Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 >> There are too many medical experts saying that inflammation is at > the heart of many chronic illnesses. > Bob Hi Bob, Dr. Moskowitz also uses ARB's for inflammation, but he does not use Benicar ? When I asked Dr. Marhsall on the MP group list this a few weeks ago , I got no reply from him. Immunesupport.com has an article by Dr. Moskowitz. Al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Hi, Bob. > Rich, I also believe it is on the cutting edge but do you think it > is even POSSIBLE that TM could have all the answers on such complex > diseases? Bob, I think it's unlikely that anyone has all the answers about anything, unless we're including God in the discussion. > Rich, I have heard that his protocol hasn't worked for that many > sarc patients. Heresay I know. I don't believe everything I hear or > read. Well, I think my sources of information about that are the same as yours, so you will have to make your own judgment. I think you're right in not believing everything you hear or read. It's always good to run things through your own truth filter before you accept them as truth. Yes, it hard somedays to have patience but I know that you > feel our pain and is understanding. You are quite a man. That is one > reason I find it hard to understand why you are so sold on a man who > none of us even know? Thanks for thinking so highly of me! I'm not sure that I would characterize myself as being " sold. " I do think that there are some things I can learn from him, so I'm eager to do that. I don't have any illusions about anyone's understanding of these things being perfect, again, unless we are including God in the discussion. > > I hope you will try to understand what Dr. Marshall is up > against. > > Sure, if he turns out to be right about all the diseases he thinks > > will be helped by his protocol, and if he lives long enough, he > will > > get a lot of credit eventually, and in that case, I think he will > > also stand a good chance of getting the Nobel prize in medicine > and > > physiology. > My goodness, are you ready to award him the Nobel Prize for > Medicine? Rich, this man has strange influence. Kind of like the > Pied-Piper. I would not begrudge him fame and fortune if he can do > what he claims. Shouldn't the claims be proven first? If you look back at my statements above, I think you you will see some " if's " in it. I don't have any voice in who gets the Nobel prize. That depends on some folks up in Scandanavia! As I said earlier, I think that we all need to exercise some patience and let some research go on, before we can reach conclusions. Keeping an open mind for a while on this protocol is a good idea, in my opinion. > > If I understand TM correctly, the MP is good for all PWC's. You may > have read Joanne's post yesterday where she said she was on her 38th > day of the MP and was not working. She wanted to know when she > should consider the MP a failure for her and TM told her that it may > take her longer than others (which is true for some) but WHEN do a > PWC realize the MP is not good for his/her subset? TM seems to think > it is good for all PWC's. In the years that I've been following research on these disorders, I've noticed a certain phenomenon occurring over and over. That is that when a person who has one of these disorders is helped by a certain treatment, the person often makes the assumption that it will also help everyone else. I think this is a natural human response. I think it's based on Ockham's Razor. I also think it's admirable that a person who has been helped wants to share it with others who need help. The person often starts out with a lot of enthusiasm, and sometimes others aren't very receptive, because they've been through all this before so many times. I think we should forgive people for making this assumption, and give them some time to find out who will be helped and who will not. After all, eventually one of these treatments might turn out to be the one that will help you! Nothing ventured, nothing gained. I don't have an easy answer for you about how long a trial someone should give a new treatment. I don't think we know enough yet to distinguish between a herxheimer reaction or " healing crisis " that is going to lead to some improvement, and a treatment that just isn't helping, and perhaps is making symptoms worse. You are asking the sixty-four dollar question there. > > My bp never came up. I was dizzy most days. after 6 weks it could be > 75/40 and I would feel horrible. The herxing is what drove me off of > the MP. Benicar didn't help there at all?? I don't know how to advise you, Bob. Maybe waiting a while to see which subset (or subsets) are helped by this protocol would be a good move in your case. > > It is easier to hang in there when you know people like you care and > are trying to figure it out since most of us have cognitive problems. O.K., Bob. I want to help however I can. > > Rich, you never did answer if a PhD has to have signed statements > before giving medical opinions? I don't think that's required under the law in California, Bob. The important things are that a person not represent himself as a licensed physician if he isn't, that he not prescribe drugs himself if he isn't licensed, and that he not tell people to stop taking drugs that a licensed physician has prescribed. My impression of Dr. Marshall is that he works through licensed physicians, and that he refers people back to their doctors