Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 I too, was given the prescript for LDN from Dr. Sullivan. The test he has us (I presume) taking is a Heavy Metal Toxicity test -- especially for mercury, as 80% of the " MS " patients he sees (he regards all diseases of the immune system to be immune-deficiency rather than immune under/over activity) have mercury toxicity. I asked him what the source could be as I never eat fish (I'm allergic) and he said " amalgams - as in dental fillings " . So, I will be taking the test to see if there is Hg toxicity. I started on LDN 5 days ago and so far I haven't seen progress, but I am being patient; I was told to give it a couple months. I'm also doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. My only symptom is balance problems so I feel very lucky. I wish you much luck, Guy. Please keep us informed with your progress as I will. Phil On Wed, 30 Apr 2003, blueswede06 wrote: > Today I had my telephone conference with Dr. Sullivan. At the > conclusion, he agreed to write a prescription for LDN. I am very > exited about this. My neuro still wants to discuss ABCs, but won't > discuss or consider any other treatments. I should have the LDN by > Thursday afternoon. Dr. Sullivan also recommended several tests I > should have run on me, that my neuro and GP have never mentioned. > I will post my experiences with the LDN. Currenlty, I suffer > from EXTREME fatigue, temperature sensitive, a lot of pain in my > left shoulder and arm-constant, and recurring pain in my left ankle > and wrist. I have had much trouble sleeping for about 6-7 months > now, also. I am currently on 100mg. of neurontin, 4 times a day for > the pain, and muscle spasms. Occaisionally, my left wrist is so > sore, I cannot use it. This is my baseline, I will communicate any > changes after I start the LDN. If any of this information helps > someone else out, this will be time well spent. I am very, very > fortunate as my symptoms and their effects are evidently very minor, > in comparison to what they could be. Best wishes to my fellow MSers, > together we will hopefully beat this thing. > Guy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Hi , Good luck on your journey with the LDN. I just get a bit puzzled by comments that people always make about how they don't see any improvement. I'm confused cuz, the way I understand it, LDN is meant to stop progression rather then to make a hugh difference in symptoms. I think it's important to stress this, only because someone might take it with the expectation that somehow they will feel some kind of improvement. If they don't see any, they might figure it is not working for them and stop it. I feel that would be the wrong thing to do cuz it is supposed to halt the progression of any further damage and is not touted for helping to improve previous damage. Just thought I'd mention this for anyone listening. I really do wish all an exciting journey with this path we are all on. It really is a pretty brave thing for all of us to do here and I choose to look at it as an adventure that we are all embarking on. Here's to it paying off...*S*. Joyce. >From: " G. Harding " <philh@...> >blueswede06 <blueswede06@...> >CC: low dose naltrexone >Subject: Re: [low dose naltrexone] LDN Prescription >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > >I too, was given the prescript for LDN from Dr. Sullivan. The test he has >us (I presume) taking is a Heavy Metal Toxicity test -- especially for >mercury, as 80% of the " MS " patients he sees (he regards all diseases of >the immune system to be immune-deficiency rather than immune under/over >activity) have mercury toxicity. I asked him what the source could be as I >never eat fish (I'm allergic) and he said " amalgams - as in dental >fillings " . So, I will be taking the test to see if there is Hg >toxicity. I started on LDN 5 days ago and so far I haven't seen progress, >but I am being patient; I was told to give it a couple months. I'm also >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. >My only symptom is balance problems so I feel very lucky. I wish you much >luck, Guy. Please keep us informed with your progress as I will. >Phil > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > Today I had my telephone conference with Dr. Sullivan. At the > > conclusion, he agreed to write a prescription for LDN. I am very > > exited about this. My neuro still wants to discuss ABCs, but won't > > discuss or consider any other treatments. I should have the LDN by > > Thursday afternoon. Dr. Sullivan also recommended several tests I > > should have run on me, that my neuro and GP have never mentioned. > > I will post my experiences with the LDN. Currenlty, I suffer > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > left shoulder and arm-constant, and recurring pain in my left ankle > > and wrist. I have had much trouble sleeping for about 6-7 months > > now, also. I am currently on 100mg. of neurontin, 4 times a day for > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > sore, I cannot use it. This is my baseline, I will communicate any > > changes after I start the LDN. If any of this information helps > > someone else out, this will be time well spent. I am very, very > > fortunate as my symptoms and their effects are evidently very minor, > > in comparison to what they could be. Best wishes to my fellow MSers, > > together we will hopefully beat this thing. > > Guy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 yes, I agree and didn't mean to indicate that I was expecting some big turn around in symptoms but if it does stop the progression of the disease then we should stabilize with where we are, right? Cited from the website: (at the very least, we should expect a reduction in fatigue and spasticity or am I interpreting this wrong?) www.low dose naltrexone.org ------------------------------------------------------------------------ LDN and Multiple Sclerosis (MS) In Brief Over the past few years, growing experience with the clinical use of LDN demonstrates its consistency in preventing further attacks in people with MS. In addition, a majority of such patients note reductions in spasticity and fatigue. On Wed, 30 Apr 2003, wkendz 32 wrote: > Hi , > Good luck on your journey with the LDN. I just get a bit puzzled by comments > that people always make about how they don't see any improvement. I'm > confused cuz, the way I understand it, LDN is meant to stop progression > rather then to make a hugh difference in symptoms. I think it's important to > stress this, only because someone might take it with the expectation that > somehow they will feel some kind of improvement. If they don't see any, they > might figure it is not working for them and stop it. I feel that would be > the wrong thing to do cuz it is supposed to halt the progression of any > further damage and is not touted for helping to improve previous damage. > Just thought I'd mention this for anyone listening. I really do wish all an > exciting journey with this path we are all on. It really is a pretty brave > thing for all of us to do here and I choose to look at it as an adventure > that we are all embarking on. Here's to it paying off...