Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Hello Everyone, Sun, 09 May 2004 16:56:23 -0000 " yashagrawal " <yashagrawal@...> wrote: Subject: Boycott MS societies ? This is something I have been mulling over a long time. Just reading about the MS societies, I wonder if they have the interests of MS patients as their foremost priority. Various attempts by MS'ers to discuss LDN with them have not made any headway. The only voice they support is of the drug companies. I think the next time they approach me for donations, I will let them know that I will only support them if they support/fund research on LDN. If enough people do it, it will hurt their pocket book and they will sit up and take notice. They fund a lot of questionable research and they really should fund LDN too. If this seems like a good idea, perhaps a movement/petition to boycott MS societies will get their attention. The media will also get involved and they will be forced into funding a trial. FWIW, Yash Thought when I read this--what a great idea, Yash. In light of the NMSS Naltrexone Update it's even more imperative we call them to task with a boycott, picketing, letter writing campaign and the like. How disheartening! I'd been out of the loop here for quite awhile. Now, seemingly wasting a lot of time and what little energy I've had compiling LDN info for my neuro. She read the LDN website info and a few other things I'd brought to her back in March. Wouldn't write a script, but was receptive to researching it further. I see her at a university teaching & research health center. I thought it worthwhile to collect as much pertinent info on LDN & naltrexone as possible for her to consider, possibly further our cause. My quest had been delayed due to RRMS probably SP now, as well as, that lousy Sasser virus--corrupted my compilation of research just as I was about to send it to my neuro. I'm concerned this NMSS article will put an end to any possibility of her taking LDN seriously. It is absolutely outrageous that there are things that should be available, that can help those suffering to whatever degree, yet so many of us are denied by doctors, insurers, our government, narrowed research or unethical implications proferred as science. I've finally caught up on all the LDN digests overflowing my e-box trying to recoup some of the info I`d lost. I'd missed reading everyone's posts. Some great stuff, especially the letters in response to Bowling's assertions. But maxbtm's post " Re: MS Society's lastest damning comments on LDN_This is the real study What they are rewording is the following article " citing http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=400409 is mistaken. The study info cited by Bowling was actually posted on this board some time ago, by whom, I don`t recall. I've pasted it below. I wonder if a retraction is possible, I don't believe Bowling is justified in drawing blanket conclusions on LDN based on this. I'm fearful not only that my doctor won't prescribe LDN for me based on his article, but that doctors already prescribing it for many of you will renege. Some time ago there was mention made of those with scripts possibly convincing your doctors to write letters verifying your improvement since taking LDN. Any follow through on this? I was also looking forward to an update from Tom since the neuro appointment May 11, I think had been noted. Any luck, Tom? Hopefully, you can share some good news. Take care, all! Lesa http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=7514185 Display Abstract 1: J Neuroimmunol. 1994 May;51(2):169-76. Related Articles, Links Beta-endorphin concentrations in brain areas and peritoneal macrophages in rats susceptible and resistant to experimental allergic encephalomyelitis: a possible relationship between tumor necrosis factor alpha and opioids in the disease. Panerai AE, Radulovic J, Monastra G, Manfredi B, Locatelli L, Sacerdote P. Department of Pharmacology, University of Milan, Italy. Since the central nervous system and neuropeptides modulate immune functions, we investigated whether the different susceptibility of and Brown Norway rats to experimental allergic encephalomyelitis could also reflect differences in beta-endorphin and substance P concentrations in brain areas and macrophages during the development of the disease. We show that beta-endorphin concentrations increase much more in the hypothalamus and macrophages of rats during the development of the disease, while the increase is much lower or absent in Brown Norway rats. Tumor necrosis factor-alpha seems to play an important role in this difference. The administration of the opiate receptor antagonist naltrexone worsens the development of the disease, suggesting that the increase of the opioid beta-endorphin might represent a mechanism to downregulate the immune response. In both strains, the concentrations of substance P do not change. PMID: 7514185 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display & DB=pubmed Display Citation 1: J Neuroimmunol. 