Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Yes, Rich did say last year that a low protein diet is one suggestion by Yasko PWCs ought NOT do. We need protein in our diets and I think you case examples why. <jgstev716@...> wrote: > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 , But the point is to even get going on the protocall, if you are CBS, you MUST do her ammonia protocall which is LOW protein. Also. my point is; WE ALL NEED A BASELINE UAA AND MAP. Janet davidhall2020 <david-hall@...> wrote: Yes, Rich did say last year that a low protein diet is one suggestion by Yasko PWCs ought NOT do. We need protein in our diets and I think you case examples why. <jgstev716@...> wrote: > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 hi janet - my experience is a bit different - i am also cbs upregulated. when i got my gar back i realized that i needed to do bh4---have been taking 1/4 tablet twice daily for several months - didn't have my uaa and map done until after i'd been doing supplements for a month or so and my ammonia and urea were still very high....(i also have tested pos for many parasites which fits the picture).....my body is only now finally deciding it doesn't need as much protein....i have improved slightly several months into the ammonia protocol... deb Hi All, I just cannot keep quiet any longer. I was one of the first on Yakso and I am CBS + which means I needed to do her ammonia protocall. Well the low protein crashed my amino acids and my krebs cycle was almost zero all the way around the clock!! My adrenals are in big trouble and now I am supposed to use phossphatidyl serine which is known to lower cortisol??? I don't think that would be good for me and I think I need to pass on that. Funny thing, when I got off the ammonia protocall, my ammonia went down!! Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU START. I am one of the early people who tried the protocall. I have yet to even get to the detox because my body is to weak!! SO BUYER BEWARE AND USE CAUTION. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Hi, Janet. <jgstev716@...> wrote: > > , > > But the point is to even get going on the protocall, if you are CBS, you MUST do her ammonia protocall which is LOW protein. ***I understand that's what she says, but I know Rich clearly stated his disagreement on this point for PWCs and suggested protein intake not go low for us. So, I agree with your public caution and don't think it can be overstated, but just don't know how you missed this same point for PWCs by Rich as I recall him stating it to you quite specifically last year. > > Also. my point is; WE ALL NEED A BASELINE UAA AND MAP. ***I agree with this for the full Yasko Protocol. Her genetic testing is the biggest key to appropriate treatment, but these tests are very important quantitative status checks along the way so important treatment adjustments can be made. > Janet *** > > davidhall2020 <david-hall@...> wrote: > Yes, Rich did say last year that a low protein diet is one suggestion > by Yasko PWCs ought NOT do. We need protein in our diets and I think > you case examples why. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 People should only take action to lower ammonia if their ammonia levels have been confirmed high, not purely as they suspect it may be based on CBS polymorphism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 HI , I think you missed the point. I know Rich told me to up my protein. I am lucky in the fact that I can still control my CBS by doing that. Most people can't and if CBS is not control, one cannot do this protocall with success! Rich and Dr. Amy disagree on protein intake. Again if protein to to high, ammonia will not drop and the program cannot be done wiith success. This is what Trina talks about when she says " hit the wall. " As far as the UAA and MAP. I feel it is imperative that one check their baseline status with these tests to make sure they do not put themselves in harms way by starting this protocall. It is not a matter of along the way! It is a matter of not killing oneself by knowing what the body is doing, before you put it under more stress with this protocall. Janet davidhall2020 <david-hall@...> wrote: Hi, Janet. <jgstev716@...> wrote: > > , > > But the point is to even get going on the protocall, if you are CBS, you MUST do her ammonia protocall which is LOW protein. ***I understand that's what she says, but I know Rich clearly stated his disagreement on this point for PWCs and suggested protein intake not go low for us. So, I agree with your public caution and don't think it can be overstated, but just don't know how you missed this same point for PWCs by Rich as I recall him stating it to you quite specifically last year. > > Also. my point is; WE ALL NEED A BASELINE UAA AND MAP. ***I agree with this for the full Yasko Protocol. Her genetic testing is the biggest key to appropriate treatment, but these tests are very important quantitative status checks along the way so important treatment adjustments can be made. > Janet *** > > davidhall2020 <david-hall@...