Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi, all. Here's a response I just sent to Marcia on the cfsfmresearch list, in response to her request to be kept informed of what I've been doing in CFS research lately: Hi, Marcia. Thanks for your interest in what I'm up to! These days I'm doing more thinking and writing than posting. I've agreed to coauthor a paper on mitochondrial dysfunction in CFS with Dr. Myhill and am working on that. Don't worry, if I come up with anything I think is significant, I'll post it here as well. The glutathione depletion hypothesis does seem to fit quite a few PWCs, and a few are able to raise glutathione by direct approaches, using glutathione itself in various forms, or its precursor amino acids, or both. Many, however, do not seem to be able to do this, probably because of a vicious circle mechanism involving the earlier parts of the sulfur metabolism, which is holding down the glutathione and making CFS a chronic disorder. The autism--CFS pathogenesis parallel that I started emphasizing last fall seems to be proving out. Quite a few PWCs who have low glutathione have ordered the polymorphisms panel recommended by Dr. Yasko, from http://www.testing4health.com. The early ones seem to be coming back with the same polymorphisms as are seen in autism. Some even have the CBS polymorphisms, characteristic of the most seriously ill kids with autism. So I think that this vicious circle hypothesis is going to cover a pretty big subset of PWCs. It remains to be seen if the autism treatments to compensate for the polymorphisms will break the vicious circle for these PWCs as well, and allow their glutathione to come back up, as they do in autism. It's still too early to comment much on that, though early signs are good in the very few people I know of who are trying this, and biochemical theory would seem to predict that it will work. I'm also tracking the results coming back, mostly to PWCs in the U.K., from the ATP Profile test and the ATP/ADP translocator protein test offered by BioLab Medical Unit (or Acumen) in the U.K. These test results are clearly showing mitochondrial dysfunction in PWCs, and the degree of it appears to correlate with the degree of disability, according to Dr. Myhill's and Dr. McLaren 's work. I'm toying with an " umbrella " hypothesis for CFS and Lyme disease now that involves mitochondrial dysfunction as the common denominator for different subsets. Many PWCs do appear to have glutathione depletion and a vicious circle involving the methylation cycle or other earlier parts of the sulfur metabolism, as studied by the autism people, as I've been emphasizing. Others may not have this vicious circle, but may have ongoing mitochondrial dysfunction for other reasons. Dr. wrote me that he sees many cases of mitochondrial dysfunction that do not involve glutathione depletion. All the cells in the body (except red blood cells, type 2 skeletal muscle cells and a few other cell types) have mitochondria. Dr. 's test on neutrophils shows that the mitochondria of neutrophils show dysfunction in CFS. If the neutrophils show this problem (they have a lifetime of only a few days), then it must be a problem for other, longer-lived cell types as well, since they will have a longer time to accumulate toxins. In many cases in which there is mitochondrial dysfunction but not glutathione depletion, I think the problem is chemical toxicity. These people have polymorphisms in their detox system, as shown by the Genovations Detoxigenomic profile. I think that polymorphisms in the glutathione transferase enzymes are part of this, allowing the glutathione level to stay up, but making the glutathione largely unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are involved in many cases as well. Then these people were exposed to significant amounts of any of a variety of chemical toxins, including pharmaceuticals. Their bodies were not able to shed the toxins because of their detox system polymorphisms, and the toxins therefore built up. As the ATP Profile test is showing, a variety of toxins can block enzymes in the mitochondria, producing mitochondrial dysfunction. That's what I believe leads to the symptoms of fatigue and many of the other symptoms of CFS. So again we have a combination of a genetic predisposition and " environmental " factors, but in these cases, the genetic predisposition involves the detox system rather than the methylation cycle. Borrelia have been found to deplete cysteine and glutathione, as I posted last January, and I think that's the tie-in between CFS and Lyme disease and the reason the symptom sets are so similar between Lyme disease and CFS caused by other factors. Once you produce ongoing mitochondrial dysfunction, by whatever mechanism, I think you are going to have chronic fatigue, chronic pain and the rest of the symptoms of CFS. It would be very interesting to see what the immune system polymorphisms are in people with Lyme disease. This might answer the question we have been kicking around for years, i.e. whether some people are particularly susceptible to chronic Lyme disease because of their genetic makeup. I don't currently know the answer to this question. Some people unfortunately were born with significant polymorphisms in both their detox system and their methylation cycle. This is a bad combination. I've been happy to see the funded researchers reporting work on polymorphisms lately. I hope this continues, and that they look at the polymorphisms in the detox system and in the methylation cycle, as well as in other systems involved in the early part of the pathogenesis of CFS, including the stress response and neurotransmitter systems (which the CDC has reported on lately), the antioxidant enzyme system (including the glutathione system), and the immune system. The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has been emphasizing lately stem directly from mitochondrial dysfunction, in my opinion. The viral infection in the heart in the cases studied by Dr. Lerner results from immune suppression, which is probably a result of glutathione