Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Not to throw cold water on that protocol because I'm sure its good and I'm sure its helpful but it sounds pretty similar, with the exception of the nebulized glutathione, to what Dr. Cheney reccomends and in fact what just about every knowledgeable CFS physician that I have seen reccomends; lot of antioxidants and supporting substances.. I've taken almost everything on that list. I'm sure its more comprehensive than most in it antioxidant supplementation but I dont see it as paradigm shift or anything else. Am I wrong in this? kattemayo <kattemayo@...> wrote: Rich, Thanks for the report. Dr. Cheney's protocol for me includes quite a few of those, and I've been interested in the Key compounds. I'd also be interested in written/website material or video of the Conference, if they're available. Will you find out? Dr. Cheney said even if Pall does not have whole overview of CFS, his work is the one that should be funded. I'm really glad you're attending the Conference! Thanks, Katrina > > Hi, all. > > Yesterday I attended the first day of the Multiple Chemical > Sensitivities Case Definition Workshop. I'm planning to go again > tomorrow, and will try to post a more complete report on it after that. > > But I do want to report on Dr. Grace Ziem's experience with her MCS > protocol. She wasn't there, but both Prof. Pall and Jim > Seymour of Key Pharmacy in Kent, WA were there, and both gave talks. > > As readers are probably well aware, there is a lot of overlap between > people who have CFS and those who have MCS, and as you also may know, > Marty Pall has a theory called the NO-ONOO theory that he believes > applies to CFS, FM, MCS and PTSD. Grace Ziem has incorporated Marty's > thinking into her neural sensitization theory for MCS, and she has > developed a protocol for MCS, using Marty's recommendations. Key > Pharmacy compounds this protocol, and it is available by prescription > from them. > > The big news from Jim was that whereas Grace Ziem used to have a 3- > year backlog of patients, this is now dropping, and the reason it's > dropping is not that they have given up on her, but that her patients > are getting well! I questioned him at lunch about whether he meant > that they were cured or that they were feeling healthy but continuing > on maintenance treatment, and he said it was the latter. I told him > and Marty about Amy Yasko's program, of which they were not aware, and > they both expressed a lot of interest. > > Here's what I find interesting: More and more clinicians are homing > in on the same treatments, but they are getting there coming from > different directions, and have different explanations for why these > treatments work. Of course, the body doesn't care how we explain > things. If we give it the right stuff, it responds, whatever our > rationale! > > Take a look at what's in Dr. Ziem's protocol: > > By nebulizer: reduced glutathione, hydroxocobalamin, folic acid. > > By nasal spray: reduced glutathione and hydroxocobalamin, when needed. > > Orally: betaine (trimethylglycine), taurine, P-5-P, magnesium, folic > acid, ascorbic acid, selenium, coenzyme Q-10, riboflavin-5-phosphate, > zinc, copper, manganese, gingko biloba extract, silymarin (Milk > Thistle extract), bilberry extract, cranberry extract, lycopene, beta- > carotene, lutein, acetyl-L-carnitine, mixed tocopherols, and alpha > lipoic acid. > > Don't quite a few of those sound very familiar to those of you on the > Yasko program? How about to those of you who are getting the > injections and supplements that Dr. Enlander has developed? Very > interesting. > > I continue to believe that Dr. Yasko is applying these treatments in a > more skillful manner, which is tailored to the particular genetic > makeup of the individual. The others are still doing a one-size-fits- > all approach, which will take care of the majority and is cheaper and > more efficient, but I don't think their approaches will work on the > tougher cases, in particular those with the CBS upregulations. > > This is really an interesting process to watch! I told Marty (partly > because I've known him for quite a while and he takes himself so > seriously that I enjoy rattling his cage a little (:-) It's mean, I > know, and God probably wouldn't approve!) that he has the right > treatments for the wrong reasons! Of course, I'm not sure of that, > but the genetic testing combined with other data on the cases we are > tracking here is pretty convincing to me, and Marty really doesn't > have measured data that directly proves his model is actually > representing what's going on in CFS. He cites the fact that the > treatments based on his recommendations are working, but that really > doesn't prove his theory is applicable, because he can't really be > sure that the treatments are working the way he thinks they are. So > it's a lot of fun. But the good thing is that whatever we scientists > think is the explanation, people really are being helped, and that's > very exciting. > > Rich > --------------------------------- See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 That is all very familiar territory. Are there case studies, and people coming forward with success stories of recovery or at least rising up toward what we are wanting? Just wondering. cort johnson <cortttt@...