Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I understood the pharmacist description to be that of Revia, full dose. She seems to be promoting the CRAB drugs who's records only show a 20-30% success in progression reduction , if that much. If she is to state facts , she should give all facts. She should list the side effects of all the CRAB drugs and then let readers make an informed decision. She should alse refer them to www.remedyfind.com. I too want to hear different opinions backed by correct facts, but she neglected to quote the "CURRENT DISEASE MODIFYING THERAPIES" little fact sheets. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 OH, you should see the other messages, on MS People! She jumped all over me! Welcome to the club. She sent that same message to Marjees, MS People and MSTogetherness. ----- Original Message ----- From: low dose naltrexone Sent: Wednesday, November 12, 2003 09:22 Subject: [low dose naltrexone] I dont get it Recently I left LeeLee's group because insists that LDN is simply placebo effect, and her and another member practically insisted that trying LDN caused her to go into a serious exacerbation. After I left, posted this piece. Its amazing how there are people out there for some reason who just want to keep others uninformed:IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO HERE IT IS... Q. LOW DOSE NALTREXONE I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. A.MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK PROOF OF SAFETY AND EFFICACY. ELLEN GUTHRIE, PHARM. D. THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA(from LeeLee's MS group ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 correction, 's is an MSN group, not a group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Folks, I really don't see the problem with the below. Please be advised that I AM an LDN user, with the blessing of my neuro. The facts are right, that it is a narcotic antagonist. The facts of the article are semi-correct in that narcotics cannot be used with LDN--unless a doctor knows you are an LDN user and can up the dosage of narcotics if need be. I ran into this recently in the ER when I had a terrible migraine. It was nearing time for my dose of LDN, anyway, and they just gave me a little more narcotic than they would have with someone else. It is perfectly true that LDN can cause the side effects listed. It is also true that there are no clinical trials and that those are needed. I think 90% of LDN users would love to see clinical trials. To advocate that people take this instead of whatever interferons or chemo have been prescribed by their neuros is, in my opinion, deeply irresponsible. And as a pharmacologist, the woman who wrote the article would be irresponsible to suggest otherwise. People, I do believe the anecdotal data, and I find LDN's side effects to be minimal enough to try it. But if we become reluctant to hear anyone else's hesitance to try it, and if we attempt to dissuade others from taking the meds they have been prescribed, we do not make any friends. To tell you the truth, there are posts in these groups that make it sound like LDN users are a bunch of fringe loonies--a perception that we protest so much. Had I not read other anecdotes first and talked with scientists and others who explained how LDN might work with MS, had I simply visited this and other groups first, I might well have shied away from this as snake oil. I really believe that if we are to persuade others to give it a shot, we have to be respectful of contrary opinions and beliefs, and we have to be careful about making doctors and makers of other, clinically tested and approved products out to be wrong, while we have all the answers. Makes us sound like crackpots, and that's the last thing we want. Just my perception and opinion, as ever, Galoux > Recently I left LeeLee's group because insists that LDN is > simply placebo effect, and her and another member practically > insisted that trying LDN caused her to go into a serious > exacerbation. After I left, posted this piece. Its amazing how > there are people out there for some reason who just want to keep > others uninformed: > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > HERE IT IS... > > Q. LOW DOSE NALTREXONE > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > A. > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > PROOF OF SAFETY AND EFFICACY. > ELLEN GUTHRIE, PHARM. D. > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > (from LeeLee's MS group ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I need to add my 2 cents worth. Had I not tried LDN and read that article, I probably would never try it. But i am on LDN and it is doing good by me. I feel better than I have in years. Also Naltrexne in the higher dose might give your kidneys/ liver a problem but the low dose---I doubt it. Marie ----- Original Message ----- From: " Bou " <lswillia@...> <low dose naltrexone > Sent: Wednesday, November 12, 2003 12:55 PM Subject: Re: [low dose naltrexone] I dont get it > Folks, I really don't see the problem with the below. Please be advised that > I AM an LDN user, with the blessing of my neuro. > > The facts are right, that it is a narcotic antagonist. The facts of the > article are semi-correct in that narcotics cannot be used with LDN--unless a > doctor knows you are an LDN user and can up the dosage of narcotics if need > be. I ran into this recently in the ER when I had a terrible migraine. It > was nearing time for my dose of LDN, anyway, and they just gave me a little > more narcotic than they would have with someone else. > > It is perfectly true that LDN can cause the side effects listed. It is also > true that there are no clinical trials and that those are needed. I think > 90% of LDN users would love to see clinical trials. > > To advocate that people take this instead of whatever interferons or chemo > have been prescribed by their neuros is, in my opinion, deeply > irresponsible. And as a pharmacologist, the woman who wrote the article > would be irresponsible to suggest otherwise. > > People, I do