depletion and methylation cycle/folate metabolism block. Low cardiac output from either of these causes leads to a lot of other problems, including poor perfusion of the brain. I think the above basic framework will explain what's going on in the bulk of the cases. There are probably some subsets that are still not explained by the above, however. I guess that's " job security " for us researhers, not that I need that at this point in my life! Treating the people with the detox polymorphisms may be more difficult than treating the ones with the autism-like polymorphisms involving the methylation cycle and folate metabolism, etc. I think it's important first to identify the toxins that are present. Then, how do you get the toxins out, if you don't have a detox system that can function properly? I think lowering the input of toxins is number one, using clean air and water and organic foods, and avoiding sources of toxins. Then I think building up the normal detox system as much as possible is next, putting in sulfur- containing substances as tolerated, starting with sulfate and taurine if they are low. Then I think that passing substances through the gut that will bind the specific types of toxins that are present may help, including activated charcoal, cholestyramine, bentonite, indigestible fiber, as appropriate to the toxins present. Then careful use of saunas, making sure to replace minerals and water. If the problem is metals, perhaps elevated (but nontoxic) doses of the essential minerals will help to flush them out. Then careful chelation for heavy metals, if needed, making sure that the glutathione level is up before doing so. This process might take quite a while, if the body burdens of toxins are high. Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 " rvankonynen " wrote: > Some people unfortunately were born with significant polymorphisms > in both their detox system and their methylation cycle. This is a > bad combination. Rich, obviously, it is ridiculous to accuse autistic infants of having their illness result from an inordinate burden of emotional stress which is not present in undue or sometimes nonexistent amounts. If an autistic child has any incapacity to deal with normal levels of emotional stress, it would be the result of the illness and not the cause. Everytime someone reverses the cause-effect relationship and asserts that the cart is driving the horse, they are missing the point that just because two factors are associated - one is not simply free to reverse the order. A cart can only push the horse if something ELSE is seriously wrong and the horse loses control. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 What you said below is new and interesting. When you say high doses of essential minerals will flush metals out, do you mean out of the cells ? ** Ive tried to flush them out via minerals - it didnt work for me! Regards CS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 > > Hi, all. > > These days I'm doing more thinking and writing than posting. I've > agreed to coauthor a paper on mitochondrial dysfunction in CFS with > Dr. Myhill and am working on that. Don't worry, if I come up with > anything I think is significant, I'll post it here as well. > > The glutathione depletion hypothesis does seem to fit quite a few > PWCs, and a few are able to raise glutathione by direct approaches, > using glutathione itself in various forms, or its precursor amino > acids, or both. Many, however, do not seem to be able to do this, > probably because of a vicious circle mechanism involving the earlier > parts of the sulfur metabolism, which is holding down the > glutathione and making CFS a chronic disorder. > > The autism--CFS pathogenesis parallel that I started emphasizing > last fall seems to be proving out. Quite a few PWCs who have low > glutathione have ordered the polymorphisms panel recommended by Dr. > Yasko, from http://www.testing4health.com. The early ones seem to > be coming back with the same polymorphisms as are seen in autism. > Some even have the CBS polymorphisms, characteristic of the most > seriously ill kids with autism. So I think that this vicious circle > hypothesis is going to cover a pretty big subset of PWCs. It > remains to be seen if the autism treatments to compensate for the > polymorphisms will break the vicious circle for these PWCs as well, > and allow their glutathione to come back up, as they do in autism. > It's still too early to comment much on that, though early signs are > good in the very few people I know of who are trying this, and > biochemical theory would seem to predict that it will work. > > I'm also tracking the results coming back, mostly to PWCs in the > U.K., from the ATP Profile test and the ATP/ADP translocator protein > test offered by BioLab Medical Unit (or Acumen) in the U.K. These > test results are clearly showing mitochondrial dysfunction in PWCs, > and the degree of it appears to correlate with the degree of > disability, according to Dr. Myhill's and Dr. McLaren 's > work. > > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease > now that involves mitochondrial dysfunction as the common > denominator for different subsets. Many PWCs do appear to have > glutathione depletion and a vicious circle involving the methylation > cycle or other earlier parts of the sulfur metabolism, as studied by > the autism people, as I've been emphasizing. Others may not have > this vicious circle, but may have ongoing mitochondrial dysfunction > for other reasons. Dr. wrote me that he sees many cases of > mitochondrial dysfunction that do not involve glutathione depletion. > > All the cells in the body (except red blood cells, type 2 skeletal > muscle cells and a few other cell types) have mitochondria. Dr. > 's test on neutrophils shows that the mitochondria of > neutrophils show dysfunction in CFS. If the neutrophils show this > problem (they have a lifetime of only a few days), then it must be a > problem for other, longer-lived cell types as well, since they will > have a longer time to accumulate toxins. > > In many cases in which