> wrote: > Yes, Rich did say last year that a low protein diet is one suggestion > by Yasko PWCs ought NOT do. We need protein in our diets and I think > you case examples why. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 I agree with the latter-UAA and MAP very useful and before I begin I will try to get those, which is why, considering the expense, I've put it off. I think Amy always said she wasn't rigid. When I communicated that I did not think I could tolerate yucca because of its estrogen properties, she in no way insisted on it. There were other options like charcoal. I think we are all individual. So for me I would not have reduced protein although I suspect some forms cause more ammonia than others. Surely red meat causes more ammonia than say, beans and rice, which are also a complete protein. > > > > Hi All, > > > > I just cannot keep quiet any longer. > > > > I was one of the first on Yakso and I am CBS + which means I needed > > to do her ammonia protocall. > > > > Well the low protein crashed my amino acids and my krebs cycle was > > almost zero all the way around the clock!! > > > > My adrenals are in big trouble and now I am supposed to use > > phossphatidyl serine which is known to lower cortisol??? I don't > > think that would be good for me and I think I need to pass on that. > > > > Funny thing, when I got off the ammonia protocall, my ammonia went > > down!! > > > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > > START. > > > > I am one of the early people who tried the protocall. I have yet to > > even get to the detox because my body is to weak!! > > > > SO BUYER BEWARE AND USE CAUTION. > > > > Janet > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 I also have 3 out of 4 CBS...I feel an incredible urge to take bh4 if that's the right word . An intuition so strong its almost a magnetic pull. How are you doing on it? > > hi janet - my experience is a bit different - i am also cbs upregulated. when i got my gar back i realized that i needed to do bh4---have been taking 1/4 tablet twice daily for several months - didn't have my uaa and map done until after i'd been doing supplements for a month or so and my ammonia and urea were still very high....(i also have tested pos for many parasites which fits the picture).....my body is only now finally deciding it doesn't need as much protein....i have improved slightly several months into the ammonia protocol... > deb > > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Jill, The UAA will tell you everything you want to know, when you get ready to do it. And yes, when I was asking about beans they were also considered the dreaded ammonia procucer. Janet jill1313 <jenbooks13@...> wrote: I agree with the latter-UAA and MAP very useful and before I begin I will try to get those, which is why, considering the expense, I've put it off. I think Amy always said she wasn't rigid. When I communicated that I did not think I could tolerate yucca because of its estrogen properties, she in no way insisted on it. There were other options like charcoal. I think we are all individual. So for me I would not have reduced protein although I suspect some forms cause more ammonia than others. Surely red meat causes more ammonia than say, beans and rice, which are also a complete protein. > > > > Hi All, > > > > I just cannot keep quiet any longer. > > > > I was one of the first on Yakso and I am CBS + which means I needed > > to do her ammonia protocall. > > > > Well the low protein crashed my amino acids and my krebs cycle was > > almost zero all the way around the clock!! > > > > My adrenals are in big trouble and now I am supposed to use > > phossphatidyl serine which is known to lower cortisol??? I don't > > think that would be good for me and I think I need to pass on that. > > > > Funny thing, when I got off the ammonia protocall, my ammonia went > > down!! > > > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > > START. > > > > I am one of the early people who tried the protocall. I have yet to > > even get to the detox because my body is to weak!! > > > > SO BUYER BEWARE AND USE CAUTION. > > > > Janet > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Carnitine and Arabinex and Butyrate will control ammonia. Janet jill1313 <jenbooks13@...> wrote: I also have 3 out of 4 CBS...I feel an incredible urge to take bh4 if that's the right word . An intuition so strong its almost a magnetic pull. How are you doing on it? > > hi janet - my experience is a bit different - i am also cbs upregulated. when i got my gar back i realized that i needed to do bh4---have been taking 1/4 tablet twice daily for several months - didn't have my uaa and map done until after i'd been doing supplements for a month or so and my ammonia and urea were still very high....(i also have tested pos for many parasites which fits the picture).....my body is only now finally deciding it doesn't need as much protein....i have improved slightly several months into the ammonia protocol... > deb > > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Hi, Janet. <jgstev716@...