*S*. Joyce. > > > > > > > >From: " G. Harding " <philh@...> > >blueswede06 <blueswede06@...> > >CC: low dose naltrexone > >Subject: Re: [low dose naltrexone] LDN Prescription > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > > > >I too, was given the prescript for LDN from Dr. Sullivan. The test he has > >us (I presume) taking is a Heavy Metal Toxicity test -- especially for > >mercury, as 80% of the " MS " patients he sees (he regards all diseases of > >the immune system to be immune-deficiency rather than immune under/over > >activity) have mercury toxicity. I asked him what the source could be as I > >never eat fish (I'm allergic) and he said " amalgams - as in dental > >fillings " . So, I will be taking the test to see if there is Hg > >toxicity. I started on LDN 5 days ago and so far I haven't seen progress, > >but I am being patient; I was told to give it a couple months. I'm also > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. > >My only symptom is balance problems so I feel very lucky. I wish you much > >luck, Guy. Please keep us informed with your progress as I will. > >Phil > > > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > > > Today I had my telephone conference with Dr. Sullivan. At the > > > conclusion, he agreed to write a prescription for LDN. I am very > > > exited about this. My neuro still wants to discuss ABCs, but won't > > > discuss or consider any other treatments. I should have the LDN by > > > Thursday afternoon. Dr. Sullivan also recommended several tests I > > > should have run on me, that my neuro and GP have never mentioned. > > > I will post my experiences with the LDN. Currenlty, I suffer > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > > left shoulder and arm-constant, and recurring pain in my left ankle > > > and wrist. I have had much trouble sleeping for about 6-7 months > > > now, also. I am currently on 100mg. of neurontin, 4 times a day for > > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > > sore, I cannot use it. This is my baseline, I will communicate any > > > changes after I start the LDN. If any of this information helps > > > someone else out, this will be time well spent. I am very, very > > > fortunate as my symptoms and their effects are evidently very minor, > > > in comparison to what they could be. Best wishes to my fellow MSers, > > > together we will hopefully beat this thing. > > > Guy > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Who is Dr. Sullivan that everyone seems to be speaking of and to? Where is he located - I am in NJ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 He is just outside of burg, PA. He has familiarity with prescribing LDN for MS symptoms. Let me know if you need his phone#, I received it from the researcher at Penn State who discovered naltrexone and is currently doing research on it wrt OGF and endorphins. phil On Wednesday, April 30, 2003, at 10:41 AM, JMFRANKEN@... wrote: > Who is Dr. Sullivan that everyone seems to be speaking of and to? > Where is he located - I am in NJ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Joyce, I agree that we have to keep in mind that LDN is meant to stop the progression of MS. After 4 weeks on LDN, I haven't seen a major change although I seem to just feel better which is a tremendous benefit even if I'm still using a walker to get around. It's just that I know that some have seen improvement, so I had HIGH hopes that I would see some of the same improvements. But, if LDN stops the progression and at the same time isn't harming other parts of our body like some of the other drugs do . . YEAH! I'm happy for that! -----Original Message-----From: wkendz 32 [mailto:wkendz32@...]Sent: Wednesday, April 30, 2003 8:22 AMphilh@...Cc: low dose naltrexone Subject: Re: [low dose naltrexone] LDN PrescriptionHi ,Good luck on your journey with the LDN. I just get a bit puzzled by comments that people always make about how they don't see any improvement. I'm confused cuz, the way I understand it, LDN is meant to stop progression rather then to make a hugh difference in symptoms. I think it's important to stress this, only because someone might take it with the expectation that somehow they will feel some kind of improvement. If they don't see any, they might figure it is not working for them and stop it. I feel that would be the wrong thing to do cuz it is supposed to halt the progression of any further damage and is not touted for helping to improve previous damage. Just thought I'd mention this for anyone listening. I really do wish all an exciting journey with this path we are all on. It really is a pretty brave thing for all of us to do here and I choose to look at it as an adventure that we are all embarking on. Here's to it paying off...*S*. Joyce.>From: " G. Harding" <philh@...>>blueswede06 <blueswede06@...>>CC: low dose naltrexone >Subject: Re: [low dose naltrexone] LDN Prescription>Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT)>>I too, was given the prescript for LDN from Dr. Sullivan. The test he has>us (I presume) taking is a Heavy Metal Toxicity test -- especially for>mercury, as 80% of the "MS" patients he sees (he regards all diseases of>the immune system to be immune-deficiency rather than immune under/over>activity) have mercury toxicity. I asked him what the source could be as I>never eat fish (I'm allergic) and he said "amalgams - as in dental>fillings". So, I will be taking the test to see if there is Hg>toxicity. I started on LDN 5 days ago and so far I haven't seen progress,>but I am being patient; I was told to give it a couple months. I'm also>doing supplements (vitamins), oils, and Calcium EAP 1g/day orally.>My only symptom is balance problems so I feel very lucky. I wish you much>luck, Guy. Please keep us informed with your progress as I will.