when he gives them some advice. As far as I can tell, he's living within the spirit of the law. Like you, I'm not a lawyer, so this is just a layperson's opinion. I probably bend over backward more than I really need to to try to conform to the law, but I do want to be legal and to have people realize that I am trying to operate above board. So I follow the law that pertains to alternative and complementary health care providers in California, even though I don't view myself or advertise myself as such. Since Dr. Marshall is researching a protocol involving pharmaceuticals, I don't think he would fit within the definition of an alternative or complementary health care provider. Also, the MP calls for getting off > of all medication. what do you think about people like me getting > off of my Effexor, Neurontin and klonopin? I can understand TM > wnating trials where patients are on nothing but his protocol but it > seems dangerous to ask depressed and psychotic people to get off > their medication. I think that you should consult with your own licensed physician about that. If you and your physician do not view this as a safe thing for you to do, then you probably should decide not to do it. > > rich, I want TM to be part of finding answers to our illness. It > seems that TM has his mind made up and he does not listen to Tony, > Dr Cheney or anyone. It seems to me that it is arrogant for a > researcher to start treating and illness in which countless > brilliant researchrs have spent 15-20 years researching CFS, then > they read where there ideas are ridiculed. Aren't you the least bit > curious of why Dr Cheney thinks that benicar is NOT the right drug > and may actually cause more inflammation? I don't have $510/hour or > I would call him for a phone consult...lol Well, as you may know, I've made some efforts to try to encourage a conversation between Drs. Marshall and Cheney. I hope it happens, and for all I know, it may have happened already. Neither of these gentlemen work for me! Please bear in mind that honest people can have honest differences of opinion. Sometimes when third parties become involved, people's opinions are not accurately represented, and misunderstandings can result. I think it is best if we encourage the various researchers to communicate with each other directly, and not say or do things that will make this more difficult than it inherently is. It really is in all of our interests for the researchers to get along with each other as well as possible. Competition is fine, and can be very motivating, but I think we really need to avoid personal animosities as much as we can. > > Rich, in closing, I want to be part of the solution and not the > problem. I am post-graduate educated but in business. I am losing > the ability to understand the more complexity of what is being said > about CFS lately. I wished we were talking groceries...lol I think > I asked TM some proper question when I was on the MP list then > people like Suzanne told me to quit running my mouth and let TM get > about his work. Sounds like what Clinton told us when he was being > asked about Lewinsky. I am going to stop posting about TM. It > seems like he should run for president. Being ill 29 years and > trying every protocol around, I would like to see some success > stories before we award TM the Nobel Prize. > > Bob I'm glad you want to be part of the solution, Bob. I feel the same way. I'm sorry if things were said to you that didn't seem to be very helpful. Having a thick skin and the ability to forgive are really important things to cultivate. Remember that when a person who is ill is helped by someone, the ill person has a tendency to become fiercely loyal to that person. That's very understandable, and a very human response. Loyalty is a good quality, but sometimes it gets translated into too much defensiveness, and tends to hurt other people's feelings, who don't understand the reason behind it. We are all vulnerable to that tendency, and I think we need to make allowances for each other. I hope we see lots of success stories, too, including yours. Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 " Also, the MP calls for getting off > of all medication. " Bob, I just want to clarify that it is not said anywhere in the MP instructions that people must get off all medications. It is encouraged that people be on the minimum number of drugs possible, for maximum effectiveness/and or ability to assess progress. There's also a list of certain drugs that are contraindicated with the protocol, but no one says you have to be off all medications. It's statements like this that I feel need to be corrected so that people are not misinformed. This does not mean that I'm defensive or trying to convince anyone to do the protocol. penny > > > Rich, I also believe it is on the cutting edge but do you think it > > is even POSSIBLE that TM could have all the answers on such > complex > > diseases? > > Bob, I think it's unlikely that anyone has all the answers about > anything, unless we're including God in the discussion. > > > > Rich, I have heard that his protocol hasn't worked for that many > > sarc patients. Heresay I know. I don't believe everything I hear > or > > read. > > Well, I think my sources of information about that are the same as > yours, so you will have to make your own judgment. I think you're > right in not believing everything you hear or read. It's always > good to run things through your own truth filter before you