1994 May;51(2):169-76. Related Articles, Links Beta-endorphin concentrations in brain areas and peritoneal macrophages in rats susceptible and resistant to experimental allergic encephalomyelitis: a possible relationship between tumor necrosis factor alpha and opioids in the disease. Panerai AE, Radulovic J, Monastra G, Manfredi B, Locatelli L, Sacerdote P. Department of Pharmacology, University of Milan, Italy. Since the central nervous system and neuropeptides modulate immune functions, we investigated whether the different susceptibility of and Brown Norway rats to experimental allergic encephalomyelitis could also reflect differences in beta-endorphin and substance P concentrations in brain areas and macrophages during the development of the disease. We show that beta-endorphin concentrations increase much more in the hypothalamus and macrophages of rats during the development of the disease, while the increase is much lower or absent in Brown Norway rats. Tumor necrosis factor-alpha seems to play an important role in this difference. The administration of the opiate receptor antagonist naltrexone worsens the development of the disease, suggesting that the increase of the opioid beta-endorphin might represent a mechanism to downregulate the immune response. In both strains, the concentrations of substance P do not change. MeSH Terms: Animals Brain Chemistry* Encephalomyelitis, Experimental Autoimmune/immunology* Immunoglobulin G/blood Macrophages, Peritoneal/chemistry* Male Naltrexone/pharmacology Rats Rats, Inbred BN Rats, Inbred Lew Substance P/analysis Tumor Necrosis Factor/pharmacology Tumor Necrosis Factor/secretion* beta-Endorphin/analysis* Substances: Immunoglobulin G Tumor Necrosis Factor Naltrexone Substance P beta-Endorphin PMID: 7514185 [PubMed - indexed for MEDLINE] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Thanks for the interest. Yeah, I started on the 12th actually - could not find a compounding pharmacy right away. 3 mg. First day slept all day. Second day - slept on and off most of the day. Third day - up half the day. Blurriness gone from my right eye. That has been there for years! Fourth day - generally tired, but up. Gotta work. I take some speed - not too much - when I just have to get something done. But BE CAREFUL. It is really esy to abuse. Not communicating never helps much. My advice is keep a dialogue going, ie. as with MS societies, even if it does get bitchy sometimes. Thanks again for your interest. Tom from Edmonton ---- Original Message ----- From: Lesa low dose naltrexone Sent: Saturday, May 15, 2004 6:27 PM Subject: [low dose naltrexone] Re: Q.E.D Hello Everyone,Sun, 09 May 2004 16:56:23 -0000 "yashagrawal" <yashagrawal@...> wrote:Subject: Boycott MS societies ? This is something I have been mulling over a long time. Just reading about the MS societies, I wonder if they have the interests of MS patients as their foremost priority. Various attempts by MS'ers to discuss LDN with them have not made any headway. The only voice they support is of the drug companies. I think the next time they approach me for donations, I will let them know that I will only support them if they support/fund research on LDN. If enough people do it, it will hurt their pocket book and they will sit up and take notice. They fund a lot of questionable research and they really should fund LDN too. If this seems like a good idea, perhaps a movement/petition to boycott MS societies will get their attention. The media will also get involved and they will be forced into funding a trial. FWIW, Yash Thought when I read this--what a great idea, Yash. In light of the NMSS Naltrexone Update it's even more imperative we call them to task with a boycott, picketing, letter writing campaign and the like.How disheartening! I'd been out of the loop here for quite awhile. Now, seemingly wasting a lot of time and what little energy I've had compiling LDN info for my neuro. She read the LDN website info and a few other things I'd brought to her back in March. Wouldn't write a script, but was receptive to researching it further. I see her at a university teaching & research health center. I thought it worthwhile to collect as much pertinent info on LDN & naltrexone as possible for her to consider, possibly further our cause. My quest had been delayed due to RRMS probably SP now, as well as, that lousy Sasser virus--corrupted my compilation of research just as I was about to send it to my neuro. I'm concerned this NMSS article will put an end to any possibility of her taking LDN seriously. It is absolutely outrageous that there are things that should be available, that can help those suffering to