> wrote: Not to throw cold water on that protocol because I'm sure its good and I'm sure its helpful but it sounds pretty similar, with the exception of the nebulized glutathione, to what Dr. Cheney reccomends and in fact what just about every knowledgeable CFS physician that I have seen reccomends; lot of antioxidants and supporting substances.. I've taken almost everything on that list. I'm sure its more comprehensive than most in it antioxidant supplementation but I dont see it as paradigm shift or anything else. Am I wrong in this? kattemayo <kattemayo@...> wrote: Rich, Thanks for the report. Dr. Cheney's protocol for me includes quite a few of those, and I've been interested in the Key compounds. I'd also be interested in written/website material or video of the Conference, if they're available. Will you find out? Dr. Cheney said even if Pall does not have whole overview of CFS, his work is the one that should be funded. I'm really glad you're attending the Conference! Thanks, Katrina > > Hi, all. > > Yesterday I attended the first day of the Multiple Chemical > Sensitivities Case Definition Workshop. I'm planning to go again > tomorrow, and will try to post a more complete report on it after that. > > But I do want to report on Dr. Grace Ziem's experience with her MCS > protocol. She wasn't there, but both Prof. Pall and Jim > Seymour of Key Pharmacy in Kent, WA were there, and both gave talks. > > As readers are probably well aware, there is a lot of overlap between > people who have CFS and those who have MCS, and as you also may know, > Marty Pall has a theory called the NO-ONOO theory that he believes > applies to CFS, FM, MCS and PTSD. Grace Ziem has incorporated Marty's > thinking into her neural sensitization theory for MCS, and she has > developed a protocol for MCS, using Marty's recommendations. Key > Pharmacy compounds this protocol, and it is available by prescription > from them. > > The big news from Jim was that whereas Grace Ziem used to have a 3- > year backlog of patients, this is now dropping, and the reason it's > dropping is not that they have given up on her, but that her patients > are getting well! I questioned him at lunch about whether he meant > that they were cured or that they were feeling healthy but continuing > on maintenance treatment, and he said it was the latter. I told him > and Marty about Amy Yasko's program, of which they were not aware, and > they both expressed a lot of interest. > > Here's what I find interesting: More and more clinicians are homing > in on the same treatments, but they are getting there coming from > different directions, and have different explanations for why these > treatments work. Of course, the body doesn't care how we explain > things. If we give it the right stuff, it responds, whatever our > rationale! > > Take a look at what's in Dr. Ziem's protocol: > > By nebulizer: reduced glutathione, hydroxocobalamin, folic acid. > > By nasal spray: reduced glutathione and hydroxocobalamin, when needed. > > Orally: betaine (trimethylglycine), taurine, P-5-P, magnesium, folic > acid, ascorbic acid, selenium, coenzyme Q-10, riboflavin-5-phosphate, > zinc, copper, manganese, gingko biloba extract, silymarin (Milk > Thistle extract), bilberry extract, cranberry extract, lycopene, beta- > carotene, lutein, acetyl-L-carnitine, mixed tocopherols, and alpha > lipoic acid. > > Don't quite a few of those sound very familiar to those of you on the > Yasko program? How about to those of you who are getting the > injections and supplements that Dr. Enlander has developed? Very > interesting. > > I continue to believe that Dr. Yasko is applying these treatments in a > more skillful manner, which is tailored to the particular genetic > makeup of the individual. The others are still doing a one-size-fits- > all approach, which will take care of the majority and is cheaper and > more efficient, but I don't think their approaches will work on the > tougher cases, in particular those with the CBS upregulations. > > This is really an interesting process to watch! I told Marty (partly > because I've known him for quite a while and he takes himself so > seriously that I enjoy rattling his cage a little (:-) It's mean, I > know, and God probably wouldn't approve!) that he has the right > treatments for the wrong reasons! Of course, I'm not sure of that, > but the genetic testing combined with other data on the cases we are > tracking here is pretty convincing to me, and Marty really doesn't > have measured data that directly proves his model is actually > representing what's going on in CFS. He cites the fact that the > treatments based on his recommendations are working, but that really > doesn't prove his theory is applicable, because he can't really be > sure that