>Phil>>On Wed, 30 Apr 2003, blueswede06 wrote:>> > Today I had my telephone conference with Dr. Sullivan. At the> > conclusion, he agreed to write a prescription for LDN. I am very> > exited about this. My neuro still wants to discuss ABCs, but won't> > discuss or consider any other treatments. I should have the LDN by> > Thursday afternoon. Dr. Sullivan also recommended several tests I> > should have run on me, that my neuro and GP have never mentioned.> > I will post my experiences with the LDN. Currenlty, I suffer> > from EXTREME fatigue, temperature sensitive, a lot of pain in my> > left shoulder and arm-constant, and recurring pain in my left ankle> > and wrist. I have had much trouble sleeping for about 6-7 months> > now, also. I am currently on 100mg. of neurontin, 4 times a day for> > the pain, and muscle spasms. Occaisionally, my left wrist is so> > sore, I cannot use it. This is my baseline, I will communicate any> > changes after I start the LDN. If any of this information helps> > someone else out, this will be time well spent. I am very, very> > fortunate as my symptoms and their effects are evidently very minor,> > in comparison to what they could be. Best wishes to my fellow MSers,> > together we will hopefully beat this thing.> > Guy> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Just to chime in, I feel great! I exercise and take supplements and LDN and I feel absolutely healthy/great until I have to walk, then I am reminded I have a disease (it's like a guest who refuses to leave). When I first checked into LDN, some recommended the Histamine patch for symptom reduction ( I still haven't received my promised free sample) http://www.histamineangel.com but maybe that's why bee venom works as well (histamines). On Wed, 30 Apr 2003, CK Connie King (1452) wrote: > Joyce, > > I agree that we have to keep in mind that LDN is meant to stop the > progression of MS. After 4 weeks on LDN, I haven't seen a major change > although I seem to just feel better which is a tremendous benefit even if > I'm still using a walker to get around. It's just that I know that some > have seen improvement, so I had HIGH hopes that I would see some of the same > improvements. But, if LDN stops the progression and at the same time isn't > harming other parts of our body like some of the other drugs do . . YEAH! > I'm happy for that! > > -----Original Message----- > From: wkendz 32 [mailto:wkendz32@...] > Sent: Wednesday, April 30, 2003 8:22 AM > philh@... > Cc: low dose naltrexone > Subject: Re: [low dose naltrexone] LDN Prescription > > > Hi , > Good luck on your journey with the LDN. I just get a bit puzzled by comments > > that people always make about how they don't see any improvement. I'm > confused cuz, the way I understand it, LDN is meant to stop progression > rather then to make a hugh difference in symptoms. I think it's important to > > stress this, only because someone might take it with the expectation that > somehow they will feel some kind of improvement. If they don't see any, they > > might figure it is not working for them and stop it. I feel that would be > the wrong thing to do cuz it is supposed to halt the progression of any > further damage and is not touted for helping to improve previous damage. > Just thought I'd mention this for anyone listening. I really do wish all an > exciting journey with this path we are all on. It really is a pretty brave > thing for all of us to do here and I choose to look at it as an adventure > that we are all embarking on. Here's to it paying off...*S*. Joyce. > > > > > > > >From: " G. Harding " <philh@...> > >blueswede06 <blueswede06@...> > >CC: low dose naltrexone > >Subject: Re: [low dose naltrexone] LDN Prescription > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > > > >I too, was given the prescript for LDN from Dr. Sullivan. The test he has > >us (I presume) taking is a Heavy Metal Toxicity test -- especially for > >mercury, as 80% of the " MS " patients he sees (he regards all diseases of > >the immune system to be immune-deficiency rather than immune under/over > >activity) have mercury toxicity. I asked him what the source could be as I > >never eat fish (I'm allergic) and he said " amalgams - as in dental > >fillings " . So, I will be taking the test to see if there is Hg > >toxicity. I started on LDN 5 days ago and so far I haven't seen progress, > >but I am being patient; I was told to give it a couple months. I'm also > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. > >My only symptom is balance problems so I feel very lucky. I wish you much > >luck, Guy. Please keep us informed with your progress as I will. > >Phil > > > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > > > Today I had my telephone conference with Dr. Sullivan. At the > > > conclusion, he agreed to write a prescription for LDN. I am very > > > exited about this. My neuro still wants to discuss ABCs, but won't > > > discuss or consider any other treatments. I should have the LDN by > > > Thursday afternoon. Dr. Sullivan also recommended several tests I > > > should have run on me, that my neuro and GP have never mentioned. > > > I will post my experiences with the LDN. Currenlty, I suffer > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > > left shoulder and arm-constant, and recurring pain in my left ankle > > > and wrist. I have had much trouble sleeping for about 6-7 months > > > now, also. I am currently on 100mg. of neurontin, 4 times a day for > > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > > sore, I cannot use it. This is my baseline, I will communicate any > > > changes after I start the LDN. If any of this information helps > > > someone else out, this will be time well spent. I am very, very > > > fortunate as my symptoms and their effects are evidently very minor, > > > in comparison to what they could be. Best wishes to my fellow MSers, > > > together we will hopefully beat this thing. > > > Guy > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Great news , that you are doing so well. I think the supplement thing is important too cuz while the body is in the repair faze after an attack, it needs all the help it can get to help get the body repaired. That's the way I've always looked at it. I take a lot of supplements...probably too many really. Do you take methylcobalamin? As far as your histamine sample. Try again. No reason why you should not have gotten it yet. You can ask goodshape on the site bulletin board and see what is going on. I agree about the correlation between the histamine and bee venom therapy. Connie, great to hear that you are just feeling better. If nothing else that is a great benefit for sure. Joyce >From: " G. Harding " <philh@...> > " CK Connie King (1452) " <connie.king@...