Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Hi All, First, thanks to LarryGC for " fighting the establishment " over at MSWatch and getting information on LDN and this group out there. It looks like the " experts " at that site are slowly coming around; this was the most recent " Ask the Expert " involving LDN: " Low Dose Naltrexone and Secondary Progressive Disease Q: I read an article on the web about taking Low Dose Naltrexone in a tablet form, one a day at bedtime. The reported results were quite amazing, 98-99 percent of people with MS taking this had no exacerbations. The outcome was the same for both remitting-relapsing and chronic progressive. I have secondary progressive and would like more information regarding this. Have you had experience with this, it is an opioid antagonist, but a low dosage. Thank you for your consideration. A: As you may know, the use of naltrexone in low doses is championed by Dr. Bernard Bihari, through his website, for a number of medical conditions. In higher doses, naltrexone is approved by the FDA for the treatment of heroin addiction but not for the treatment of MS. Naltrexone is an opiate antagonist (blocking agent) and its purpose is to block the opiate receptors that heroin acts on in the brain. As far as I can tell, there have been no placebo- controlled trials of naltrexone in multiple sclerosis. I would therefore caution people about using it since we have so little data on its potential side effects and interactions. Remember, it can make narcotic pain medications less effective. In addition, it can cause difficulty sleeping and problems with liver functioning. Jody Corey-Bloom, MD, PhD May 2003 " --Not perfect, but better than the " quack, quack " noises earlier " experts " were making. Also, on a personal note, I'm currently undergoing treatment at the Yale MS Clinic. I'm currently into my 5th dose of Novantrone, and while I'm doing very well on it (returned to mobility and work after spending much of last summer in a wheelchair) I'm not entirely comfortable being on it. That said, I printed out the information on LDN and M.S. from the .org site and gave it to Dr. Rizzo on my most recent visit. While he questioned some things like the 99% success rate, he didn't dismiss it out of hand, as I feared he might. So keep trying to get the word out, everyone! -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 For anyone GENUINELY concerned about liver damage, how do you feel about Zanaflex (Tizanadine), a relatively new FDA approved med used specifically to control spasms for patients suffering from MS, cerebral palsy, etc..? Long term use can, in some cases cause liver damage severe enough to cause death: http://www.cerebral-palsy.net/update2001/zanaflex1.html#why -----Original Message-----From: LarryGC [mailto:larrygc@...]Sent: Sunday, June 29, 2003 2:48 PMLDN groupSubject: Fw: [low dose naltrexone] The word getting out?Difficulty sleeping and liver problems. Well.. .from DAY ONE my wife said Iwas sleeping a lot more peacefully than ever before, and she knows me 22 years.As for the liver problems, that was shown at 300 mg, but not at 50 mg... solet's see... 3 mg a day, takes 100 days to have 300 mg behind you.However, I think it would be a good idea if I go back for some of the bloodworkI have baselines for from last year and back through 1999. Just to compare.Did I ask you guys about your body temperature? Anyone take theirs before LDNand monitor it since? I have to go take my temperature again... it seems to berunning 98.4 to 98.8 nowadays. For the last 4 decades, well, 3 actually, it'sbeen 96.2-97.6.----- Original Message ----- From: "fanboy71" <b_a_fletch@...><low dose naltrexone >Sent: Sunday, June 29, 2003 07:29Subject: [low dose naltrexone] The word getting out?> Hi All,>> First, thanks to LarryGC for "fighting the establishment" over at> MSWatch and getting information on LDN and this group out there. It> looks like the "experts" at that site are slowly coming around; this> was the most recent "Ask the Expert" involving LDN:>>>>[,,,]> --Not perfect, but better than the "quack, quack" noises> earlier "experts" were making.>> Also, on a personal note, I'm currently undergoing treatment at the> Yale MS Clinic. I'm currently into my 5th dose of Novantrone, and> while I'm doing very well on it (returned to mobility and work after> spending much of last summer in a wheelchair) I'm not entirely> comfortable being on it. That said, I printed out the information on> LDN and M.S. from the .org site and gave it to Dr. Rizzo on my most> recent visit. While he questioned some things like the 99% success> rate, he didn't dismiss it out of hand, as I feared he might. So> keep trying to get the word out, everyone!>How many people gave it up here so far? I read from one guy, who has sincedisappeared, that he was taking it and stopped because he thought all his priorsymptoms were returning. He was taking Rebif, Allegra and about 4 other dailydoses of potent meds... but he gave up the LDN instead of all the others. Healso scared the hell out of himself.I WANT to hear complains about this LDN. I can't come up with too many myself,so I want to hear them to see if maybe I'm not noticing something. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Difficulty sleeping and liver problems. Well.. .from DAY ONE my wife said I was sleeping a lot more peacefully than ever before, and she knows me 22 years. As for the liver problems, that was shown at 300 mg, but not at 50 mg... so let's see... 3 mg a day, takes 100 days to have 300 mg behind you. However, I think it would be a good idea if I go back for some of the bloodwork I have baselines for from last year and back through 1999. Just to compare. Did I ask you guys about your body temperature? Anyone take theirs before LDN and monitor it since? I have to go take my temperature again... it seems to be running 98.4 to 98.8 nowadays. For the last 4 decades, well, 3 actually, it's been 96.2-97.6. ----- Original Message ----- From: " fanboy71 " <b_a_fletch@...> <low dose naltrexone > Sent: Sunday, June 29, 2003 07:29 Subject: [low dose naltrexone] The word getting out? > Hi All, > > First, thanks to LarryGC for " fighting the establishment " over at > MSWatch and getting information on LDN and this group out there. It > looks like the " experts " at that site are slowly coming around; this > was the most recent " Ask the Expert " involving LDN: > > >>[,,,] > --Not perfect, but better than the " quack, quack " noises > earlier " experts " were making. > > Also, on a personal note, I'm currently undergoing treatment at the > Yale MS Clinic. I'm currently into my 5th dose of Novantrone, and > while I'm doing very well on it (returned to mobility and work after > spending much of last summer in a wheelchair) I'm not entirely > comfortable being on it. That said, I printed out the information on > LDN and M.S. from the .org site and gave it to Dr. Rizzo on my most > recent visit. While he questioned some things like the 99% success > rate, he didn't dismiss it out of hand, as I feared he might. So > keep trying to get the word out, everyone! > How many people gave it up here so far? I read from one guy, who has since disappeared, that he was taking it and stopped because he thought all his prior symptoms were returning. He was taking Rebif, Allegra and about 4 other daily doses of potent meds... but he gave up the LDN instead of all the others. He also scared the hell out of himself. I WANT to hear complains about this LDN. I can't come up with too many myself, so I want to hear them to see if maybe I'm not noticing something. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Since the first night that I started LDN, I have been sleeping like I did when I was a kid. Never could slep before LDN. Marie ----- Original Message ----- From: " LarryGC " <larrygc@...> " LDN group " <low dose naltrexone > Sent: Sunday, June 29, 2003 2:47 PM Subject: Fw: [low dose naltrexone] The word getting out? > Difficulty sleeping and liver problems. Well.. .from DAY ONE my wife said I > was sleeping a lot more peacefully than ever before, and she knows me 22 years. > > As for the liver problems, that was shown at 300 mg, but not at 50 mg... so > let's see... 3 mg a day, takes 100 days to have 300 mg behind you. > > However, I think it would be a good idea if I go back for some of the bloodwork > I have baselines for from last year and back through 1999. Just to compare. > > Did I ask you guys about your body temperature? Anyone take theirs before LDN > and monitor it since? I have to go take my temperature again... it seems to be > running 98.4 to 98.8 nowadays. For the last 4 decades, well, 3 actually, it's > been 96.2-97.6. > > > > ----- Original Message ----- > From: " fanboy71 " <b_a_fletch@...> > <low dose naltrexone > > Sent: Sunday, June 29, 2003 07:29 > Subject: [low dose naltrexone] The word getting out? > > > > Hi All, > > > > First, thanks to LarryGC for " fighting the establishment " over at > > MSWatch and getting information on LDN and this group out there. It > > looks like the " experts " at that site are slowly coming around; this > > was the most recent " Ask the Expert " involving LDN: > > > > > >>[,,,] > > --Not perfect, but better than the " quack, quack " noises > > earlier " experts " were making. > > > > Also, on a personal note, I'm currently undergoing treatment at the > > Yale MS Clinic. I'm currently into my 5th dose of Novantrone, and > > while I'm doing very well on it (returned to mobility and work after > > spending much of last summer in a wheelchair) I'm not entirely > > comfortable being on it. That said, I printed out the information on > > LDN and M.S. from the .org site and gave it to Dr. Rizzo on my most > > recent visit. While he questioned some things like the 99% success > > rate, he didn't dismiss it out of hand, as I feared he might. So > > keep trying to get the word out, everyone! > > > > > How many people gave it up here so far? I read from one guy, who has since > disappeared, that he was taking it and stopped because he thought all his prior > symptoms were returning. He was taking Rebif, Allegra and about 4 other daily > doses of potent meds... but he gave up the LDN instead of all the others. He > also scared the hell out of himself. > > I WANT to hear complains about this LDN. I can't come up with too many myself, > so I want to hear them to see if maybe I'm not noticing something. > > > > > > Quote Link to comment Share on other sites More sharing options...
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