the treatments are working the way he thinks they are. So > it's a lot of fun. But the good thing is that whatever we scientists > think is the explanation, people really are being helped, and that's > very exciting. > > Rich > --------------------------------- See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Hi, Cort and Edy. Cort--The nebulized glutathione and nebulized hydroxocobalamin do seem to be important components of the Ziem-Pall MCS protocol. Bear in mind that this is a treatment for MCS, which often has a major respiratory component. Edy--Jim Seymour reported that he has tracked 40 patients over the past two and a half years. He did describe the experiences of some patients. One was a 50-yr old woman who had worked in a toxic office building, next to a copying machine. She crashed in 2001 with memory problems, burning eyes, and migraines. In July 2005, Dr. Ziem started her on 60 mg per ml nebulized glutathione and also glutathione nasal spray of the same strength. She also added a drop each of hydroxocobalamin and folic acid at 5 mg each per drop to the glutathione nebulizer solution. In a few months the woman's symptoms became controllable, and the duration of her symptoms became greatly reduced. In particular, she no longer had uncontrollable 4-day migraine headaches. A mother with three children who were all getting straight As had one daughter who suffered from being exposed to mold toxins. She could no longer concentrate and had to drop out of school earlier this year. On May 30, 2006 she started using nebulized glutathione at a low dose and titrated up the dose. She was able to start summer school, and is currently getting As again. He briefly mentioned some others as well. He said that people have been able to stop migraine headaches in 20 or 30 minutes using the nebulized glutathione or nebulized hydroxocobalamin. Patients often cannot tolerate even 30 mg of glutathione at first, so they start with one drop of the glutathione solution in a sodium chloride nebulizer solution at first, and and then increase by one drop per day. If people are driving, they use the nasal spray rather than the nebulizer. Jim first learned about the benefits of nebulized glutathione 10 years ago when his own reactive airway syndrome was aggravated by operating a wood-burning stove in his house. He found that his FEV- 1, which is a measure of breathing, increased as much from using glutathione as it did from albuterol, and it didn't have the side effects of shakiness and heart rate increase. So he was already producing nebulized glutathione when he met Grace Ziem and Marty Pall, and they decided to try it for MCS. Rich Not to throw cold water on that protocol because I'm sure its good and I'm sure its helpful but it sounds pretty similar, with the exception of the nebulized glutathione, to what Dr. Cheney reccomends and in fact what just about every knowledgeable CFS physician that I have seen reccomends; lot of antioxidants and supporting substances.. I've taken almost everything on that list. > > I'm sure its more comprehensive than most in it antioxidant supplementation but I dont see it as paradigm shift or anything else. Am I wrong in this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hello. I am a new member of this board and will be starting Jim Seymour's MCS protocol tomorrow. I have been nebulizing glutathione for several years, so that part of the protocol is not new for me. I anxiously await my experiences with the full treatment. I will keep you posted as I progress. In fact, I plan on keeping a journal for my MD. Lu Not to throw cold water > on that protocol because I'm sure its good and I'm sure its helpful > but it sounds pretty similar, with the exception of the nebulized > glutathione, to what Dr. Cheney reccomends and in fact what just > about every knowledgeable CFS physician that I have seen reccomends; > lot of antioxidants and supporting substances.. I've taken almost > everything on that list. > > > > I'm sure its more comprehensive than most in it antioxidant > supplementation but I dont see it as paradigm shift or anything > else. Am I wrong in this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi, Lu. Welcome to the group and thank you for posting your treatment plans. I also look forward to hearing how things go for you on the Ziem-Pall-Seymour protocol. Rich Not to throw cold water > > on that protocol because I'm sure its good and I'm sure its helpful > > but it sounds pretty similar, with the exception of the nebulized > > glutathione, to what Dr. Cheney reccomends and in fact what just > > about every knowledgeable CFS physician that I have seen reccomends; > > lot of antioxidants and supporting substances.. I've taken almost > > everything on that list. > > > > > > I'm sure its more comprehensive than most in it antioxidant > > supplementation but I dont see it as paradigm shift or anything > > else. Am I wrong in this? > > > Quote Link to comment Share on other sites More sharing options...
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