> >CC: " 'wkendz 32' " <wkendz32@...>, ><low dose naltrexone > >Subject: RE: [low dose naltrexone] LDN Prescription >Date: Wed, 30 Apr 2003 15:53:25 -0400 (EDT) > >Just to chime in, I feel great! I exercise and take supplements and LDN >and I feel absolutely healthy/great until I have to walk, then I am >reminded I have a disease (it's like a guest who refuses to leave). >When I first checked into LDN, some recommended the Histamine patch for >symptom reduction ( I still haven't received my promised free sample) >http://www.histamineangel.com but maybe that's why bee venom works as well >(histamines). > >On Wed, 30 Apr 2003, CK Connie King (1452) wrote: > > > Joyce, > > > > I agree that we have to keep in mind that LDN is meant to stop the > > progression of MS. After 4 weeks on LDN, I haven't seen a major >change > > although I seem to just feel better which is a tremendous benefit even >if > > I'm still using a walker to get around. It's just that I know that >some > > have seen improvement, so I had HIGH hopes that I would see some of the >same > > improvements. But, if LDN stops the progression and at the same time >isn't > > harming other parts of our body like some of the other drugs do . . >YEAH! > > I'm happy for that! > > > > -----Original Message----- > > From: wkendz 32 [mailto:wkendz32@...] > > Sent: Wednesday, April 30, 2003 8:22 AM > > philh@... > > Cc: low dose naltrexone > > Subject: Re: [low dose naltrexone] LDN Prescription > > > > > > Hi , > > Good luck on your journey with the LDN. I just get a bit puzzled by >comments > > > > that people always make about how they don't see any improvement. I'm > > confused cuz, the way I understand it, LDN is meant to stop progression > > rather then to make a hugh difference in symptoms. I think it's >important to > > > > stress this, only because someone might take it with the expectation >that > > somehow they will feel some kind of improvement. If they don't see any, >they > > > > might figure it is not working for them and stop it. I feel that would >be > > the wrong thing to do cuz it is supposed to halt the progression of any > > further damage and is not touted for helping to improve previous damage. > > Just thought I'd mention this for anyone listening. I really do wish all >an > > exciting journey with this path we are all on. It really is a pretty >brave > > thing for all of us to do here and I choose to look at it as an >adventure > > that we are all embarking on. Here's to it paying off...*S*. Joyce. > > > > > > > > > > > > > > >From: " G. Harding " <philh@...> > > >blueswede06 <blueswede06@...> > > >CC: low dose naltrexone > > >Subject: Re: [low dose naltrexone] LDN Prescription > > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > > > > > >I too, was given the prescript for LDN from Dr. Sullivan. The test he >has > > >us (I presume) taking is a Heavy Metal Toxicity test -- especially for > > >mercury, as 80% of the " MS " patients he sees (he regards all diseases >of > > >the immune system to be immune-deficiency rather than immune under/over > > >activity) have mercury toxicity. I asked him what the source could be >as I > > >never eat fish (I'm allergic) and he said " amalgams - as in dental > > >fillings " . So, I will be taking the test to see if there is Hg > > >toxicity. I started on LDN 5 days ago and so far I haven't seen >progress, > > >but I am being patient; I was told to give it a couple months. I'm also > > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. > > >My only symptom is balance problems so I feel very lucky. I wish you >much > > >luck, Guy. Please keep us informed with your progress as I will. > > >Phil > > > > > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > > > > > Today I had my telephone conference with Dr. Sullivan. At the > > > > conclusion, he agreed to write a prescription for LDN. I am very > > > > exited about this. My neuro still wants to discuss ABCs, but won't > > > > discuss or consider any other treatments. I should have the LDN by > > > > Thursday afternoon. Dr. Sullivan also recommended several tests I > > > > should have run on me, that my neuro and GP have never mentioned. > > > > I will post my experiences with the LDN. Currenlty, I suffer > > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > > > left shoulder and arm-constant, and recurring pain in my left ankle > > > > and wrist. I have had much trouble sleeping for about 6-7 months > > > > now, also. I am currently on 100mg. of neurontin, 4 times a day for > > > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > > > sore, I cannot use it. This is my baseline, I will communicate any > > > > changes after I start the LDN. If any of this information helps > > > > someone else out, this will be time well spent. I am very, very > > > > fortunate as my symptoms and their effects are evidently very minor, > > > > in comparison to what they could be. Best wishes to my fellow MSers, > > > > together we will hopefully beat this thing. > > > > Guy > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 I also am trying to taking more supplements and trying to eat less fat, less red meat, less foods with white flour and less sugar. IT IS SO HARD sometimes! What is methylcobalamin? Is this a perscription drug or something that I could get from a health food store? -----Original Message-----From: wkendz 32 [mailto:wkendz32@...]Sent: Thursday, May 01, 2003 7:25 AMphilh@...Cc: low dose naltrexone Subject: RE: [low dose naltrexone] LDN PrescriptionGreat news , that you are doing so well. I think the supplement thing is important too cuz while the body is in the repair faze after an attack, it needs all the help it can get to help get the body repaired. That's the way I've always looked at it. I take a lot of supplements...probably too many really. Do you take methylcobalamin? As far as your histamine sample. Try again. No reason why you should not have gotten it yet. You can ask goodshape on the site bulletin board and see what is going on. I agree about the correlation between the histamine and bee venom therapy.Connie, great to hear that you are just feeling better. If nothing else that is a great benefit for sure. Joyce>From: " G. Harding" <philh@...>>"CK Connie King (1452)" <connie.king@...>>CC: "'wkendz 32'" <wkendz32@...>, ><low dose naltrexone >>Subject: RE: [low dose naltrexone] LDN Prescription>Date: Wed, 30 Apr 2003 15:53:25 -0400 (EDT)>>Just to chime in, I feel great! I exercise and take supplements and LDN>and I feel absolutely healthy/great until I have to walk, then I am>reminded I have a disease (it's like a guest who refuses to leave).