there is mitochondrial dysfunction but not > glutathione depletion, I think the problem is chemical toxicity. > These people have polymorphisms in their detox system, as shown by > the Genovations Detoxigenomic profile. I think that polymorphisms > in the glutathione transferase enzymes are part of this, allowing > the glutathione level to stay up, but making the glutathione largely > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are > involved in many cases as well. Then these people were exposed to > significant amounts of any of a variety of chemical toxins, > including pharmaceuticals. Their bodies were not able to shed the > toxins because of their detox system polymorphisms, and the toxins > therefore built up. As the ATP Profile test is showing, a variety > of toxins can block enzymes in the mitochondria, producing > mitochondrial dysfunction. That's what I believe leads to the > symptoms of fatigue and many of the other symptoms of CFS. So again > we have a combination of a genetic predisposition > and " environmental " factors, but in these cases, the genetic > predisposition involves the detox system rather than the methylation > cycle. > > Borrelia have been found to deplete cysteine and glutathione, as I > posted last January, and I think that's the tie-in between CFS and > Lyme disease and the reason the symptom sets are so similar between > Lyme disease and CFS caused by other factors. Once you produce > ongoing mitochondrial dysfunction, by whatever mechanism, I think > you are going to have chronic fatigue, chronic pain and the rest of > the symptoms of CFS. > > It would be very interesting to see what the immune system > polymorphisms are in people with Lyme disease. This might answer > the question we have been kicking around for years, i.e. whether > some people are particularly susceptible to chronic Lyme disease > because of their genetic makeup. I don't currently know the answer > to this question. > > Some people unfortunately were born with significant polymorphisms > in both their detox system and their methylation cycle. This is a > bad combination. > > I've been happy to see the funded researchers reporting work on > polymorphisms lately. I hope this continues, and that they look at > the polymorphisms in the detox system and in the methylation cycle, > as well as in other systems involved in the early part of the > pathogenesis of CFS, including the stress response and > neurotransmitter systems (which the CDC has reported on lately), the > antioxidant enzyme system (including the glutathione system), and > the immune system. > > The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has > been emphasizing lately stem directly from mitochondrial > dysfunction, in my opinion. The viral infection in the heart in the > cases studied by Dr. Lerner results from immune suppression, which > is probably a result of glutathione depletion and methylation > cycle/folate metabolism block. Low cardiac output from either of > these causes leads to a lot of other problems, including poor > perfusion of the brain. > > I think the above basic framework will explain what's going on in > the bulk of the cases. There are probably some subsets that are > still not explained by the above, however. I guess that's " job > security " for us researhers, not that I need that at this point in > my life! > > Treating the people with the detox polymorphisms may be more > difficult than treating the ones with the autism-like polymorphisms > involving the methylation cycle and folate metabolism, etc. I think > it's important first to identify the toxins that are present. Then, > how do you get the toxins out, if you don't have a detox system that > can function properly? I think lowering the input of toxins is > number one, using clean air and water and organic foods, and > avoiding sources of toxins. Then I think building up the normal > detox system as much as possible is next, putting in sulfur- > containing substances as tolerated, starting with sulfate and > taurine if they are low. Then I think that passing substances > through the gut that will bind the specific types of toxins that are > present may help, including activated charcoal, cholestyramine, > bentonite, indigestible fiber, as appropriate to the toxins > present. Then careful use of saunas, making sure to replace > minerals and water. If the problem is metals, perhaps elevated (but > nontoxic) doses of the essential minerals will help to flush them > out. Then careful chelation for heavy metals, if needed, making sure > that the glutathione level is up before doing so. This process > might take quite a while, if the body burdens of > toxins are high. > > Rich > Hi Rich Thanks for keeping us up-to-date with the good work you are doing. As my Translactor Study just showed up with a trace of lindane but high DNA/RNA presumably I won't have the polymorphisms that you mention? Of course I did have mercury poisoning showing up 4 years ago but after safely removing all my amalgams and chelation with alpha lipoic acid it looks like that is no longer a problem for me. You might be interested to know that I am 2 weeks in to being treated with various herbs (which I make into a tea and take twice daily) by a Chinese medical doctor, he also knows about my diagnosis of borrelia plus this other problem that has shown up. Both he and Dr think that I have viral issues too and since starting the herbs I have been suffering with quite a swollen, red sore throat. It comes and goes but I don't feel ill and nothing seems to be developing - its been there on and off for around 10 days. My Chinese doctor was delighted when I told him about this effect saying that he is trying to get my immune system to start working better and that the sore throat is a good sign. Of course only time will tell but keep up with all the good work you are doing. I am still not sure whether I should be taking glutathione in some form because I tested normal for rbc glutathione. BW Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi Rich, Thank you for posting this excellent explanation of what