> wrote: > > HI , > > I think you missed the point. I know Rich told me to up my protein. I am lucky in the fact that I can still control my CBS by doing that. Most people can't and if CBS is not control, one cannot do this protocall with success! Rich and Dr. Amy disagree on protein intake. Again if protein to to high, ammonia will not drop and the program cannot be done wiith success. This is what Trina talks about when she says " hit the wall. " ***Alright. > > As far as the UAA and MAP. I feel it is imperative that one check their baseline status with these tests to make sure they do not put themselves in harms way by starting this protocall. It is not a matter of along the way! ***I agree. I meant that comment to mean from the beginning and throughout the whole process of treatment. It is a matter of not killing oneself by knowing what the body is doing, before you put it under more stress with this protocall. ***I get it. > > Janet *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi Janet -- phosphatidyl serine lowers cortisol, but that's why you only take it in the late afternoon and early evening, so that it gradually resets your adrenal glands and your circadian rhthym so that over many months, you build up your cortisol reserves so that your cortisol is low at night and higher in the morning as it should be. My doctor highly recommends it and uses it with most of her severely adrenal-fatigued patients. She had one patient who's adrenals were so fried that she was close to addison's. But three years later she is doing much better and working part time. I'm sorry however that parts of the Yasko protocol didn't work for you, but I would get a second opinion about the PS -- I think it just MAY help you in the long run. Some people have to take it for a year or more... Dan > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I'm sure it was not easy, but thank you for speaking out, Janet. Some of our systems are very fragile, and " set-backs " , from treatment or actions, even including " die-off " and " detox " are not minor irritants for us, but can be very dangerous. There are many, many cases of serious and long term harm from experiments we PWCs have tried...this is just a fact, and experienced or witnessed by many on this board. (Myself and dear friends included). It is only right and ethical to report any risks or problems, as cautionary to others, and acknowledgement/reality to ourselves. I hope you will be exquisitely careful in healing...and can get your strength back and system balanced. There is also a woman in immunesupport.com who said she was " doing so well on the methylation protocol " and riding her bike who now is at the hospital for the 3rd time in 3 days, with severe breathing problems, dizziness, pain in chest, arm and neck, fever, and very afraid. Katrina > > Hi All, > > I just cannot keep quiet any longer. > > I was one of the first on Yakso and I am CBS + which means I needed > to do her ammonia protocall. > > Well the low protein crashed my amino acids and my krebs cycle was > almost zero all the way around the clock!! > > My adrenals are in big trouble and now I am supposed to use > phossphatidyl serine which is known to lower cortisol??? I don't > think that would be good for me and I think I need to pass on that. > > Funny thing, when I got off the ammonia protocall, my ammonia went > down!! > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > START. > > I am one of the early people who tried the protocall. I have yet to > even get to the detox because my body is to weak!! > > SO BUYER BEWARE AND USE CAUTION. > > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I second this--in my case it was salt/c that devastated and me and when I researched it I found that any adverse reactions had been squelched as effectively as could be. It took me asking on other lists and this one and researching to find that many people had been harmed. Who is the person in the hospital and afraid? Was it that she overdid it or is it something to do with the protocol? Everybody who believes they have " invented " a one fits all protocol to treat chronic illness had better be careful in proclaiming it effective or a cure. These people are not doctors. Sometimes they have the absolute BEST of intentions (as Rich does) and sometimes not (in my opinion Marc of lymestrategies, since he sold an ebook, had monetary interests at the forefront). But the pride of ownership and the hope of finding " the " answer can blur anybody's sensibility. They should take the same approach as Ken Laasen's FWIW protocol which makes clear its FWIW, he's not a doctor, you must work with YOUR doctor, and simply explains in great detail what he and his family did and progress and setbacks over a period of YEARS. > > > > Hi All, > > > > I just cannot keep quiet any longer. > > > > I was one of the first on Yakso and I am CBS + which means I needed > > to do her ammonia protocall. > > > > Well the low protein crashed my amino acids and my krebs cycle was > > almost zero all the way around the clock!! > > > > My adrenals are in big trouble and now I am supposed to use > > phossphatidyl serine which is known to lower cortisol??? I don't > > think that would be good for me and I think I need to pass on that. > > > > Funny thing, when I got off the ammonia protocall, my ammonia went > > down!! > > > > Over and over I will say this: GET A UAA AND A MAP BEFORE STARTING > > THIS PROTOCALL. YOU NEED TO KNOW WHERE YOUR BODY IS AT BEFORE YOU > > START. > > > > I am one of the early people who tried the protocall. I have yet to > > even get to the detox because my body is to weak!! > > > > SO BUYER BEWARE AND USE CAUTION. > > > > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi, all. I'm concerned about this woman's condition, too, and am praying for her. I'd like to fill in a few details about her case that she has posted on the public ImmuneSupport CFS discussion board: She's a woman in her 40s, living in Rocky River, Ohio. She has both CFIDS and FM, and has been ill for more than ten years. Her illness began in 1996 with brain injury due to carbon monoxide exposure from a faulty boiler in her condo. She was also exposed later on to black mold, aspergillus and other molds because of a roof leak, and this led to problems with her lungs, for which she received a variety of diagnoses. She began the methylation cycle block treatment on May 27, 2007. She also started taking the " top ten " supplements from Dr. Yasko's discussion forum, and she continued taking whey protein, which she had found to help with her sleep. On June 1 she reported that she was doing " pretty well, " proceeding slowly with the treatment. She had had the UAA, UTE/UEE and MAP urine tests, which had confirmed a methylation cycle block, and she was awaiting her genetics test results. On June 17 she reported skin itching and burning, which she thought might have been due to a gluten exposure the previous day. As late as June 18 she commented on her severe fatigue. On June 20 she noted that infected areas involving her teeth and root canals appeared to be healing. She reported that she had been doing " really well " on the methylation treatment during this time, and her energy level had improved to the point that she was able to ride her bicycle. On about June 27, she developed a fever of 99.8 F. On July 1, she reported that she felt " punk, " and that she had raised her whey protein intake to 5 grams twice a day. On July 3, she went to the Cleveland Clinic ER and was there all day. She went there because she had awakened with severe breathing problems, had had the 99.8 F. fever for seven days, and had chest and arm pain, as well as shortness of breath. They found that she had not had a heart attack, but that she did have an enlarged left atrium and diastolic dysfunction, diagnosed by echocardiography. She did not receive impedance cardiography, because they do not have that instrument. She was home on July 4. On July 5, she returned to the ER with severe breathing problems and pain in the chest, left arm and neck/jaw. Her fever had risen to 100.1, and had been going on for eight days. She returned home, but planned to return to the ER the next day, which is today. That's all I know so far. I certainly hope that things will settle back down for her. It's difficult to say for sure what is going on in her case, but I think that die-off and detox stimulated by the methylation cycle block treatment is a possibility. If so, it should slow down with time as she is off the supplements. As you know, diastolic dysfunction and enlarged left atrium are things that Dr. Cheney has been finding in many PWCs. For what it's worth, my hypothesis holds that these are caused by glutathione depletion in the heart muscle cells, which puts a partial block into the Krebs cycles and lowers the production rate of ATP. Low rate of production of ATP gives rise to diastolic dysfunction, because the rate of relaxation of the heart muscle during diastole is limited by the rate of ATP supply to the muscle. The enlargement of the left atrium then occurs because of the additional effort the left atrium has to exert to inject the blood into the left ventricle, in the presence of diastolic dysfunction. It is my prediction that over time the diastolic dysfunction can be corrected by the methylation treatment as the glutathione level in the heart muscle is restored to normal. Hopefully the left atrium would be able to go back to its normal size as well. The real question is whether she would be able to tolerate the treatment, given the current condition of her heart and lungs. Perhaps doing it very slowly would work, but of course, our experience is very limited. I don't know how well the lungs can be restored. Lung damage is difficult to repair, and I don't know the details of her lung condition. I await more news from her. These are the facts as I believe them to be. Rich > There is also a woman in immunesupport.com who said she was " doing so well on the methylation protocol " and riding her bike who now is at the hospital for the 3rd time in 3 days, with severe breathing problems, dizziness, pain in chest, arm and neck, fever, and very afraid. > > Katrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Thank you for posting this Rich. It is not good that you posted that long post about " cure " and all the good things happening to people and left this out. It is possible then that detox stimulated by the protocol has put her in the ER? Don't you think