>When I first checked into LDN, some recommended the Histamine patch for>symptom reduction ( I still haven't received my promised free sample)>http://www.histamineangel.com but maybe that's why bee venom works as well>(histamines).>>On Wed, 30 Apr 2003, CK Connie King (1452) wrote:>> > Joyce,> >> > I agree that we have to keep in mind that LDN is meant to stop the> > progression of MS. After 4 weeks on LDN, I haven't seen a major >change> > although I seem to just feel better which is a tremendous benefit even >if> > I'm still using a walker to get around. It's just that I know that >some> > have seen improvement, so I had HIGH hopes that I would see some of the >same> > improvements. But, if LDN stops the progression and at the same time >isn't> > harming other parts of our body like some of the other drugs do . . >YEAH!> > I'm happy for that!> >> > -----Original Message-----> > From: wkendz 32 [mailto:wkendz32@...]> > Sent: Wednesday, April 30, 2003 8:22 AM> > philh@...> > Cc: low dose naltrexone > > Subject: Re: [low dose naltrexone] LDN Prescription> >> >> > Hi ,> > Good luck on your journey with the LDN. I just get a bit puzzled by >comments> >> > that people always make about how they don't see any improvement. I'm> > confused cuz, the way I understand it, LDN is meant to stop progression> > rather then to make a hugh difference in symptoms. I think it's >important to> >> > stress this, only because someone might take it with the expectation >that> > somehow they will feel some kind of improvement. If they don't see any, >they> >> > might figure it is not working for them and stop it. I feel that would >be> > the wrong thing to do cuz it is supposed to halt the progression of any> > further damage and is not touted for helping to improve previous damage.> > Just thought I'd mention this for anyone listening. I really do wish all >an> > exciting journey with this path we are all on. It really is a pretty >brave> > thing for all of us to do here and I choose to look at it as an >adventure> > that we are all embarking on. Here's to it paying off...*S*. Joyce.> >> >> >> >> >> >> > >From: " G. Harding" <philh@...>> > >blueswede06 <blueswede06@...>> > >CC: low dose naltrexone > > >Subject: Re: [low dose naltrexone] LDN Prescription> > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT)> > >> > >I too, was given the prescript for LDN from Dr. Sullivan. The test he >has> > >us (I presume) taking is a Heavy Metal Toxicity test -- especially for> > >mercury, as 80% of the "MS" patients he sees (he regards all diseases >of> > >the immune system to be immune-deficiency rather than immune under/over> > >activity) have mercury toxicity. I asked him what the source could be >as I> > >never eat fish (I'm allergic) and he said "amalgams - as in dental> > >fillings". So, I will be taking the test to see if there is Hg> > >toxicity. I started on LDN 5 days ago and so far I haven't seen >progress,> > >but I am being patient; I was told to give it a couple months. I'm also> > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally.> > >My only symptom is balance problems so I feel very lucky. I wish you >much> > >luck, Guy. Please keep us informed with your progress as I will.> > >Phil> > >> > >On Wed, 30 Apr 2003, blueswede06 wrote:> > >> > > > Today I had my telephone conference with Dr. Sullivan. At the> > > > conclusion, he agreed to write a prescription for LDN. I am very> > > > exited about this. My neuro still wants to discuss ABCs, but won't> > > > discuss or consider any other treatments. I should have the LDN by> > > > Thursday afternoon. Dr. Sullivan also recommended several tests I> > > > should have run on me, that my neuro and GP have never mentioned.> > > > I will post my experiences with the LDN. Currenlty, I suffer> > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my> > > > left shoulder and arm-constant, and recurring pain in my left ankle> > > > and wrist. I have had much trouble sleeping for about 6-7 months> > > > now, also. I am currently on 100mg. of neurontin, 4 times a day for> > > > the pain, and muscle spasms. Occaisionally, my left wrist is so> > > > sore, I cannot use it. This is my baseline, I will communicate any> > > > changes after I start the LDN. If any of this information helps> > > > someone else out, this will be time well spent. I am very, very> > > > fortunate as my symptoms and their effects are evidently very minor,> > > > in comparison to what they could be. Best wishes to my fellow MSers,> > > > together we will hopefully beat this thing.> > > > Guy> > > >> > > >> > > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Hi there Connie, I copied this from the lef.org site. Hope it answers your question about what methylcobalamin is. I've been taking it sublingually for years. Many elderly people suffering from neurological impairment find that B12 supplementation greatly improves their cognitive function. Published studies show that vitamin B12 in supplement form is absorbed better by elderly people than vitamin B12 that is bound to food. Vitamin B12 is only found in animal source foods and is often deficient in vegetarian diets. Japanese scientists have identified a form of vitamin B12 that protects against neurological disease and aging by a unique mechanism that differs from current therapies. Some of the diseases that may be prevented or treated by this natural vitamin therapy include Parkinson’s disease, peripheral neuropathies, Alzheimer’s disease, muscular dystrophy, and neurological aging. Americans have immediate access to thisvitamin B12 analog and unlike prescription drugs, this natural therapy costs very little and is free of side effects. Vitamin B12 is a general term used to define a group of essential biological compounds known as “cobalamins.” The cobalamins are structurally related to hemoglobin in the blood, and a deficiency of vitamin B12 can produce an anemic state in the body. Conventional doctors’ primary concern with maintaining adequate cobalamin status is to protect against anemia. Over the last ten years, however, a number of central and peripheral neurological disease states have been related to a deficiency of a specific cobalamin. The most common form of vitamin B12 is “cyanocobalamin.” While cyanocobalamin works well to prevent anemia, it is the “methylcobalamin” form that is required to protect against neurological disease and aging. The liver naturally converts a small amount of cyanocobalamin into methylcobalamin, but to correct neurological defects and protect against aging, larger amounts of methylcobalamin are necessary. Published studies show that high doses of methylcobalamin are needed to regenerate neurons and the myelin sheath that protects axons and peripheral nerves. Animal studies have shown that high doses of methylcobalamin are effective in neuronal regeneration. There is no known toxicity at these doses. Hope this helps...Joyce. >From: " CK Connie King (1452) " <connie.king@...