most likely is going on within some of our disabled and dyfunctional bodies ravaged by this horrible disease that has robbed us of a normal life. I believe that my case of 18 years of being primarily bedridden, using a wheelchair, being able to walk only a few feet at a time, able to leave the house maybe one day a week if I'm lucky, weak, shaky, exhausted and in constant pain, fits the list of underlying causes that you discuss below. I wonder at this point if I will ever improve. I've gotten even weaker in the last two years, even though I'm doing what I can to help myself. Like so many here, over the years I've tried many doctors who were following the latest theories in how to help PWC's, but nothing has helped. Now we are finally getting to the deeper issues that have blocked any success for some of us. The tests that I've taken so far show problems with phase 2 liver detoxing, very high levels of mercury, viruses, very low blood flow suggesting heart output difficulties, dysfunction of most organs and systems, and inability to tolerate glutathione or whey suggesting methylation problems. And, now, there are a new group of tests that could be taken but no one knows whether PWC's with these complex problems can be helped. And, as you state below - how does one detox mercury without a detox system that works? That is a question that I asked on this group months ago. Your suggestions at the end of your letter are helpful and I will try them. I'm very glad that you are continuing to study CFIDS and report to us. Your letters about the research and results help tremendously. I was going to phone a new CFS doctor today and start another round of efforts to make some improvements but now I will want to ask first whether he is working on the problems below that you have discussed. Or, perhaps I should begin on my own by following your suggestions about eliminating mercury by building minerals, using a sauna and detoxing products before trying chelation. You've given more to consider. Thank you again, Olson " rvankonynen " wrote: > Here's a response I just sent to Marcia on the cfsfmresearch list, > in response to her request to be kept informed of what I've been > doing in CFS research lately: > > Hi, Marcia. > > Thanks for your interest in what I'm up to! > > These days I'm doing more thinking and writing than posting. I've > agreed to coauthor a paper on mitochondrial dysfunction in CFS with > Dr. Myhill and am working on that. Don't worry, if I come up with > anything I think is significant, I'll post it here as well. > > The glutathione depletion hypothesis does seem to fit quite a few > PWCs, and a few are able to raise glutathione by direct approaches, > using glutathione itself in various forms, or its precursor amino > acids, or both. Many, however, do not seem to be able to do this, > probably because of a vicious circle mechanism involving the earlier > parts of the sulfur metabolism, which is holding down the > glutathione and making CFS a chronic disorder. > > The autism--CFS pathogenesis parallel that I started emphasizing > last fall seems to be proving out. Quite a few PWCs who have low > glutathione have ordered the polymorphisms panel recommended by Dr. > Yasko, from http://www.testing4health.com. The early ones seem to > be coming back with the same polymorphisms as are seen in autism. > Some even have the CBS polymorphisms, characteristic of the most > seriously ill kids with autism. So I think that this vicious circle > hypothesis is going to cover a pretty big subset of PWCs. It > remains to be seen if the autism treatments to compensate for the > polymorphisms will break the vicious circle for these PWCs as well, > and allow their glutathione to come back up, as they do in autism. > It's still too early to comment much on that, though early signs are > good in the very few people I know of who are trying this, and > biochemical theory would seem to predict that it will work. > > I'm also tracking the results coming back, mostly to PWCs in the > U.K., from the ATP Profile test and the ATP/ADP translocator protein > test offered by BioLab Medical Unit (or Acumen) in the U.K. These > test results are clearly showing mitochondrial dysfunction in PWCs, > and the degree of it appears to correlate with the degree of > disability, according to Dr. Myhill's and Dr. McLaren 's > work. > > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease > now that involves mitochondrial dysfunction as the common > denominator for different subsets. Many PWCs do appear to have > glutathione depletion and a vicious circle involving the methylation > cycle or other earlier parts of the sulfur metabolism, as studied by > the autism people, as I've been emphasizing. Others may not have > this vicious circle, but may have ongoing mitochondrial dysfunction > for other reasons. Dr. wrote me that he sees many cases of > mitochondrial dysfunction that do not involve glutathione depletion. > > All the cells in the body (except red blood cells, type 2 skeletal > muscle cells and a few other cell types) have mitochondria. Dr. > 's test on neutrophils shows that the mitochondria of > neutrophils show dysfunction in CFS. If the neutrophils show this > problem (they have a lifetime of only a few days), then it must be a > problem for other, longer-lived cell types as well, since they will > have a longer time to accumulate toxins. > > In many cases in which there is mitochondrial dysfunction but not > glutathione depletion, I think the problem is chemical toxicity. > These people have polymorphisms in their detox system, as shown by > the Genovations Detoxigenomic profile. I think that polymorphisms > in the glutathione transferase enzymes are part of this, allowing > the glutathione level to stay up, but making the glutathione largely > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are > involved in many cases as well. Then these people were exposed to > significant amounts of any of a variety of chemical toxins, > including pharmaceuticals. Their bodies were not able to shed the > toxins because of their detox system