believe the anecdotal data, and I find LDN's side effects to be > minimal enough to try it. But if we become reluctant to hear anyone else's > hesitance to try it, and if we attempt to dissuade others from taking the > meds they have been prescribed, we do not make any friends. To tell you the > truth, there are posts in these groups that make it sound like LDN users are > a bunch of fringe loonies--a perception that we protest so much. Had I not > read other anecdotes first and talked with scientists and others who > explained how LDN might work with MS, had I simply visited this and other > groups first, I might well have shied away from this as snake oil. > > I really believe that if we are to persuade others to give it a shot, we > have to be respectful of contrary opinions and beliefs, and we have to be > careful about making doctors and makers of other, clinically tested and > approved products out to be wrong, while we have all the answers. Makes us > sound like crackpots, and that's the last thing we want. > > Just my perception and opinion, as ever, > > Galoux > > > > > > > > > > > > > > > > > > > > > > > > > > > Recently I left LeeLee's group because insists that LDN is > > simply placebo effect, and her and another member practically > > insisted that trying LDN caused her to go into a serious > > exacerbation. After I left, posted this piece. Its amazing how > > there are people out there for some reason who just want to keep > > others uninformed: > > > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > > HERE IT IS... > > > > Q. LOW DOSE NALTREXONE > > > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > > > A. > > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > > PROOF OF SAFETY AND EFFICACY. > > ELLEN GUTHRIE, PHARM. D. > > > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > > > (from LeeLee's MS group ) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I think you have it in a nutshell. There are people who have run MS studies on endorphins who are saying it may be the reason interferon works. I would not venture to tell anyone not to use medication. Use LDN if you need to but don't let people on the internet interfere with your relationship with your doctor. -Sullivan > Folks, I really don't see the problem with the below. Please be advised that > I AM an LDN user, with the blessing of my neuro. > > The facts are right, that it is a narcotic antagonist. The facts of the > article are semi-correct in that narcotics cannot be used with LDN-- unless a > doctor knows you are an LDN user and can up the dosage of narcotics if need > be. I ran into this recently in the ER when I had a terrible migraine. It > was nearing time for my dose of LDN, anyway, and they just gave me a little > more narcotic than they would have with someone else. > > It is perfectly true that LDN can cause the side effects listed. It is also > true that there are no clinical trials and that those are needed. I think > 90% of LDN users would love to see clinical trials. > > To advocate that people take this instead of whatever interferons or chemo > have been prescribed by their neuros is, in my opinion, deeply > irresponsible. And as a pharmacologist, the woman who wrote the article > would be irresponsible to suggest otherwise. > > People, I do believe the anecdotal data, and I find LDN's side effects to be > minimal enough to try it. But if we become reluctant to hear anyone else's > hesitance to try it, and if we attempt to dissuade others from taking the > meds they have been prescribed, we do not make any friends. To tell you the > truth, there are posts in these groups that make it sound like LDN users are > a bunch of fringe loonies--a perception that we protest so much. Had I not > read other anecdotes first and talked with scientists and others who > explained how LDN might work with MS, had I simply visited this and other > groups first, I might well have shied away from this as snake oil. > > I really believe that if we are to persuade others to give it a shot, we > have to be respectful of contrary opinions and beliefs, and we have to be > careful about making doctors and makers of other, clinically tested and > approved products out to be wrong, while we have all the answers. Makes us > sound like crackpots, and that's the last thing we want. > > Just my perception and opinion, as ever, > > Galoux > > > > > > > > > > > > > > > > > > > > > > > > > > > Recently I left LeeLee's group because insists that LDN is > > simply placebo effect, and her and another member practically > > insisted that trying LDN caused her to go into a serious > > exacerbation. After I left, posted this piece. Its amazing how > > there are people out there for some reason who just want to keep > > others uninformed: > > > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > > HERE IT IS... > > > > Q. LOW DOSE NALTREXONE > > > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > > > A. > > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > > PROOF OF SAFETY AND EFFICACY. > > ELLEN GUTHRIE, PHARM. D. > > > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > > > (from LeeLee's MS group ) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Whoever wrote this is is using all caps. If disabled, that's ok. But if not it is considered shouting. -Sullivan > I think you have it in a nutshell. > > There are people who have run MS studies on endorphins who are saying > it may be the reason interferon works. I would not venture to tell > anyone not to use medication. Use LDN if you need to but don't let > people on the internet interfere with your relationship with your > doctor. > > -Sullivan > > --- In low dose naltrexone , " Bou " <lswillia@b...