> >'wkendz 32' <wkendz32@...> >CC: " 'low dose naltrexone ' " ><low dose naltrexone > >Subject: RE: [low dose naltrexone] LDN Prescription >Date: Thu, 1 May 2003 08:24:00 -0400 > >I also am trying to taking more supplements and trying to eat less fat, >less >red meat, less foods with white flour and less sugar. IT IS SO HARD >sometimes! What is methylcobalamin? Is this a perscription drug or >something that I could get from a health food store? > >-----Original Message----- >From: wkendz 32 [mailto:wkendz32@...] >Sent: Thursday, May 01, 2003 7:25 AM >philh@... >Cc: low dose naltrexone >Subject: RE: [low dose naltrexone] LDN Prescription > > >Great news , that you are doing so well. I think the supplement >thing > >is important too cuz while the body is in the repair faze after an attack, >it needs all the help it can get to help get the body repaired. That's the >way I've always looked at it. I take a lot of supplements...probably too >many really. Do you take methylcobalamin? As far as your histamine sample. >Try again. No reason why you should not have gotten it yet. You can ask >goodshape on the site bulletin board and see what is going on. I agree >about > >the correlation between the histamine and bee venom therapy. > >Connie, great to hear that you are just feeling better. If nothing else >that > >is a great benefit for sure. Joyce > > > > > > > >From: " G. Harding " <philh@...> > > " CK Connie King (1452) " <connie.king@...> > >CC: " 'wkendz 32' " <wkendz32@...>, > ><low dose naltrexone > > >Subject: RE: [low dose naltrexone] LDN Prescription > >Date: Wed, 30 Apr 2003 15:53:25 -0400 (EDT) > > > >Just to chime in, I feel great! I exercise and take supplements and LDN > >and I feel absolutely healthy/great until I have to walk, then I am > >reminded I have a disease (it's like a guest who refuses to leave). > >When I first checked into LDN, some recommended the Histamine patch for > >symptom reduction ( I still haven't received my promised free sample) > > http://www.histamineangel.com <http://www.histamineangel.com> but maybe >that's why bee venom works as well > >(histamines). > > > >On Wed, 30 Apr 2003, CK Connie King (1452) wrote: > > > > > Joyce, > > > > > > I agree that we have to keep in mind that LDN is meant to stop the > > > progression of MS. After 4 weeks on LDN, I haven't seen a major > >change > > > although I seem to just feel better which is a tremendous benefit even > >if > > > I'm still using a walker to get around. It's just that I know that > >some > > > have seen improvement, so I had HIGH hopes that I would see some of >the > >same > > > improvements. But, if LDN stops the progression and at the same time > >isn't > > > harming other parts of our body like some of the other drugs do . . > >YEAH! > > > I'm happy for that! > > > > > > -----Original Message----- > > > From: wkendz 32 [mailto:wkendz32@...] > > > Sent: Wednesday, April 30, 2003 8:22 AM > > > philh@... > > > Cc: low dose naltrexone > > > Subject: Re: [low dose naltrexone] LDN Prescription > > > > > > > > > Hi , > > > Good luck on your journey with the LDN. I just get a bit puzzled by > >comments > > > > > > that people always make about how they don't see any improvement. I'm > > > confused cuz, the way I understand it, LDN is meant to stop >progression > > > rather then to make a hugh difference in symptoms. I think it's > >important to > > > > > > stress this, only because someone might take it with the expectation > >that > > > somehow they will feel some kind of improvement. If they don't see >any, > >they > > > > > > might figure it is not working for them and stop it. I feel that would > >be > > > the wrong thing to do cuz it is supposed to halt the progression of >any > > > further damage and is not touted for helping to improve previous >damage. > > > Just thought I'd mention this for anyone listening. I really do wish >all > > >an > > > exciting journey with this path we are all on. It really is a pretty > >brave > > > thing for all of us to do here and I choose to look at it as an > >adventure > > > that we are all embarking on. Here's to it paying off...*S*. Joyce. > > > > > > > > > > > > > > > > > > > > > >From: " G. Harding " <philh@...> > > > >blueswede06 <blueswede06@...> > > > >CC: low dose naltrexone > > > >Subject: Re: [low dose naltrexone] LDN Prescription > > > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > > > > > > > >I too, was given the prescript for LDN from Dr. Sullivan. The test he > >has > > > >us (I presume) taking is a Heavy Metal Toxicity test -- especially >for > > > >mercury, as 80% of the " MS " patients he sees (he regards all diseases > >of > > > >the immune system to be immune-deficiency rather than immune >under/over > > > >activity) have mercury toxicity. I asked him what the source could be > >as I > > > >never eat fish (I'm allergic) and he said " amalgams - as in dental > > > >fillings " . So, I will be taking the test to see if there is Hg > > > >toxicity. I started on LDN 5 days ago and so far I haven't seen > >progress, > > > >but I am being patient; I was told to give it a couple months. I'm >also > > > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. > > > >My only symptom is balance problems so I feel very lucky. I wish you > >much > > > >luck, Guy. Please keep us informed with your progress as I will. > > > >Phil > > > > > > > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > > > > > > > Today I had my telephone conference with Dr. Sullivan. At the > > > > > conclusion, he agreed to write a prescription for LDN. I am very > > > > > exited about this. My neuro still wants to discuss ABCs, but >won't > > > > > discuss or consider any other treatments. I should have the LDN >by > > > > > Thursday afternoon. Dr. Sullivan also recommended several tests I > > > > > should have run on me, that my neuro and GP have never mentioned. > > > > > I will post my experiences with the LDN. Currenlty, I suffer > > > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > > > > left shoulder and arm-constant, and recurring pain in my left >ankle > > > > > and wrist. I have had much trouble sleeping for about 6-7 months > > > > > now, also. I am currently on 100mg. of neurontin, 4 times