accept > them as truth. > > Yes, it hard somedays to have patience but I know that you > > feel our pain and is understanding. You are quite a man. That is > one > > reason I find it hard to understand why you are so sold on a man > who > > none of us even know? > > Thanks for thinking so highly of me! I'm not sure that I would > characterize myself as being " sold. " I do think that there are some > things I can learn from him, so I'm eager to do that. I don't have > any illusions about anyone's understanding of these things being > perfect, again, unless we are including God in the discussion. > > > > I hope you will try to understand what Dr. Marshall is up > > against. > > > Sure, if he turns out to be right about all the diseases he > thinks > > > will be helped by his protocol, and if he lives long enough, he > > will > > > get a lot of credit eventually, and in that case, I think he > will > > > also stand a good chance of getting the Nobel prize in medicine > > and > > > physiology. > > My goodness, are you ready to award him the Nobel Prize for > > Medicine? Rich, this man has strange influence. Kind of like the > > Pied-Piper. I would not begrudge him fame and fortune if he can do > > what he claims. Shouldn't the claims be proven first? > > If you look back at my statements above, I think you you will see > some " if's " in it. I don't have any voice in who gets the Nobel > prize. That depends on some folks up in Scandanavia! As I said > earlier, I think that we all need to exercise some patience and let > some research go on, before we can reach conclusions. Keeping an > open mind for a while on this protocol is a good idea, in my opinion. > > > > > If I understand TM correctly, the MP is good for all PWC's. You > may > > have read Joanne's post yesterday where she said she was on her > 38th > > day of the MP and was not working. She wanted to know when she > > should consider the MP a failure for her and TM told her that it > may > > take her longer than others (which is true for some) but WHEN do a > > PWC realize the MP is not good for his/her subset? TM seems to > think > > it is good for all PWC's. > > In the years that I've been following research on these disorders, > I've noticed a certain phenomenon occurring over and over. That is > that when a person who has one of these disorders is helped by a > certain treatment, the person often makes the assumption that it > will also help everyone else. I think this is a natural human > response. I think it's based on Ockham's Razor. I also think it's > admirable that a person who has been helped wants to share it with > others who need help. The person often starts out with a lot of > enthusiasm, and sometimes others aren't very receptive, because > they've been through all this before so many times. I think we > should forgive people for making this assumption, and give them some > time to find out who will be helped and who will not. After all, > eventually one of these treatments might turn out to be the one that > will help you! Nothing ventured, nothing gained. > > I don't have an easy answer for you about how long a trial someone > should give a new treatment. I don't think we know enough yet to > distinguish between a herxheimer reaction or " healing crisis " that > is going to lead to some improvement, and a treatment that just > isn't helping, and perhaps is making symptoms worse. You are asking > the sixty-four dollar question there. > > > > > My bp never came up. I was dizzy most days. after 6 weks it could > be > > 75/40 and I would feel horrible. The herxing is what drove me off > of > > the MP. Benicar didn't help there at all?? > > I don't know how to advise you, Bob. Maybe waiting a while to see > which subset (or subsets) are helped by this protocol would be a > good move in your case. > > > > > It is easier to hang in there when you know people like you care > and > > are trying to figure it out since most of us have cognitive > problems. > > O.K., Bob. I want to help however I can. > > > > Rich, you never did answer if a PhD has to have signed statements > > before giving medical opinions? > > I don't think that's required under the law in California, Bob. The > important things are that a person not represent himself as a > licensed physician if he isn't, that he not prescribe drugs himself > if he isn't licensed, and that he not tell people to stop taking > drugs that a licensed physician has prescribed. My impression of > Dr. Marshall is that he works through licensed physicians, and that > he refers people back to their doctors when he gives them some > advice. As far as I can tell, he's living within the spirit of the > law. Like you, I'm not a lawyer, so this is just a layperson's > opinion. I probably bend over backward more than I really need to > to try to conform to the law, but I do want to be legal and to have > people realize that I am trying to operate above board. So I follow > the law that pertains to alternative and complementary health care > providers in California, even though I don't view myself or > advertise myself as such. Since Dr. Marshall is researching a > protocol involving pharmaceuticals, I don't think he would fit > within the definition of an alternative or complementary health care > provider. > > Also, the MP calls for getting off > > of all medication. what do you think about people like me getting > > off of my Effexor, Neurontin and klonopin? I can understand TM > > wnating trials where patients are on nothing