others want to know that? And now a few people are coming out and--on CFS Yasko I just see another post--someone had sleep disturbance, unusual thirst, and " roid rage " on the protocol. I think you knew these things. I think it's very unfortunate that people were not honest about this reporting and you did not disclose these things previously. I feel like it was my hectoring on both threads that lead to this. In a perverse way, though I suffer mightily for salt-c, I have to thank Kurt R for my hectoring. I learned a valuable lesson about how, when someone wants to believe in a protocol, they will ignore all negatives to the detriment of themselves and others. You are also offering what amounts to medical advice, occasionally, on immunesupport. You are a very smart man, you've devoted yourself to studying this, BUT you must examine now why you kept these issues to yourself when you posted about how well this was working. Because you could do harm to people, Rich, if they didn't hear any of the negatives. And also, and again, I am interested in the simplified protocol and I think very interested and have been for a year in Amy's personalized approach, BUT, you should always tell people to work with their doctors. ALWAYS. This should be under a doctor's supervision. Thanks. And this is more reason to have a questionnaire. > > > There is also a woman in immunesupport.com who said she was " doing > so well on the methylation protocol " and riding her bike who now is > at the hospital for the 3rd time in 3 days, with severe breathing > problems, dizziness, pain in chest, arm and neck, fever, and very > afraid. > > > > Katrina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 And my big reason for posting the caution, was that this may be a great protocall for alot of us. But we need to understand the CBS must be addressed and WE MUST ALL RUN THE UAA AND MAP AT LEAST TWICE A YEAR TO STAY OUT OF TROUBLE. Janet jill1313 <jenbooks13@...> wrote: Thank you for posting this Rich. It is not good that you posted that long post about " cure " and all the good things happening to people and left this out. It is possible then that detox stimulated by the protocol has put her in the ER? Don't you think others want to know that? And now a few people are coming out and--on CFS Yasko I just see another post--someone had sleep disturbance, unusual thirst, and " roid rage " on the protocol. I think you knew these things. I think it's very unfortunate that people were not honest about this reporting and you did not disclose these things previously. I feel like it was my hectoring on both threads that lead to this. In a perverse way, though I suffer mightily for salt-c, I have to thank Kurt R for my hectoring. I learned a valuable lesson about how, when someone wants to believe in a protocol, they will ignore all negatives to the detriment of themselves and others. You are also offering what amounts to medical advice, occasionally, on immunesupport. You are a very smart man, you've devoted yourself to studying this, BUT you must examine now why you kept these issues to yourself when you posted about how well this was working. Because you could do harm to people, Rich, if they didn't hear any of the negatives. And also, and again, I am interested in the simplified protocol and I think very interested and have been for a year in Amy's personalized approach, BUT, you should always tell people to work with their doctors. ALWAYS. This should be under a doctor's supervision. Thanks. And this is more reason to have a questionnaire. > > > There is also a woman in immunesupport.com who said she was " doing > so well on the methylation protocol " and riding her bike who now is > at the hospital for the 3rd time in 3 days, with severe breathing > problems, dizziness, pain in chest, arm and neck, fever, and very > afraid. > > > > Katrina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 TRIM your posts, please. mjh ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi, Jill. Thank you again for the advice. I don't know if you are familiar with the story Jesus told about the widow and the unrighteous judge, but our interaction reminds me of that. It's at Luke 18: 1-8. Concerning this other woman's situation, I actually just learned about it this afternoon from Katrina's post here, and I then went back and compiled her history from her previous posts, which I posted here. So I wasn't suppressing any information. I've been so busy with so many emails lately that I have difficulty following all the people who are trying this treatment, and the number seems to be growing rapidly. Yes, people do have die-off and detox symptoms on this treatment. I think I have expressed that honestly, too. Over the past four months on ImmuneSupport, these issues have been reported and discussed very openly. If you want to follow what's going on with the simplified approach in more detail, as I suggested before, I suggest that you invest some time in looking at the posts over there, as I do. While the group here has primarily focused on the full Yasko treatment approach, the folks over there are mainly doing the simplified approach. Of course, there is