a day >for > > > > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > > > > sore, I cannot use it. This is my baseline, I will communicate >any > > > > > changes after I start the LDN. If any of this information helps > > > > > someone else out, this will be time well spent. I am very, very > > > > > fortunate as my symptoms and their effects are evidently very >minor, > > > > > in comparison to what they could be. Best wishes to my fellow >MSers, > > > > > together we will hopefully beat this thing. > > > > > Guy > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Yes Connie. It is off the shelf and I'm really not sure where you can buy it. I've just been getting mine from the Life Extension Foundation. They sell just about anything. I tend to get my more unusual things from them, including a great one a day, which incidentally has so much in it, it is to be taken as 9 a day...lol. I'm sure you could get the methylcobalamin at any vitamin shop that carries lots of unusual items?? Anyone else have knowledge about where they get their methylcobalamin?? You certainly do not need a doctors prescription for it. Joyce. >From: " CK Connie King (1452) " <Connie.King@...> >'wkendz 32' <wkendz32@...> >Subject: RE: [low dose naltrexone] LDN Prescription >Date: Fri, 2 May 2003 16:32:39 -0400 > >Thanks so much for the information. I see that the B12 I am now taking is >in the cyanocobalamin form. This is " off the shelf " B12 (sublingual >formula). How would I get the methylcobalamin form of B12? Is this >something that's also " off the shelf " and I just have to find a place that >sells it? > >-----Original Message----- >From: wkendz 32 [mailto:wkendz32@...] >Sent: Thursday, May 01, 2003 1:25 PM >connie.king@... >Cc: low dose naltrexone >Subject: RE: [low dose naltrexone] LDN Prescription > > >Hi there Connie, >I copied this from the lef.org site. Hope it answers your question about >what methylcobalamin is. I've been taking it sublingually for years. > >Many elderly people suffering from neurological impairment find that B12 >supplementation greatly improves their cognitive function. Published >studies > >show that vitamin B12 in supplement form is absorbed better by elderly >people than vitamin B12 that is bound to food. Vitamin B12 is only found in >animal source foods and is often deficient in vegetarian diets. > >Japanese scientists have identified a form of vitamin B12 that protects >against neurological disease and aging by a unique mechanism that differs >from current therapies. Some of the diseases that may be prevented or >treated by this natural vitamin therapy include Parkinson's disease, >peripheral neuropathies, Alzheimer's disease, muscular dystrophy, and >neurological aging. Americans have immediate access to thisvitamin B12 >analog and unlike prescription drugs, this natural therapy costs very >little > >and is free of side effects. > >Vitamin B12 is a general term used to define a group of essential >biological > >compounds known as " cobalamins. " The cobalamins are structurally related to >hemoglobin in the blood, and a deficiency of vitamin B12 can produce an >anemic state in the body. Conventional doctors' primary concern with >maintaining adequate cobalamin status is to protect against anemia. Over >the > >last ten years, however, a number of central and peripheral neurological >disease states have been related to a deficiency of a specific cobalamin. >The most common form of vitamin B12 is " cyanocobalamin. " While >cyanocobalamin works well to prevent anemia, it is the " methylcobalamin " >form that is required to protect against neurological disease and aging. >The > >liver naturally converts a small amount of cyanocobalamin into >methylcobalamin, but to correct neurological defects and protect against >aging, larger amounts of methylcobalamin are necessary. Published studies >show that high doses of methylcobalamin are needed to regenerate neurons >and > >the myelin sheath that protects axons and peripheral nerves. >Animal studies have shown that high doses of methylcobalamin are effective >in neuronal regeneration. There is no known toxicity at these doses. >Hope this helps...Joyce. > > > > > > > > > >From: " CK Connie King (1452) " <connie.king@...> > >'wkendz 32' <wkendz32@...> > >CC: " 'low dose naltrexone ' " > ><low dose naltrexone > > >Subject: RE: [low dose naltrexone] LDN Prescription > >Date: Thu, 1 May 2003 08:24:00 -0400 > > > >I also am trying to taking more supplements and trying to eat less fat, > >less > >red meat, less foods with white flour and less sugar. IT IS SO HARD > >sometimes! What is methylcobalamin? Is this a perscription drug or > >something that I could get from a health food store? > > > >-----Original Message----- > >From: wkendz 32 [mailto:wkendz32@...] > >Sent: Thursday, May 01, 2003 7:25 AM > >philh@... > >Cc: low dose naltrexone > >Subject: RE: [low dose naltrexone] LDN Prescription > > > > > >Great news , that you are doing so well. I think the supplement > >thing > > > >is important too cuz while the body is in the repair faze after an >attack, > >it needs all the help it can get to help get the body repaired. That's >the > >way I've always looked at it. I take a lot of supplements...probably too > >many really. Do you take methylcobalamin? As far as your histamine >sample. > >Try again. No reason why you should not have gotten it yet. You can ask > >goodshape on the site bulletin board and see what is going on. I agree > >about > > > >the correlation between the histamine and bee venom therapy. > > > >Connie, great to hear that you are just feeling better. If nothing else > >that > > > >is a great benefit for sure. Joyce > > > > > > > > > > > > > > >From: " G. Harding " <philh@...> > > > " CK Connie King (1452) " <connie.king@...> > > >CC: " 'wkendz 32' " <wkendz32@...