whatever degree, yet so many of us are denied by doctors, insurers, our government, narrowed research or unethical implications proferred as science. I've finally caught up on all the LDN digests overflowing my e-box trying to recoup some of the info I`d lost. I'd missed reading everyone's posts. Some great stuff, especially the letters in response to Bowling's assertions. But maxbtm's post "Re: MS Society's lastest damning comments on LDN_This is the real study What they are rewording is the following article" citing http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=400409is mistaken. The study info cited by Bowling was actually posted on this board some time ago, by whom, I don`t recall. I've pasted it below. I wonder if a retraction is possible, I don't believe Bowling is justified in drawing blanket conclusions on LDN based on this. I'm fearful not only that my doctor won't prescribe LDN for me based on his article, but that doctors already prescribing it for many of you will renege. Some time ago there was mention made of those with scripts possibly convincing your doctors to write letters verifying your improvement since taking LDN. Any follow through on this? I was also looking forward to an update from Tom since the neuro appointment May 11, I think had been noted. Any luck, Tom? Hopefully, you can share some good news.Take care, all!Lesahttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=7514185Display Abstract1: J Neuroimmunol. 1994 May;51(2):169-76. Related Articles, Links Beta-endorphin concentrations in brain areas and peritoneal macrophages in rats susceptible and resistant to experimental allergic encephalomyelitis: a possible relationship between tumor necrosis factor alpha and opioids in the disease.Panerai AE, Radulovic J, Monastra G, Manfredi B, Locatelli L, Sacerdote P.Department of Pharmacology, University of Milan, Italy.Since the central nervous system and neuropeptides modulate immune functions, we investigated whether the different susceptibility of and Brown Norway rats to experimental allergic encephalomyelitis could also reflect differences in beta-endorphin and substance P concentrations in brain areas and macrophages during the development of the disease. We show that beta-endorphin concentrations increase much more in the hypothalamus and macrophages of rats during the development of the disease, while the increase is much lower or absent in Brown Norway rats. Tumor necrosis factor-alpha seems to play an important role in this difference. The administration of the opiate receptor antagonist naltrexone worsens the development of the disease, suggesting that the increase of the opioid beta-endorphin might represent a mechanism to downregulate the immune response. In both strains, the concentrations of substance P do not change.PMID: 7514185 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display & DB=pubmedDisplay Citation1: J Neuroimmunol. 1994 May;51(2):169-76. Related Articles, Links Beta-endorphin concentrations in brain areas and peritoneal macrophages in rats susceptible and resistant to experimental allergic encephalomyelitis: a possible relationship between tumor necrosis factor alpha and opioids in the disease.Panerai AE, Radulovic J, Monastra G, Manfredi B, Locatelli L, Sacerdote P.Department of Pharmacology, University of Milan, Italy.Since the central nervous system and neuropeptides modulate immune functions, we investigated whether the different susceptibility of and Brown Norway rats to experimental allergic encephalomyelitis could also reflect differences in beta-endorphin and substance P concentrations in brain areas and macrophages during the development of the disease. We show that beta-endorphin concentrations increase much more in the hypothalamus and macrophages of rats during the development of the disease, while the increase is much lower or absent in Brown Norway rats. Tumor necrosis factor-alpha seems to play an important role in this difference. The administration of the opiate receptor antagonist naltrexone worsens the development of the disease, suggesting that the increase of the opioid beta-endorphin might represent a mechanism to downregulate the immune response. In both strains, the concentrations of substance P do not change.MeSH Terms: Animals Brain Chemistry* Encephalomyelitis, Experimental Autoimmune/immunology* Immunoglobulin G/blood Macrophages, Peritoneal/chemistry* Male Naltrexone/pharmacology Rats Rats, Inbred BN Rats, Inbred Lew Substance P/analysis Tumor Necrosis Factor/pharmacology Tumor Necrosis Factor/secretion* beta-Endorphin/analysis* Substances: Immunoglobulin G Tumor Necrosis Factor Naltrexone Substance P beta-Endorphin PMID: 7514185 [PubMed - indexed for MEDLINE] Quote Link to comment Share on other sites More sharing options...
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