a growing number of them getting more testing done, and there is a growing number of people here signing on over there, so it isn't as clearcut as it was a while back. If you are lacking information, that's the place to look. It's not that I'm suppressing anything, it's just that it's over there. To get an accurate picture, one has to look further than a single post. There definitely are ups and downs on this treatment. If you click on a person's name there, you can get the list of all their posts, and get a bigger picture over time of what is going on with that particular person. This is somewhat time-consuming, but I find it's necessary to get a more complete picture of the facts. I actually do recommend that people do this treatment with the cooperation of their doctors. A lot of my effort these days involves bringing doctors up to speed, because I think that is our real hope to reach large numbers of PWCs. I met with three doctors last Monday, and have been emailing with several this week. I'm not going to discuss my individual correspondence with the doctors, but I can tell you that there are several who are getting interested in this treatment, now that it is simpler and more practical to apply in their offices. And some of their patients are coming in and telling them that they are being helped, in some cases where the doctors have been working with them for a long time and have not seen much improvement. So a lot is happening behind the scenes. I know that you have lots of ideas about things I should do. I don't disagree with most of them as being good ideas. The problem is that I am only one person. I have family and household responsibilities. I have consulting clients. I am working on many pro bono cases. I am trying to track several internet lists and follow a large number of cases. I spent most of a week not long ago in the hospital. You seem to believe that I'm a superman, but I'm not. I believe that you believe that you are doing good things by working me over, but please give me some breathing room. As far as the questionnaire goes, I think it's a good idea in concept, but I think that more experience is needed before an appropriate one could be constructed. If you disagree, please feel free to do what you think is appropriate, but be aware that if your interpretation of the data turns out to be lacking or incorrect based on my understanding of the issues, I will be just as honest about that as you have been with me about your views on what I'm doing. The internet is loaded with half-baked questionnaires that are often counterproductive, because there was not enough understanding that went into developing them. Some are worse than useless, because they turn out to be misleading. I have a lot of experience in developing questionnaires, and I have learned this the hard way. I hope you understand that just as you would like to have more exact data about how this treatment is working and what its shortcomings might be, I would also like to make sure that any conclusions people reach about it publicly are valid, because I think that the opportunity for helping a lot of people with this treatment is very high, and that is my goal. I certainly agree that we need to know how to be cautious about applying it, and we need to know whether there are people who should not try it, for various reasons. We are gathering those kinds of data from people's experiences now. I don't know how else to it, and I certainly don't want to cause people more problems than they already have, but as I said, when you start something new in research, it isn't very tidy for a while. Rich > > > > > There is also a woman in immunesupport.com who said she was " doing > > so well on the methylation protocol " and riding her bike who now is > > at the hospital for the 3rd time in 3 days, with severe breathing > > problems, dizziness, pain in chest, arm and neck, fever, and very > > afraid. > > > > > > Katrina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Rich, to sum it up, *if you're so busy* and can't follow up properly, then do NOT post what you did the other day, with big headlines on this and the Yasko list about this protocol working, and listing a bunch of vague improvements without detailing the cases or saying how many or who. That's why. You're not ready to back up your claims and clearly you're learning belatedly about someone in dire trouble. If you're not a superman and yes, you were just in the hospital, then hold off on making claims. Is that not a reasonable request? And if you make those claims, is it not reasonable to ask you to back them up? I really am tired of so many non-doctors playing scientist and saying they have the new cure for stuff, whether it was Trevor Marshall or Marc of lymestrategies or even you. There is something surpassingly strange about it. What is behind it, really? Is it just good will? Or is there some kind of immense ego driving it all? I'd really like to know. But above all I want people to be protected through *FULL DISCLOSURE*. Thanks. > > > > > > > There is also a woman in immunesupport.com who said she > was " doing > > > so well on the methylation protocol " and riding