> wrote: > > Folks, I really don't see the problem with the below. Please be > advised that > > I AM an LDN user, with the blessing of my neuro. > > > > The facts are right, that it is a narcotic antagonist. The facts of > the > > article are semi-correct in that narcotics cannot be used with LDN-- > unless a > > doctor knows you are an LDN user and can up the dosage of narcotics > if need > > be. I ran into this recently in the ER when I had a terrible > migraine. It > > was nearing time for my dose of LDN, anyway, and they just gave me > a little > > more narcotic than they would have with someone else. > > > > It is perfectly true that LDN can cause the side effects listed. It > is also > > true that there are no clinical trials and that those are needed. I > think > > 90% of LDN users would love to see clinical trials. > > > > To advocate that people take this instead of whatever interferons > or chemo > > have been prescribed by their neuros is, in my opinion, deeply > > irresponsible. And as a pharmacologist, the woman who wrote the > article > > would be irresponsible to suggest otherwise. > > > > People, I do believe the anecdotal data, and I find LDN's side > effects to be > > minimal enough to try it. But if we become reluctant to hear anyone > else's > > hesitance to try it, and if we attempt to dissuade others from > taking the > > meds they have been prescribed, we do not make any friends. To tell > you the > > truth, there are posts in these groups that make it sound like LDN > users are > > a bunch of fringe loonies--a perception that we protest so much. > Had I not > > read other anecdotes first and talked with scientists and others who > > explained how LDN might work with MS, had I simply visited this and > other > > groups first, I might well have shied away from this as snake oil. > > > > I really believe that if we are to persuade others to give it a > shot, we > > have to be respectful of contrary opinions and beliefs, and we have > to be > > careful about making doctors and makers of other, clinically tested > and > > approved products out to be wrong, while we have all the answers. > Makes us > > sound like crackpots, and that's the last thing we want. > > > > Just my perception and opinion, as ever, > > > > Galoux > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Recently I left LeeLee's group because insists that LDN is > > > simply placebo effect, and her and another member practically > > > insisted that trying LDN caused her to go into a serious > > > exacerbation. After I left, posted this piece. Its amazing > how > > > there are people out there for some reason who just want to keep > > > others uninformed: > > > > > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN > ARTICLE > > > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > > > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS > SINCE I > > > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE > INSIGHT > > > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > > > HERE IT IS... > > > > > > Q. LOW DOSE NALTREXONE > > > > > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT > LOW > > > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > > > > > A. > > > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > > > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > > > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE > ACTION > > > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > > > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > > > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > > > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > > > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS > RELAPSES, > > > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > > > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > > > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > > > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > > > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > > > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT > LACK > > > PROOF OF SAFETY AND EFFICACY. > > > ELLEN GUTHRIE, PHARM. D. > > > > > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE > PURPOSE OF > > > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT > ALLOWS > > > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR > OURSELVES...LISA > > > > > > (from LeeLee's MS group ) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Obviously that's how she feels she has to get her point across, by yelling at you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 > Recently I left LeeLee's group because insists that LDN is > simply placebo effect, and her and another member practically > insisted that trying LDN caused her to go into a serious > exacerbation. After I left, posted this piece. Its amazing how > there are people out there for some reason who just want to keep > others uninformed: > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > HERE IT IS... > > Q. LOW DOSE NALTREXONE > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > A. > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > PROOF OF SAFETY AND EFFICACY. > ELLEN GUTHRIE, PHARM. D. > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > (from LeeLee's MS group ) ========================== I get MSFocus and I notice that the sponsors of that magazine are the makers of the CRAB's. I expected that sort of answer about LDN in such a magazine. You can also tell that the person answering the question did not do one bit of research on Low Dose Naltrexone in 3.0mg or 4.5mg. She only went by the FDA approved Naltrexone at 50mg and above. I know the Procarin Patch by Elaine DeLack was to undergo a clinical trial and the big pharmaceutical companies scared the little pharmaceutical company who said they'd do a trial away from its commitment to Elaine and the trial never took place. So far we are seeing clinical LDN trials in Mild Autism(successful), IBS(successful), and now Crohn's. These diseases I've listed do not have major $1200.00 a month drugs that clinical trials could threaten the existence of. I'd almost bet my bottom dollar that if MS did not have CRAB's, there would be no problem in getting a pharmaceutical company to do a clinical trial on LDN and MS. I smell Medical Politics in this and it's cruel and unusual punishment to the MS sufferer. Lupus or RA will probably get the next LDN clinical trial. LDN Trial with Crohn's http://www.hmc.psu.edu/colorectal/research/naltrexone.htm Dr. Jill is currently enrolling