but his protocol but > it > > seems dangerous to ask depressed and psychotic people to get off > > their medication. > > I think that you should consult with your own licensed physician > about that. If you and your physician do not view this as a safe > thing for you to do, then you probably should decide not to do it. > > > > > rich, I want TM to be part of finding answers to our illness. It > > seems that TM has his mind made up and he does not listen to Tony, > > Dr Cheney or anyone. It seems to me that it is arrogant for a > > researcher to start treating and illness in which countless > > brilliant researchrs have spent 15-20 years researching CFS, then > > they read where there ideas are ridiculed. Aren't you the least > bit > > curious of why Dr Cheney thinks that benicar is NOT the right drug > > and may actually cause more inflammation? I don't have $510/hour > or > > I would call him for a phone consult...lol > > Well, as you may know, I've made some efforts to try to encourage a > conversation between Drs. Marshall and Cheney. I hope it happens, > and for all I know, it may have happened already. Neither of these > gentlemen work for me! Please bear in mind that honest people can > have honest differences of opinion. Sometimes when third parties > become involved, people's opinions are not accurately represented, > and misunderstandings can result. I think it is best if we > encourage the various researchers to communicate with each other > directly, and not say or do things that will make this more > difficult than it inherently is. It really is in all of our > interests for the researchers to get along with each other as well > as possible. Competition is fine, and can be very motivating, but I > think we really need to avoid personal animosities as much as we can. > > > > Rich, in closing, I want to be part of the solution and not the > > problem. I am post-graduate educated but in business. I am losing > > the ability to understand the more complexity of what is being > said > > about CFS lately. I wished we were talking groceries...lol I > think > > I asked TM some proper question when I was on the MP list then > > people like Suzanne told me to quit running my mouth and let TM > get > > about his work. Sounds like what Clinton told us when he was being > > asked about Lewinsky. I am going to stop posting about TM. > It > > seems like he should run for president. Being ill 29 years and > > trying every protocol around, I would like to see some success > > stories before we award TM the Nobel Prize. > > > > Bob > > I'm glad you want to be part of the solution, Bob. I feel the same > way. I'm sorry if things were said to you that didn't seem to be > very helpful. Having a thick skin and the ability to forgive are > really important things to cultivate. Remember that when a person > who is ill is helped by someone, the ill person has a tendency to > become fiercely loyal to that person. That's very understandable, > and a very human response. Loyalty is a good quality, but sometimes > it gets translated into too much defensiveness, and tends to hurt > other people's feelings, who don't understand the reason behind it. > We are all vulnerable to that tendency, and I think we need to make > allowances for each other. > > I hope we see lots of success stories, too, including yours. > > Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 No he does not use Benicar, nor does TM use any other ARB other than Benicar, so one might consider that both parties are biased and maybe experiment with what each has to offer. MP advocate will say TM already experimented with ARBs and Benicar is best but again, that is possible bias and we're all different, especially considering that we are a different group than what he is used to applying his protocol to. If I see my LLMD this fall I will hope to get some other ARB's and then compare them to Benicar. > >> There are too many medical experts saying that inflammation is at > > the heart of many chronic illnesses. > > > Bob > > Hi Bob, > > Dr. Moskowitz also uses ARB's for inflammation, but he does not > use Benicar ? When I asked Dr. Marhsall on the MP group list this a > few weeks ago , I got no reply from him. > Immunesupport.com has an article by Dr. Moskowitz. > > Al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 > " Also, the MP calls for getting off > > of all medication. " > It's statements like this that I feel need to be corrected so that > people are not misinformed. This does not mean that I'm defensive or > trying to convince anyone to do the protocol. > > penny Penny, I agree with you that it is not stated that a person " must " get off meds and suplements to try the MP. they are " encouraged " to do so. I have read posts by two nurses where they both encouraged this person to get off his antidepressants to give the MP a fair try. Suffering from severe depression and suicidal tendecies myself, it would be impossible for me to suddenly quit my SSRI's. It would surely lead to suicide. The withdrawal symptoms of getting off SSRI's suddenly are much worse than the depression. I am in my 6th month of slowing reducing my Effexor. Maybe this is why I am having " pms " moments...lol (private joke between Penny & I). I cannot understand a nurse suggesting tht someone get off of their antidepressants though. they should know the danger of that. Bob Quote Link to comment Share on other sites More sharing options...
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