her bike who now > is > > > at the hospital for the 3rd time in 3 days, with severe breathing > > > problems, dizziness, pain in chest, arm and neck, fever, and very > > > afraid. > > > > > > > > Katrina > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I'm not on a high horse. We got some valuable information in the last 24 hours about the negatives, didn't we? Or is it not valuable to you? > > > > > There is also a woman in immunesupport.com who said she was " doing > > so well on the methylation protocol " and riding her bike who now is > > at the hospital for the 3rd time in 3 days, with severe breathing > > problems, dizziness, pain in chest, arm and neck, fever, and very > > afraid. > > > > > > Katrina > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 More experience is needed before making a questionaire, but not before claiming a cure has been found? And as far as reaching " valid conclusions " , it seems like literally anything anyone has said about the methylation protocol having a negative effect is summarily labelled " detox " with no other explaination offered. As the following shows, some people experience a potentially serious allergic reaction to folinic acid, one of the supplements on the protocol, and when people have claimed to experience these very symptoms, or similar ones, it still is explained away as " detox " . (leucovorin is the prescription name for folinic acid) Q:What are the side effects associated with treatment with leucovorin? A:Side effects directly attributable to leucovorin are not common. However, patients may experience an allergic-type reaction to leucovorin that may be characterized by difficulty breathing, wheezing, rash, itching, hives, closing of the throat and/or dizziness. This is not a complete list of side effects. Some patients may experience other side effects that are not listed here. Patients may wish to discuss with their physician the other less common side effects of this drug, some of which may be serious. Some side effects may require medical attention. Other side effects do not require medical attention and may go away during treatment. Patients should check with their physician about any side effects that continue or are bothersome. http://cancer.unm.edu/drug_dictionary.aspx?id=734 > > > > > > > There is also a woman in immunesupport.com who said she > was " doing > > > so well on the methylation protocol " and riding her bike who now > is > > > at the hospital for the 3rd time in 3 days, with severe breathing > > > problems, dizziness, pain in chest, arm and neck, fever, and very > > > afraid. > > > > > > > > Katrina > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I don't generally join in arguments, but I believe Rich has been more than open about his credentials, his limited time, and his hypothesis which has been perfectly clear from the beginning, is to be used at your own discretion and with your own medical advisor's help. It seems a bit much to begin accusations, demands for even more of his time and effort, and attention to a questionnaire that may be interesting but will be essentially unscientific. You can cause dissention and a loss of useful information for the rest of us PWCs. There are inherent risks in any treatment people choose, we must each take personal responsibility for making these decisions. I understand your concerns, but please back off just a little. Jill Re: Re: YASKO,-CAUTION jill1313, I really think that you need to get off of your high horse. I think your accusations about Rich are unfounded and unwarranted. Rich has always said that he is not a medical doctor and his ideas are just hypotheses. Every 'treatment' for CFS helps some but not all. Most treatments cause very negative detox and die-off symptoms. I think Rich is very excited about the many positive outcomes to his 'simplified approach'. Of course it's early, but who could blame him? He's spent many years dedicating himself to understanding CFS and trying to assuage our suffering. He's more caring and more knowledgeable than most of the doctors that treat CFS patients. The one issue that I think needs some consideration is the cardiac diastolic dysfunction. If muscle fatigue is reversed before the heart muscle is restored, that could obviously lead to more heart problems. It sounds like Rich has been putting a lot of thought into this. As to the whys and wherefores of his response, I'm going with Rich's thoughtfulness over your hectoring. You know, of course, that to hector means to bully. -Jan jill1313 <jenbooks13@...