patients in a 4 month study to test the effectiveness of a low dose of naltrexone in offering relief to patients suffering from symptoms of Crohn's Disease. Eligibility Criteria 18 years of age Have endoscopic or x-ray confirmed active Crohn's disease Have normal liver enzymes Not have a surgical ostomy or ileocolic anastomosis Not take tacrolimus, cyclosporin, mycophenolate or Infliximab for 4 weeks prior to entering study Study Protocol Participants will have a complete physical, blood work taken, keep symptom diaries, complete questionnaires and continue with follow-up for 4 months. Cost of medication, office visits, and blood work are paid by the study. This research has been approved by the Institutional Review Board, under FDA regulations, at Penn State's College of Medicine. =================== Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 IDIOTS crop up every where!! AND, you don't even have to look for them. Noland ----- Original Message ----- From: " " <davizona@...> <low dose naltrexone > Sent: Wednesday, November 12, 2003 7:22 AM Subject: [low dose naltrexone] I dont get it > Recently I left LeeLee's group because insists that LDN is > simply placebo effect, and her and another member practically > insisted that trying LDN caused her to go into a serious > exacerbation. After I left, posted this piece. Its amazing how > there are people out there for some reason who just want to keep > others uninformed: > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > HERE IT IS... > > Q. LOW DOSE NALTREXONE > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > A. > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > PROOF OF SAFETY AND EFFICACY. > ELLEN GUTHRIE, PHARM. D. > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > (from LeeLee's MS group ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 You are correct! If she is going to talk about LDN, then she should get it in the proper contexts and state the facts. Which she did not. Noland ----- Original Message ----- From: noclue915@... lswillia@... Cc: low dose naltrexone Sent: Wednesday, November 12, 2003 11:37 AM Subject: Re: [low dose naltrexone] I dont get it I understood the pharmacist description to be that of Revia, full dose. She seems to be promoting the CRAB drugs who's records only show a 20-30% success in progression reduction , if that much. If she is to state facts , she should give all facts. She should list the side effects of all the CRAB drugs and then let readers make an informed decision. She should alse refer them to www.remedyfind.com. I too want to hear different opinions backed by correct facts, but she neglected to quote the "CURRENT DISEASE MODIFYING THERAPIES" little fact sheets. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Thanks for posting this. It sometimes feels like the members on this forum have a proprietary interest in the LDN therapy. Lets remember that there is no " proof " that LDN helps MS patients, OTHER THAN, our own personal experiences. We also need to acknowledge that the " proof " that our neuros and are looking for, will probably never be available. If you chose to get your MS information from MS Focus magazine, you're gonna hear what your neuro and the MS Society will tell you- the only " proven " treatment for MS patients are the abcr drugs. They have been " proven " to help 30% of RR patients , 30% of the time. Why they work or how they work is still a mystery but trials have shown these results. Most MS patients will go with this treatment because it's " proven " . We need to take personal responsibility for our own MS treatment and make our own decisions based on experience. I've know about my MS for over ten years. I decided not to take the abcr drugs because they don't work for most people, they're very expensive and the side effects are often much worse than any possible benefit. I've decided to try LDN because it's unlikely to be toxic in such low doses, it's cheap and there are few, if any, side effects. If it stops the progression of the disease, I'll be ECSTATIC!!!!! If it doesn't I'm out several hundred dollars. It's worth a try. " Different strokes, for different folks " . The more information we have the more informed our personal decisions will be. Let's not shout down folks who have different opinions. The CURE for MS will come from people with different opinions. All the best to everyone. Rick > Folks, I really don't see the problem with the below. Please be advised that > I AM an LDN user, with the blessing of my neuro. > > The facts are right, that it is a narcotic antagonist. The facts of the > article are semi-correct in that narcotics cannot be used with LDN-- unless a > doctor knows you are an LDN user and can up the dosage of narcotics if need > be. I ran into this recently in the ER when I had a terrible migraine. It > was nearing time for my dose of LDN, anyway, and they just gave me a little > more narcotic than they would have with someone else. > > It is perfectly true that LDN can cause the side effects listed. It is also > true that there are no clinical trials and that those are needed. I think > 90% of LDN users would love to see clinical trials. > > To advocate that people take this instead of whatever interferons or chemo > have been prescribed by their neuros is, in my opinion, deeply > irresponsible. And as a pharmacologist, the woman who wrote the article > would be irresponsible to suggest otherwise. > > People, I do believe the anecdotal data, and I find LDN's side effects to be > minimal enough to try it. But if we become reluctant to hear anyone else's > hesitance to try it, and if we attempt to dissuade others from taking the > meds they have been prescribed, we do not make any friends. To tell you the > truth, there are posts in these groups that make it sound like LDN users are > a bunch of fringe loonies--a perception that we protest so much. Had I not > read other anecdotes first and talked with scientists and others who > explained how LDN might work with MS, had I simply visited this and other > groups first, I might well have shied away from