Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Hi Deb, Because you have MS I would start on 1.5mg LDN for at least a month, then up to 3mg for another month before going to the max of 4.5mg. You may find you need to drop back to 3mg if you have increasing spacticity or muscle spasms. We all react differently but most of us have sleep disturbances for a few day when we start on LDN, I did for about a week when I started and when I upped my dose. There really is not much to add except make sure you are getting your LDN from a good compound pharmacy, take it between 9pm and 3am and do NOT take any narcotic pain meds. Hope that helps Sal > > I was diagnosed with MS in 1995 and have gotten to a point with the > disease that I am going to be starting LDN next week. Any suggestions > that would be helpful getting used to the drug? Any comments on side > effects? Any thing else you think I should know? > Thanks, Deb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Deb, I started LDN August 15, 2008, I was diagnosed with MS 2 years ago, I have been on Rebif for a year then Copaxone, after convincing my Dr. to prescribe LDN as long as I stayed on Copaxone, I started with 1.5 but after about a week, I stopped the injections and only took LDN. by Sept 7 I slowly went up to 4.5mg and been on it since then (I was impatient). I had some leg burning, but I had that when I was on Copaxone, I don't have that anymore, some nights I do wake up between 3 and 4am, with spasm on my right side (I think its my bladder, as I sometimes have problems voiding my bladder ), if I take 2 Advil, it goes away and go back to sleep (again I had that before LDN) I also still have some balance issues (it was worse before LDN), but overall I have more energy, I can walk for a longer period of time without stopping but best of all I do not have to take daily injection and for the first time since my diagnose I can definitely say that "I have MS,MS dos not have me" Good luck to you, remember that you have nothing to lose by trying LDN. [low dose naltrexone] New to LDN I was diagnosed with MS in 1995 and have gotten to a point with thedisease that I am going to be starting LDN next week. Any suggestionsthat would be helpful getting used to the drug? Any comments on sideeffects? Any thing else you think I should know?Thanks, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 This is my MS/LDN story: http://tinyurl.com/5tcp6r Email me if you need advice. Art -- > > I was diagnosed with MS in 1995 and have gotten to a point with the > disease that I am going to be starting LDN next week. Any suggestions > that would be helpful getting used to the drug? Any comments on side > effects? Any thing else you think I should know? > Thanks, Deb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 To Erma Romani, Message # 71228: Thanks for the great information, Erma. I am new to LDN, also...in fact, still trying to obtain it! I first heard of it (indirectly) from SammyJo of ldners.org, who communicated with my niece here in Mexico. The subject of MS came up, and how much better I feel and do here. She told my niece about her good experiences with LDN and recommended she share her letter with me, which my niece did. After investigating thoroughly (which I do with everything), I decided I need to try it. I have suffered from MS since the late 1970's, but wasn't diagnosed until years later, when I had a weird reaction to anesthetic while undergoing a hemithyroidectomy for a tumor. Three neurologists made a definitive diagnosis then of Relapsing Remitting Multiple Sclerosis, " retroactive " back to 1980 when my symptoms became more defined. In 2002, after an extremely stressful period and dramatic worsening of my symptoms, I was told by 2 neurologists in San , TX that the MS had " shifted gears " into Secondary Progressive. I was given a gloomy prognosis, but had already learned that no one knows my body as well as I do. I took my therapy, diet, etc., into my own hands and improved. In 2005, I moved back to Mexico (where I'd lived for many years earlier) to the Lake Chapala area (which I was new to). I experienced more rapid and impressive improvements. I've been on Copaxone injections since 2003, and am having difficulty with injections (not the Copaxone). Still, it has long been a goal of mine to eventually get off the Copaxone. LDN seems to be my best hope. I have many of the same symptoms you described: extreme spasticity, pain, fatigue, weakness, poor balance (though I walk daily w/wo a cane, after almost 3 years in a wheelchair from 2002 to 2005), bladder control difficulty, sleep disturbances, etc. Your results sound very encouraging to me, and I know I need to begin at the lower dosage. My big problem now is obtaining naltrexone. I've learned that it's available without hassle here in Mexico, but I haven't a clue as to where to start looking. I stay in touch with my primary neurologist in Texas, but with his agreement (and trust in me) I pretty much manage my own meds, informing him of changes. CAN ANYONE HELP WITH LOCATING PHARMACIES IN THE GUADALAJARA AREA WHICH SELL NALTREXONE? You can e-mail me if you like at tmss16@.... I really appreciate the help (in advance), and thanks to you and all others who have shared tips on beginning and maintaining LDN therapy. I am liking this site more and more all the time. What an interesting and courageous (my kind) group of people you all are! Tarra in Mexico Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Art, I read your story, I know how you feel, I too was a supervisor when I got my 1st MS attack under a lot of stress. I wish I and an angel by my side back then because I would have started LDN and not had to wait 12 years. Please keep inspiring us because we all need it. Love, Elena From: Art Hansen <rtee54@...