> wrote: Thank you for posting this Rich. It is not good that you posted that long post about " cure " and all the good things happening to people and left this out. It is possible then that detox stimulated by the protocol has put her in the ER? Don't you think others want to know that? And now a few people are coming out and--on CFS Yasko I just see another post--someone had sleep disturbance, unusual thirst, and " roid rage " on the protocol. I think you knew these things. I think it's very unfortunate that people were not honest about this reporting and you did not disclose these things previously. I feel like it was my hectoring on both threads that lead to this. In a perverse way, though I suffer mightily for salt-c, I have to thank Kurt R for my hectoring. I learned a valuable lesson about how, when someone wants to believe in a protocol, they will ignore all negatives to the detriment of themselves and others. You are also offering what amounts to medical advice, occasionally, on immunesupport. You are a very smart man, you've devoted yourself to studying this, BUT you must examine now why you kept these issues to yourself when you posted about how well this was working. Because you could do harm to people, Rich, if they didn't hear any of the negatives. And also, and again, I am interested in the simplified protocol and I think very interested and have been for a year in Amy's personalized approach, BUT, you should always tell people to work with their doctors. ALWAYS. This should be under a doctor's supervision. Thanks. And this is more reason to have a questionnaire. > > > There is also a woman in immunesupport.com who said she was " doing > so well on the methylation protocol " and riding her bike who now is > at the hospital for the 3rd time in 3 days, with severe breathing > problems, dizziness, pain in chest, arm and neck, fever, and very > afraid. > > > > Katrina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi j. Thank you for your comments. Actually I have not claimed that a cure has been found. In fact, in the post I made that has been objected to, I said that one of the questions remaining to be answered is whether this treatment will continue to work over the long term, all the way to producing cures. That's one of the things that is yet to be determined. In other communications, I've said that I think this treatment has the potential to be a cure, but that this remains to be proven. I still do think that, and my expectation is based on what I think is an understanding of the root issues in the biochemistry. Of course, I could turn out to be wrong, and that has certainly happened in the past. But I come from a background in which projections are made based on theory and then tested by observation, and that's how I'm proceeding here. That is the scientific method as I have been trained in it and have used it for a long time. In my experience, hypothesis-driven research is generally the most successful way to extend our knowledge. I realize that this is not commonly done in the biomedical field, but I think that enough theory has been developed there now that it is possible to operate that way, just as has been done for a long time in the physical sciences. Biomedical science is no longer just observation and collection of facts. It is becoming more like physics, and that is the area I have trained and worked in. There was a famous physicist who said that " There are two kinds of activities in science. There is physics, and there is stamp collecting. If you are not doing physics, you are stamp collecting. " What he meant by this is either you are operating on the basis of theory and projecting ahead with it, or you are simply collecting bits of information and putting them in the books. I think that one of the reasons why progress has been so slow in CFS research is that too many are just going on merrily collecting stamps, many of which have little to do with developing a basic understanding of this disorder so that it can be determined how to cure it. Thank you for sharing the information about allergic reactions to leucovorin. Please note that one of the cautions I included in my writeup is that people should be alert to respiratory and cardiac symptoms. I also recommended more than once that the treatment be undertaken with the cooperation of a doctor. I am trying now to add to the number of doctors willing to do this. Rich > > > > > > > > > There is also a woman in immunesupport.com who said she > > was " doing > > > > so well on the methylation protocol " and riding her bike who > now > > is > > > > at the hospital for the 3rd time in 3 days, with severe > breathing > > > > problems, dizziness, pain in chest, arm and neck, fever, and > very > > > > afraid. > > > > > > > > > > Katrina > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 jill' I just read Rich’s reply to you and I think he was much too kind. You jump to conclusions and make weird, unfounded accusations. You keep saying that he has proclaimed the ‘simplified approach’ to be a cure. Maybe I missed it, but I have read all his posts and never saw that. He did say that he had expectations that this will be a cure, but only time will tell. -Jan jill1313 <jenbooks13@...> wrote: I'm not on a high horse. We got some valuable information in the last 24 hours about the negatives, didn't we? Or is it not valuable to you? > > > > > There is also a woman in immunesupport.com who said she was " doing > > so well on the methylation protocol " and riding her bike who now is > > at the hospital for the 3rd time in 3 days, with severe breathing > > problems, dizziness, pain in chest, arm and neck, fever, and very > > afraid. > > > > > > Katrina > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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