polymorphisms, and the toxins > therefore built up. As the ATP Profile test is showing, a variety > of toxins can block enzymes in the mitochondria, producing > mitochondrial dysfunction. That's what I believe leads to the > symptoms of fatigue and many of the other symptoms of CFS. So again > we have a combination of a genetic predisposition > and " environmental " factors, but in these cases, the genetic > predisposition involves the detox system rather than the methylation > cycle. > > Borrelia have been found to deplete cysteine and glutathione, as I > posted last January, and I think that's the tie-in between CFS and > Lyme disease and the reason the symptom sets are so similar between > Lyme disease and CFS caused by other factors. Once you produce > ongoing mitochondrial dysfunction, by whatever mechanism, I think > you are going to have chronic fatigue, chronic pain and the rest of > the symptoms of CFS. > > It would be very interesting to see what the immune system > polymorphisms are in people with Lyme disease. This might answer > the question we have been kicking around for years, i.e. whether > some people are particularly susceptible to chronic Lyme disease > because of their genetic makeup. I don't currently know the answer > to this question. > > Some people unfortunately were born with significant polymorphisms > in both their detox system and their methylation cycle. This is a > bad combination. > > I've been happy to see the funded researchers reporting work on > polymorphisms lately. I hope this continues, and that they look at > the polymorphisms in the detox system and in the methylation cycle, > as well as in other systems involved in the early part of the > pathogenesis of CFS, including the stress response and > neurotransmitter systems (which the CDC has reported on lately), the > antioxidant enzyme system (including the glutathione system), and > the immune system. > > The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has > been emphasizing lately stem directly from mitochondrial > dysfunction, in my opinion. The viral infection in the heart in the > cases studied by Dr. Lerner results from immune suppression, which > is probably a result of glutathione depletion and methylation > cycle/folate metabolism block. Low cardiac output from either of > these causes leads to a lot of other problems, including poor > perfusion of the brain. > > I think the above basic framework will explain what's going on in > the bulk of the cases. There are probably some subsets that are > still not explained by the above, however. I guess that's " job > security " for us researhers, not that I need that at this point in > my life! > > Treating the people with the detox polymorphisms may be more > difficult than treating the ones with the autism-like polymorphisms > involving the methylation cycle and folate metabolism, etc. I think > it's important first to identify the toxins that are present. Then, > how do you get the toxins out, if you don't have a detox system that > can function properly? I think lowering the input of toxins is > number one, using clean air and water and organic foods, and > avoiding sources of toxins. Then I think building up the normal > detox system as much as possible is next, putting in sulfur- > containing substances as tolerated, starting with sulfate and > taurine if they are low. Then I think that passing substances > through the gut that will bind the specific types of toxins that are > present may help, including activated charcoal, cholestyramine, > bentonite, indigestible fiber, as appropriate to the toxins > present. Then careful use of saunas, making sure to replace > minerals and water. If the problem is metals, perhaps elevated (but > nontoxic) doses of the essential minerals will help to flush them > out. Then careful chelation for heavy metals, if needed, making sure > that the glutathione level is up before doing so. This process > might take quite a while, if the body burdens of > toxins are high. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Rich this is very interesting and a more complete hypothesis that makes sense. In terms of testing for detox--is that genova's detoxigomics (which I can't get unless I go to a new jersey doc...)...? What tests the p450 enzymes--? Anyway, I think I should add a few thoughts: 1) Chronic lyme is not just borrelia. Burdorfer (borrelia burgdorferi) discovered not only the spirochete but five other bugs in the tickgut, and that is being confirmed now by work by Eva Sapi, a biologist, in southern Connecticut. Therefore, to me, chronic lyme is chronic tickborne infection, multiple bugs, maybe multiple bites, and yes, then you get the downstream effects and they are bad. 2) Mitochondrial dysfunction is a big one, and I think its so in my case, which is why hyperbaric oxygen has been crucial to me, and helpful to others. I think babesia is a big bad one in this case. > > Hi, all. > > Here's a response I just sent to Marcia on the cfsfmresearch list, > in response to her request to be kept informed of what I've been > doing in CFS research lately: > > Hi, Marcia. > > Thanks for your interest in what I'm up to! > > These days I'm doing more thinking and writing than posting. I've > agreed to coauthor a paper on mitochondrial dysfunction in CFS with > Dr. Myhill and am working on that. Don't worry, if I come up with > anything I think is significant, I'll post it here as well. > > The glutathione depletion hypothesis does seem to fit quite a few > PWCs, and a few are able to raise glutathione by direct approaches, > using glutathione itself in various forms, or its precursor amino > acids, or both. Many, however, do not seem to be able to do this, > probably because of a vicious circle mechanism involving the earlier > parts of the sulfur metabolism, which is holding down the > glutathione and making CFS a chronic disorder. > > The autism--CFS pathogenesis parallel that I started emphasizing > last fall seems to be proving out. Quite a few PWCs who have low > glutathione have ordered the polymorphisms panel recommended by Dr. > Yasko, from