>Subject: [low dose naltrexone] Re: New to LDNlow dose naltrexone Date: Saturday, October 11, 2008, 5:02 PM This is my MS/LDN story:http://tinyurl. com/5tcp6rEmail me if you need advice.Art-->> I was diagnosed with MS in 1995 and have gotten to a point with the> disease that I am going to be starting LDN next week. Any suggestions> that would be helpful getting used to the drug? Any comments on side> effects? Any thing else you think I should know?> Thanks, Deb> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 Dear Ingrid, I've gotten so many responses, I somehow overlooked yours, and so am just now reading and answering it. Copaxone (which I've been injecting for 5 1/2 years now) has always caused me to have vivid, extremely colorful, and sometimes bizarre dreams. I've gotten used to them, and have even learned to enjoy them as my " sleeptime movies. " Sometimes I even get interesting messages from my body in them. Copaxone also causes severe lowering of blood pressure for me. At first, I was going numb all over and blacking out from my BP dropping so much and so quickly. My neuro didn't know what to do; he said the dosage couldn't be altered, and that he felt I " had " to have it. I'm the one who figured out that injecting at bedtime (approximately the same time every night, whether I'm ready to go to sleep yet or not) was the solution. I tried it that way, and since I'm lying down reading, watching TV or a DVD, or otherwise relaxing, it works fine. So it makes sense to me that LDN taken late at night before sleeping (and while metabolism is slowed down) would be less likely to provoke side effects. It also seems like that would cause it to be absorbed in the system more gradually, thus being more effective, as well. I know there is no such thing as a " cure " in the sense that it will take me back where I was 30 or so years ago. I'm tickled pink with anything that helps me improve my quality of life, and suffer less. Several other alternative/natural therapies have, already. I'm hopeful LDN will also do that (even more), and will give it my best shot. I've finally located a convenient source from a pharmacy in nearby Guadalajara, and will be getting and starting the LDN shortly, after first doing a 3-day juice/water fast and cleansing my system as much as possible in preparation. I've learned that " flushing " the system, and resting and meditating and thinking positively for a few days first, makes any new therapy more successful, especially alternative therapies. I will be observing my own initial reactions, and " listening " to my body on how to manage any difficulties. But, after reading hundreds of posts, I have to agree with the person who wondered how on earth addicts can take 50 mg at once! Thanks for the " welcome " , and for all the insights you and everyone else have shared. I feel pretty well prepared, and am ready to " jump in with both feet, " so to speak. Tarra (at home at sunny, balmy Lake Chapala, Mexico) On Sun, Oct 12, 2008 at 8:34 AM, Gunn Dybfest <gunn.ingrid@...> wrote: Hi Tarra, welcome to our group, certainly a great group " knowing " and getting advice from. I learn something new each time I am here to read. I have Crohns disease, and have improved a lot on LDN. I get my rx from my doctor and use ReVia (50 mg naltrexone). I put one pill in 50 ml boiled water (cold) and dissolve it from the morning to the night. Store it in the refridgerator. If you buy pills it's not necessary. MS patients in here have this experience: some gets improvements on LDN. Some will only find that the disease is not being worse. All further symptoms is likely to not occur. LDN is not a cure, and has to be taken the rest of our life. Every night sometimes between 10.00 and 02.00. For MS patients it's of great importance to take the pill at night. Even if LDN in the beginning (the first weeks) will give sleep disturbances as delayed sleep and/or vivid dreams. This only happens to a few. It's LDN's most typical sideeffect and will go away within a couple of weeks if you get any at all. Please ask Crystal where to find a doctor: angelindisguise67@... Read at Crystals pages to learn more: http://crystalangel6267.webs.com/gazorpaldninfo.htm to obtain ldn: http://www.webspawner.com/users/howtoobtainldn/index.html How to make your own LDN: http://goodshape.net/HomemadeLDN.html Good luck, please keep