>, > > ><low dose naltrexone > > > >Subject: RE: [low dose naltrexone] LDN Prescription > > >Date: Wed, 30 Apr 2003 15:53:25 -0400 (EDT) > > > > > >Just to chime in, I feel great! I exercise and take supplements and LDN > > >and I feel absolutely healthy/great until I have to walk, then I am > > >reminded I have a disease (it's like a guest who refuses to leave). > > >When I first checked into LDN, some recommended the Histamine patch for > > >symptom reduction ( I still haven't received my promised free sample) > > > http://www.histamineangel.com <http://www.histamineangel.com> but >maybe > >that's why bee venom works as well > > >(histamines). > > > > > >On Wed, 30 Apr 2003, CK Connie King (1452) wrote: > > > > > > > Joyce, > > > > > > > > I agree that we have to keep in mind that LDN is meant to stop the > > > > progression of MS. After 4 weeks on LDN, I haven't seen a major > > >change > > > > although I seem to just feel better which is a tremendous benefit >even > > >if > > > > I'm still using a walker to get around. It's just that I know >that > > >some > > > > have seen improvement, so I had HIGH hopes that I would see some of > >the > > >same > > > > improvements. But, if LDN stops the progression and at the same >time > > >isn't > > > > harming other parts of our body like some of the other drugs do . . > > >YEAH! > > > > I'm happy for that! > > > > > > > > -----Original Message----- > > > > From: wkendz 32 [mailto:wkendz32@...] > > > > Sent: Wednesday, April 30, 2003 8:22 AM > > > > philh@... > > > > Cc: low dose naltrexone > > > > Subject: Re: [low dose naltrexone] LDN Prescription > > > > > > > > > > > > Hi , > > > > Good luck on your journey with the LDN. I just get a bit puzzled by > > >comments > > > > > > > > that people always make about how they don't see any improvement. >I'm > > > > confused cuz, the way I understand it, LDN is meant to stop > >progression > > > > rather then to make a hugh difference in symptoms. I think it's > > >important to > > > > > > > > stress this, only because someone might take it with the expectation > > >that > > > > somehow they will feel some kind of improvement. If they don't see > >any, > > >they > > > > > > > > might figure it is not working for them and stop it. I feel that >would > > >be > > > > the wrong thing to do cuz it is supposed to halt the progression of > >any > > > > further damage and is not touted for helping to improve previous > >damage. > > > > Just thought I'd mention this for anyone listening. I really do wish > >all > > > > >an > > > > exciting journey with this path we are all on. It really is a pretty > > >brave > > > > thing for all of us to do here and I choose to look at it as an > > >adventure > > > > that we are all embarking on. Here's to it paying off...*S*. Joyce. > > > > > > > > > > > > > > > > > > > > > > > > > > > > >From: " G. Harding " <philh@...> > > > > >blueswede06 <blueswede06@...> > > > > >CC: low dose naltrexone > > > > >Subject: Re: [low dose naltrexone] LDN Prescription > > > > >Date: Wed, 30 Apr 2003 07:18:47 -0400 (EDT) > > > > > > > > > >I too, was given the prescript for LDN from Dr. Sullivan. The test >he > > >has > > > > >us (I presume) taking is a Heavy Metal Toxicity test -- especially > >for > > > > >mercury, as 80% of the " MS " patients he sees (he regards all >diseases > > >of > > > > >the immune system to be immune-deficiency rather than immune > >under/over > > > > >activity) have mercury toxicity. I asked him what the source could >be > > >as I > > > > >never eat fish (I'm allergic) and he said " amalgams - as in dental > > > > >fillings " . So, I will be taking the test to see if there is Hg > > > > >toxicity. I started on LDN 5 days ago and so far I haven't seen > > >progress, > > > > >but I am being patient; I was told to give it a couple months. I'm > >also > > > > >doing supplements (vitamins), oils, and Calcium EAP 1g/day orally. > > > > >My only symptom is balance problems so I feel very lucky. I wish >you > > >much > > > > >luck, Guy. Please keep us informed with your progress as I will. > > > > >Phil > > > > > > > > > >On Wed, 30 Apr 2003, blueswede06 wrote: > > > > > > > > > > > Today I had my telephone conference with Dr. Sullivan. At the > > > > > > conclusion, he agreed to write a prescription for LDN. I am >very > > > > > > exited about this. My neuro still wants to discuss ABCs, but > >won't > > > > > > discuss or consider any other treatments. I should have the LDN > >by > > > > > > Thursday afternoon. Dr. Sullivan also recommended several tests >I > > > > > > should have run on me, that my neuro and GP have never >mentioned. > > > > > > I will post my experiences with the LDN. Currenlty, I >suffer > > > > > > from EXTREME fatigue, temperature sensitive, a lot of pain in my > > > > > > left shoulder and arm-constant, and recurring pain in my left > >ankle > > > > > > and wrist. I have had much trouble sleeping for about 6-7 >months > > > > > > now, also. I am currently on 100mg. of neurontin, 4 times a day > >for > > > > > > the pain, and muscle spasms. Occaisionally, my left wrist is so > > > > > > sore, I cannot use it. This is my baseline, I will communicate > >any > > > > > > changes after I start the LDN. If any of this information helps > > > > > > someone else out, this will be time well spent. I am very, very > > > > > > fortunate as my symptoms and their effects are evidently very > >minor, > > > > > > in comparison to what they could be. Best wishes to my fellow > >MSers, > > > > > > together we will hopefully beat this thing. > > > > > > Guy > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 just google " methylcobalamin " -- there are dozens of pages of info. and sources for the stuff. like everything else, do comparison shopping. here are some credible-looking links: https://www.immunesupport.com/shop/product.cfm?Product__Code=P278 & CFID=5208297 & C\ FTOKEN=43870732 http://www.naturalhealthconsult.com/Monographs/Methylcobalamin.html http://www.nutritionaltest.com/methyl.html http://www.integratedhealth.com/infoabstract/cobalab.html (study abstracts) http://www.integratedhealth.com/hpdspec/cobal.html (order) etc. etc.... ariela From: " wkendz 32 " <wkendz32@...> Connie.King@... Subject: RE: [low dose naltrexone] LDN Prescription > Yes Connie. It is off the shelf and I'm really not sure where you can buy > it. I've just been getting mine from the Life Extension Foundation. They > sell just about anything. I tend to get my more unusual things from them, > including a great one a day, which incidentally has so much in it, it is to > be taken as 9 a day...lol. I'm sure you could get the methylcobalamin at any > vitamin shop that carries lots of unusual items?? Anyone else have knowledge > about where they get their methylcobalamin?? You certainly do not need a > doctors prescription for it. Joyce. > >From: " CK Connie King (1452) " <Connie.King@...> > >'wkendz 32' <wkendz32@...> > >Subject: RE: [low dose naltrexone] LDN Prescription > >Date: Fri, 2 May 2003 16:32:39 -0400 > > > >Thanks so much for the information. I see that the B12 I am now taking is > >in the cyanocobalamin form. This is " off the shelf " B12 (sublingual > >formula). How would I get the methylcobalamin form of B12? Is this > >something that's also " off the shelf " and I just have to find a place that > >sells it? > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.