http://www.testing4health.com. The early ones seem to > be coming back with the same polymorphisms as are seen in autism. > Some even have the CBS polymorphisms, characteristic of the most > seriously ill kids with autism. So I think that this vicious circle > hypothesis is going to cover a pretty big subset of PWCs. It > remains to be seen if the autism treatments to compensate for the > polymorphisms will break the vicious circle for these PWCs as well, > and allow their glutathione to come back up, as they do in autism. > It's still too early to comment much on that, though early signs are > good in the very few people I know of who are trying this, and > biochemical theory would seem to predict that it will work. > > I'm also tracking the results coming back, mostly to PWCs in the > U.K., from the ATP Profile test and the ATP/ADP translocator protein > test offered by BioLab Medical Unit (or Acumen) in the U.K. These > test results are clearly showing mitochondrial dysfunction in PWCs, > and the degree of it appears to correlate with the degree of > disability, according to Dr. Myhill's and Dr. McLaren 's > work. > > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease > now that involves mitochondrial dysfunction as the common > denominator for different subsets. Many PWCs do appear to have > glutathione depletion and a vicious circle involving the methylation > cycle or other earlier parts of the sulfur metabolism, as studied by > the autism people, as I've been emphasizing. Others may not have > this vicious circle, but may have ongoing mitochondrial dysfunction > for other reasons. Dr. wrote me that he sees many cases of > mitochondrial dysfunction that do not involve glutathione depletion. > > All the cells in the body (except red blood cells, type 2 skeletal > muscle cells and a few other cell types) have mitochondria. Dr. > 's test on neutrophils shows that the mitochondria of > neutrophils show dysfunction in CFS. If the neutrophils show this > problem (they have a lifetime of only a few days), then it must be a > problem for other, longer-lived cell types as well, since they will > have a longer time to accumulate toxins. > > In many cases in which there is mitochondrial dysfunction but not > glutathione depletion, I think the problem is chemical toxicity. > These people have polymorphisms in their detox system, as shown by > the Genovations Detoxigenomic profile. I think that polymorphisms > in the glutathione transferase enzymes are part of this, allowing > the glutathione level to stay up, but making the glutathione largely > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are > involved in many cases as well. Then these people were exposed to > significant amounts of any of a variety of chemical toxins, > including pharmaceuticals. Their bodies were not able to shed the > toxins because of their detox system polymorphisms, and the toxins > therefore built up. As the ATP Profile test is showing, a variety > of toxins can block enzymes in the mitochondria, producing > mitochondrial dysfunction. That's what I believe leads to the > symptoms of fatigue and many of the other symptoms of CFS. So again > we have a combination of a genetic predisposition > and " environmental " factors, but in these cases, the genetic > predisposition involves the detox system rather than the methylation > cycle. > > Borrelia have been found to deplete cysteine and glutathione, as I > posted last January, and I think that's the tie-in between CFS and > Lyme disease and the reason the symptom sets are so similar between > Lyme disease and CFS caused by other factors. Once you produce > ongoing mitochondrial dysfunction, by whatever mechanism, I think > you are going to have chronic fatigue, chronic pain and the rest of > the symptoms of CFS. > > It would be very interesting to see what the immune system > polymorphisms are in people with Lyme disease. This might answer > the question we have been kicking around for years, i.e. whether > some people are particularly susceptible to chronic Lyme disease > because of their genetic makeup. I don't currently know the answer > to this question. > > Some people unfortunately were born with significant polymorphisms > in both their detox system and their methylation cycle. This is a > bad combination. > > I've been happy to see the funded researchers reporting work on > polymorphisms lately. I hope this continues, and that they look at > the polymorphisms in the detox system and in the methylation cycle, > as well as in other systems involved in the early part of the > pathogenesis of CFS, including the stress response and > neurotransmitter systems (which the CDC has reported on lately), the > antioxidant enzyme system (including the glutathione system), and > the immune system. > > The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has > been emphasizing lately stem directly from mitochondrial > dysfunction, in my opinion. The viral infection in the heart in the > cases studied by Dr. Lerner results from immune suppression, which > is probably a result of glutathione depletion and methylation > cycle/folate metabolism block. Low cardiac output from either of > these causes leads to a lot of other problems, including poor > perfusion of the brain. > > I think the above basic framework will explain what's going on in > the bulk of the cases. There are probably some subsets that are > still not explained by the above, however. I guess that's " job > security " for us researhers, not that I need that at this point in > my life! > > Treating the people with the detox polymorphisms may be more > difficult than treating the ones with the autism-like polymorphisms > involving the methylation cycle and folate metabolism, etc. I think > it's important first to identify the toxins that are present. Then, > how do you get the toxins out, if you don't have a detox system that > can function properly? I think lowering the input of toxins is > number one, using clean air and water and organic foods, and > avoiding sources of toxins. Then I think building up the normal > detox system as much as possible is next, putting in sulfur- > containing substances as tolerated, starting with sulfate and > taurine if they are low. Then I think that passing substances > through the gut that will bind the specific types of toxins that are > present may help, including activated charcoal, cholestyramine, > bentonite, indigestible fiber, as appropriate to the toxins > present. Then careful use of saunas, making sure to replace > minerals and water. If the problem is metals, perhaps elevated (but > nontoxic) doses of the essential minerals will help to flush them > out. Then careful chelation for heavy metals, if needed, making sure > that the glutathione level is up before doing so. This process > might take quite a while, if the body burdens of > toxins are high. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Jill, I've been doing the hyperbaric for 4 months now and even tho I still feel about the same, I've noticed maybe a 5% increase in energy. For me that's something. From about 15% to 20% is a big change for me. jill1313 <jenbooks13@...> wrote: Rich this is very interesting and a more complete hypothesis that makes sense. In terms of testing for detox--is that genova's detoxigomics (which I can't get unless I go to a new jersey doc...)...? What tests the p450 enzymes--? Anyway, I think I should add a few thoughts: 1) Chronic lyme is not just borrelia. Burdorfer (borrelia burgdorferi) discovered not only the spirochete but five other bugs in the tickgut, and that is being confirmed now by work by Eva Sapi, a biologist, in southern Connecticut. Therefore, to me, chronic lyme is chronic tickborne infection, multiple bugs, maybe multiple bites, and yes, then you get the downstream effects and they are bad. 2) Mitochondrial dysfunction is a big one, and I think its so in my case, which is why hyperbaric oxygen has been crucial to me, and helpful to others. I think babesia is a big bad one in this case. > > Hi, all. > > Here's a response I just sent to Marcia on the cfsfmresearch list, > in response to her request to be kept informed of what I've been > doing in CFS research lately: > > Hi, Marcia. > > Thanks for your interest in what I'm up to! > > These days I'm doing more thinking and writing than posting. I've > agreed to coauthor a paper on mitochondrial dysfunction in CFS with > Dr. Myhill and am working on that. Don't worry, if I come up with > anything I think is significant, I'll post it here as well. > > The glutathione depletion hypothesis does seem to fit quite a few > PWCs, and a few are able to raise glutathione by direct approaches, > using glutathione itself in various forms, or its precursor amino > acids, or both. Many, however, do not seem to be able to do this, > probably because of a vicious circle mechanism involving the earlier > parts of the sulfur metabolism, which is holding down the > glutathione and making CFS a chronic disorder. > > The autism--CFS pathogenesis parallel that I started emphasizing > last fall seems to be proving out. Quite a few PWCs who have low > glutathione have ordered the polymorphisms panel recommended by Dr. > Yasko, from http://www.testing4health.com. The early ones seem to > be coming back with the same polymorphisms as are seen in autism. > Some even have the CBS polymorphisms, characteristic of the most > seriously ill kids with autism. So I think that this vicious circle > hypothesis is going to cover a pretty big subset of PWCs. It > remains to be seen if the autism treatments to compensate for the > polymorphisms will break the vicious circle for these PWCs as well, > and allow their glutathione to come back up, as they do in autism. > It's still too early to comment much on that, though early signs are > good in the very few people I know of who are trying this, and > biochemical theory would seem to predict that it will work. > > I'm also tracking the results coming back, mostly to PWCs in the > U.K., from the ATP Profile test and the ATP/ADP translocator protein > test offered by BioLab Medical Unit (or Acumen) in the U.K. These > test results are clearly showing mitochondrial dysfunction in PWCs, > and the degree of it appears to correlate with the degree of > disability, according to Dr. Myhill's and Dr. McLaren 's > work. > > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease > now that involves mitochondrial dysfunction as the common > denominator for different subsets. Many PWCs do appear to have > glutathione depletion and a vicious circle involving the methylation > cycle or other earlier parts of the sulfur metabolism, as studied by > the autism people, as I've been emphasizing. Others may not have > this vicious circle, but may have ongoing mitochondrial dysfunction > for other reasons. Dr. wrote me that he sees many cases of > mitochondrial dysfunction that do not involve glutathione depletion. > > All the cells in the body (except red blood cells, type 2 skeletal > muscle cells and a few other cell types) have mitochondria. Dr. > 's test on neutrophils shows that the mitochondria of > neutrophils show dysfunction in CFS. If the neutrophils show this > problem (they have a lifetime of only a few days), then it must be a > problem for other, longer-lived cell types as well, since they will > have a longer time to accumulate toxins. > > In many cases in which there is mitochondrial dysfunction but not > glutathione depletion, I think the problem is chemical toxicity. > These people have polymorphisms in their detox system, as shown by > the Genovations Detoxigenomic profile. I think that polymorphisms > in the glutathione transferase enzymes are part of this, allowing > the glutathione level to stay up, but making the glutathione largely > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are > involved in many cases as well. Then these people were exposed to > significant amounts of any of a variety of chemical toxins, > including pharmaceuticals. Their bodies were not able to shed the > toxins because of their detox system polymorphisms, and the toxins > therefore built up. As the ATP Profile test is showing, a variety > of toxins can