us updated how you're doing :-)Friendly regards Ingrid [low dose naltrexone] New to LDNTo Erma Romani, Message # 71228:Thanks for the great information, Erma. I am new to LDN, also...in fact, still trying to obtain it! I first heard of it (indirectly) from SammyJo of ldners.org, who communicated with my niece here in Mexico. The subject of MS came up, and how much better I feel and do here. She told my niece about her good experiences with LDN and recommended she share her letter with me, which my niece did. After investigating thoroughly (which I do with everything), I decided I need to try it.I have suffered from MS since the late 1970's, but wasn't diagnosed until years later, when I had a weird reaction to anesthetic while undergoing a hemithyroidectomy for a tumor. Three neurologists made a definitive diagnosis then of Relapsing Remitting Multiple Sclerosis, " retroactive " back to 1980 when my symptoms became more defined.In 2002, after an extremely stressful period and dramatic worsening of my symptoms, I was told by 2 neurologists in San , TX that the MS had " shifted gears " into Secondary Progressive. I was given a gloomy prognosis, but had already learned that no one knows my body as well as I do. I took my therapy, diet, etc., into my own hands and improved.In 2005, I moved back to Mexico (where I'd lived for many years earlier) to the Lake Chapala area (which I was new to). I experienced more rapid and impressive improvements.I've been on Copaxone injections since 2003, and am having difficulty with injections (not the Copaxone). Still, it has long been a goal of mine to eventually get off the Copaxone. LDN seems to be my best hope. I have many of the same symptoms you described: extreme spasticity, pain, fatigue, weakness, poor balance (though I walk daily w/wo a cane, after almost 3 years in a wheelchair from 2002 to 2005), bladder control difficulty, sleep disturbances, etc.Your results sound very encouraging to me, and I know I need to begin at the lower dosage. My big problem now is obtaining naltrexone. I've learned that it's available without hassle here in Mexico, but I haven't a clue as to where to start looking. I stay in touch with my primary neurologist in Texas, but with his agreement (and trust in me) I pretty much manage my own meds, informing him of changes.CAN ANYONE HELP WITH LOCATING PHARMACIES IN THE GUADALAJARA AREA WHICH SELL NALTREXONE? You can e-mail me if you like at tmss16@.... I really appreciate the help (in advance), and thanks to you and all others who have shared tips on beginning and maintaining LDN therapy. I am liking this site more and more all the time. What an interesting and courageous (my kind) group of people you all are!Tarra in Mexico------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 I'm not currently on LDN, but used it for 9 months - I was not able to reduce my thyroid meds. Just FYI. I think it's more likely that you will be able to slow or stop the damage to your thyroid, and not have to increase meds further. Where do you get your b12 syringes? I was just diagnosed with PA. Thanks, > > > > > > Hi everyone, > > > I am going to start LDN soon and wanted to say hello. I am very > > new > > > to this drug so I have been reading through the postings getting > a > > > feel for it.... so far I'm pretty comfortable! I have the > > > following autoimmune diseases: > > > Hashimotos (thyroid) > > > s (adrenal) > > > Celiac > > > Pernicious Anemia (B12) > > > > > > That's it so far... RA, Lupus, Fibro, Lyme all ruled out. My Dr > is > > > wonderful and always open to trying new things so I return the > > favor > > > and do my homework. I'm going to keep reading through the > postings > > > so I can speak semi-intelligently to him in a few weeks. > > > > > > Thanks for being here!! > > > > > > Cory > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 > > I have secondary progressive MS, and began taking ldn therapy 8 days ago: 1.5 mg for seven days, 3 mg last night and hereafter. I am experiencing what I hope is " transient worsening " of muscle spasms and tightness. What time period is realistic to wait before determining whether the ldn is effective for me? > > The pharmacy I used (Specialty Pharmacy of St. Louis) should be reliable, and the prescription specified no lactose or calcium carbonate as fillers, but I read on the ldn website that worsening symptoms could be sign of inaccurate compounding. Should I be concerned yet? > > These issues may have been addressed recently; if so, I'm sorry. I am very excited about the possibilities that ldn might provide for me, and will appreciate your input. > > Thank you, > mssjms >============= Lactose is just fine as a filler unless you are allergic to lactose. I got extra stiffness in my calves for 3 solid months after starting LDN and then that extra stiffness faded away. Give LDN a good 9 months trial. , LDN user since July 2003, Progressive/Relapsing MS, on 4.5mg LDN with lactose filler Quote Link to comment Share on other sites More sharing options...
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