Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Rich, I feel like I should put in two cents about this. I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 If anyone finds out what type of testing they are going to do, I would be interested in knowing. I would be willing to travel to participate but need something more than a bottle of supplements. I have taken the ingredients separately and yes, they are helpful but I don't need to spend the money and effort to go to SF for that. If I find out, I will let people know. Marti > > > Rich, > > I feel like I should put in two cents about this. > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > Peggy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hi, Peggy. Thanks for the information. I was a little leery about the Ritalin when Dr. Kaiser first told me about it, but he says that a low dosage of it, together with the Immune Support supplement work together and give very good results, so we'll see. He's well aware of the sensitivity to drugs that PWMEs have, and that's why the low dosage. With regard to caffeine, in fact he does use this in his over the counter K-PAX Energy supplement, and he says that it performs a similar function in that supplement as Ritalin will in the combination treatment in this clinical study. I think that part of the rationale for including Ritalin is that he hopes that a pharmaceutical company will become interested in a treatment that shows promise for ME/CFS, but that also includes a patentable drug. If the combination produces recovery, the patient could go to a maintenance dosage of the nutritional supplement and drop the drug. This would be a way to try to get nutritional supplements into use by the mainstream physicians. Dr. Kaiser is an integrative physician and believes that both the drugs and the nutrients can be beneficial if used together in the right way. Best regards, Rich > > > Rich, > > I feel like I should put in two cents about this. > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > Peggy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2012 Report Share Posted February 10, 2012 Hi, Marti. In this preliminary clinical study, they are planning to use visual analog scale rating of symptoms by the patients, together with a standardized questionnaire. If the results are promising, they are planning a more serious clinical trial, and I think it will have objective outcome measures, though I haven't seen the plan for it. Best regards, Rich > > > > > > Rich, > > > > I feel like I should put in two cents about this. > > > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > > > Peggy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2012 Report Share Posted February 11, 2012 this seems similar to teitelbaum's using supplements and a low dose of stimulant as well. it prompted me to try provigil and strattera and mega doses of b vitamins. i was sick to my stomach, bleeding heavily and felt like i was on mars. ribose made me hypoglycemic. disappointed, hoping something would work and let me function at a higher level. > > > > > > Rich, > > > > I feel like I should put in two cents about this. > > > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > > > Peggy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2012 Report Share Posted February 11, 2012 Hi, Donna. I'm very sorry that you had this experience. I wonder if you have considered a methylation-type treatment. If you would like more information on testing for and treating the partial methylation cycle block in ME/CFS, please let me know. Rich > > > > > > > > > Rich, > > > > > > I feel like I should put in two cents about this. > > > > > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > > > > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > > > > > Peggy > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2012 Report Share Posted February 12, 2012 Rich, what is the prescription level of Ritalin? God Bless, Sara > > > > > > > > > > > > Rich, > > > > > > > > I feel like I should put in two cents about this. > > > > > > > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > > > > > > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > > > > > > > Peggy > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2012 Report Share Posted February 12, 2012 yes > > > > > > > > > > > > Rich, > > > > > > > > I feel like I should put in two cents about this. > > > > > > > > I saw Dr. Kaiser in SF, many years ago when I first came down with sudden-onset ME/CFS. At that point, he was primarily treating AIDS patients. I have read a lot of his work since then, and he has admitted that -- which nutritional interventions and other drugs can stave off the progression from HIV to AIDS for some period of time -- antiretroviral drugs are always needed (but he combines these with all of his nutritional interventions as well). I think the same will prove true for ME/CFS, frankly -- while I did feel even at the time (and this was pre-HAART era, so at that time he simply didn't have the variety of drugs needed to successfully treat AIDS) that many of his supplement choices were particularly high-quality -- and actually think K-PAX is a good product -- I don't think these are going to be a cure-all, based on my own experience. I was taking K-PAX daily for awhile, and did find it helpful -- I think it's worth trying, and is one of the best micronutrient formulas out there -- but the improvement in my case was not huge. I still take it, just not daily, and still like it and consider it valuable. I do think that Kaiser, having treated so many AIDS patients, could be a valuable asset to the ME/CFS community if he would integrate the prospect of a retrovirus into his thinking (I personally still think a retroviral cause or co-cause will be found, despite what has happened with XMRV). > > > > > > > > I'm definitely intrigued that he is using Ritalin as well though, due to its potential to increase brain plasticity. I think the combinaion of the two is an intriguing one. I am curious what you think of the Ritalin piece of his treatment (or whether something else, i.e. Provigil or simply coffee, might be effective as well). If he's looking at ME/CFS from the standpoint of neuroplasticity, however, HIV does seem to impair brain plasticity, and I suspect ME/CFS could do so as well -- making brain plasticity-based approaches ineffective unless something kills the underlying pathogen (if there is one infecting the brain, as in HIV/AIDS) or does something to artificially increase brain plasticity (mainly: stimulants like Ritalin). I know Dr. Cheney has written that stimulants could be neurotoxic in ME/CFS, but I think neuroplasticity research suggests they could actually be helpful for us on this front, so I'm really curious about the rationale behind his study. > > > > > > > > Peggy > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2012 Report Share Posted February 13, 2012 Any dose of Ritalin requires a prescription as it is a controlled substance. Ritalin is actually a CII, the most tightly controlled of the controlled substances that is available for medical use. CI 100% illegal CII Strictly controlled, no refills, requires paper script or escript CIII Controlled, max 5 refills/6 months, phone and fax orders allowed CIV Controlled, max 5 refills/6 months, phone and fax orders allowed CV Weakly controlled Rx Requires prescription, unlimited refills over 12 months Steve M in PA On Sun, Feb 12, 2012 at 9:37 AM, grammie2304 <sarawilliams.williams@...> wrote: Rich, what is the prescription level of Ritalin? God Bless, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Am well aware of prescription needs for Ritalin----------my 74 year old husband has been on it for 12 years for ADD. Question is " what is the low dose " ?? God Bless, Sara > Rich, what is the prescription level of Ritalin? > God Bless, > Sara > Quote Link to comment Share on other sites More sharing options...
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