before starting LDN last July 4.5mg. I have remained stiff most of that time. Two weeks ago Dr. Bihari suggested reducing the dose to 3.0mg. I did that and at the same time I started to take 100mg of " Benfotiamine " a lipid form of Vit. B-1 or Thiamine four times a day. > > There has been some improvement with the stiffness. Some days are dramatically improved and some days not but definitely noticeable. > Regards, > Tom Quote Link to comment Share on other sites More sharing options...
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