this as snake oil. > > I really believe that if we are to persuade others to give it a shot, we > have to be respectful of contrary opinions and beliefs, and we have to be > careful about making doctors and makers of other, clinically tested and > approved products out to be wrong, while we have all the answers. Makes us > sound like crackpots, and that's the last thing we want. > > Just my perception and opinion, as ever, > > Galoux > > > > > > > > > > > > > > > > > > > > > > > > > > > Recently I left LeeLee's group because insists that LDN is > > simply placebo effect, and her and another member practically > > insisted that trying LDN caused her to go into a serious > > exacerbation. After I left, posted this piece. Its amazing how > > there are people out there for some reason who just want to keep > > others uninformed: > > > > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN ARTICLE > > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION > > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE I > > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE INSIGHT > > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO > > HERE IT IS... > > > > Q. LOW DOSE NALTREXONE > > > > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT LOW > > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS. > > > > A. > > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS. > > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS > > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE ACTION > > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE > > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA, > > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE > > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC) > > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS RELAPSES, > > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS > > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO > > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT > > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE > > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR > > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT LACK > > PROOF OF SAFETY AND EFFICACY. > > ELLEN GUTHRIE, PHARM. D. > > > > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE OF > > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT ALLOWS > > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA > > > > (from LeeLee's MS group ) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2010 Report Share Posted June 27, 2010 None of this makes any sense, I walked into the bathroom this morning and I was hit pretty hard with brain fog and loss of balance what worries me this isnt the first time it's happened. I feel like Im fighting a losing battle and no matter how hard I try the micotoxins will win in the long run > > Yeah that is a good question. Some days i feel so good and blessed to be healthy again, then some days i feel that same brain fog and weakness again and my speech gets all messed up. I just started doing ozone steam sauna and it seems like its helping alot. Im thinking (ofcourse im not a doctor) that some of the toxic spores get stuck in some parts of our bodies that medicine cant readily address. For instance i heard of this one child (cant remeber the diagnosis name) that had toxins stored in all the nerve endings in his body causing a host of health issues. I would suggest doing your research on toxic ridding modalities, i.e. steam saunas etc etc. as a complimentary to your Doctors recommendations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2010 Report Share Posted June 28, 2010 Thank you Jeanine Im just so sick and tired of dealing with this the worst part is my being hypersensitivity isn't going to go away in a week, a month or even a year. This is going to take a long time no matter how diligent I am at avoiding toxic areas. > > Tug, it get's better, may take awhile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2010 Report Share Posted June 28, 2010 Jeaninem, This is why people with MCS and weak immune systems due to mold-exposure... are in the best place to tell what is safe to be around, and what is a burden to the body. I would like to get yours and other's input. I'd like to know what you have found, through personal experience, to be a body burden. What things that are generally known to be " unhealthy " do not cause any reactions in your body? My voice is weak and struggling, due to mold exposure, and I can tell that mowing the lawn with a gas lawn-mower was very hard on my throat. When I mowed it with a mold-grade 3M gas-mask, I could mow without a problem. I can also tell that sleeping out-doors is better than sleeping indoors, except when there is a halo around the moon. When the halo is thick, it's hard on my system. Sleeping on the couch (probably soaked in flame-retardants) is extremely hard on my system. Sleeping next to my dog is no burden at all. regards, Research 1844 > > Tug, it get's better, may take awhile. with practiceing avoidance your symptoms well mellow out a little, than you start reconizeing a chemical hit when you get one and you have to play detective and figure it out and try to avoid it. wash your sinuses, take a shower, whatever helps. lot's of people try lots of things, but advoidance is key to giveing your body a chance at healing from what it's been put through. it may take awhile. you are going to get slammed with re-exposures everytime you try to venture out. after awhile you start learning when and where you can push yourself a little to do something normal again and you will also realize that theres no sure fired medthod to know and avoid all cercumstances, but you'll be suprized at what things you come up with to work around it. > I know it's hard right now, your so reactive and it seems everytime you turn around your gettting zapped. > your life well change in that you will seek out the good zones and > avoid the bad ones AMAP. as much as possable. Quote Link to comment Share on other sites More sharing options...
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