block enzymes in the mitochondria, producing > mitochondrial dysfunction. That's what I believe leads to the > symptoms of fatigue and many of the other symptoms of CFS. So again > we have a combination of a genetic predisposition > and " environmental " factors, but in these cases, the genetic > predisposition involves the detox system rather than the methylation > cycle. > > Borrelia have been found to deplete cysteine and glutathione, as I > posted last January, and I think that's the tie-in between CFS and > Lyme disease and the reason the symptom sets are so similar between > Lyme disease and CFS caused by other factors. Once you produce > ongoing mitochondrial dysfunction, by whatever mechanism, I think > you are going to have chronic fatigue, chronic pain and the rest of > the symptoms of CFS. > > It would be very interesting to see what the immune system > polymorphisms are in people with Lyme disease. This might answer > the question we have been kicking around for years, i.e. whether > some people are particularly susceptible to chronic Lyme disease > because of their genetic makeup. I don't currently know the answer > to this question. > > Some people unfortunately were born with significant polymorphisms > in both their detox system and their methylation cycle. This is a > bad combination. > > I've been happy to see the funded researchers reporting work on > polymorphisms lately. I hope this continues, and that they look at > the polymorphisms in the detox system and in the methylation cycle, > as well as in other systems involved in the early part of the > pathogenesis of CFS, including the stress response and > neurotransmitter systems (which the CDC has reported on lately), the > antioxidant enzyme system (including the glutathione system), and > the immune system. > > The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has > been emphasizing lately stem directly from mitochondrial > dysfunction, in my opinion. The viral infection in the heart in the > cases studied by Dr. Lerner results from immune suppression, which > is probably a result of glutathione depletion and methylation > cycle/folate metabolism block. Low cardiac output from either of > these causes leads to a lot of other problems, including poor > perfusion of the brain. > > I think the above basic framework will explain what's going on in > the bulk of the cases. There are probably some subsets that are > still not explained by the above, however. I guess that's " job > security " for us researhers, not that I need that at this point in > my life! > > Treating the people with the detox polymorphisms may be more > difficult than treating the ones with the autism-like polymorphisms > involving the methylation cycle and folate metabolism, etc. I think > it's important first to identify the toxins that are present. Then, > how do you get the toxins out, if you don't have a detox system that > can function properly? I think lowering the input of toxins is > number one, using clean air and water and organic foods, and > avoiding sources of toxins. Then I think building up the normal > detox system as much as possible is next, putting in sulfur- > containing substances as tolerated, starting with sulfate and > taurine if they are low. Then I think that passing substances > through the gut that will bind the specific types of toxins that are > present may help, including activated charcoal, cholestyramine, > bentonite, indigestible fiber, as appropriate to the toxins > present. Then careful use of saunas, making sure to replace > minerals and water. If the problem is metals, perhaps elevated (but > nontoxic) doses of the essential minerals will help to flush them > out. Then careful chelation for heavy metals, if needed, making sure > that the glutathione level is up before doing so. This process > might take quite a while, if the body burdens of > toxins are high. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Rich, Glad to hear you are still at work on this. You might be interested in the following study and see if it clicks with any of the research you are doing: " _After microwave irradiation, the changes of pathological ultrastructure of rat cerebral cortex and hippocampus were observed by electron microscope, and mitochondrial transcription factor A (mtTFA) mRNA expression level were determined by RT-PCR. RESULTS: After 3 mW/cm(2) microwave irradiation for 0, 3, 24 h, mitochondrial ultrastructure and mtTFA mRNA expression level didn't significantly change in rat cerebral cortex and hippocampus. After 30 mW/cm(2) microwave irradiation for 0, 3, 24 h, mitochondrial ultrastructure obviously changed, mtTFA mRNA expression in rat hippocampus significantly increased by 67.00%, 80.00%, 30.00% respectively, and in rat cerebral cortex by 133.00%, 86.00%, 233.00% respectively._ " http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? db=pubmed & cmd=Retrieve & dopt=Abstract & list_uids=15130438 & query_hl=3 & itool=pub med_docsum regards, paul > > > > Hi, all. > > > > Here's a response I just sent to Marcia on the cfsfmresearch list, > > in response to her request to be kept informed of what I've been > > doing in CFS research lately: > > > > I've agreed to coauthor a paper on mitochondrial dysfunction in CFS with > > Dr. Myhill and am working on that. > > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease > > now that involves mitochondrial dysfunction as the common > > denominator for different subsets. Many PWCs do appear to have > > glutathione depletion and a vicious circle involving the methylation > > cycle or other earlier parts of the sulfur metabolism, as studied by > > the autism people, as I've been emphasizing. Others may not have > > this vicious circle, but may have ongoing mitochondrial dysfunction > > for other reasons. Dr. wrote me that he sees many cases of > > mitochondrial dysfunction that do not involve glutathione depletion. > > > > All the cells in the body (except red blood cells, type 2 skeletal > > muscle cells and a few other cell types) have mitochondria. Dr. > > 's test on neutrophils shows that the mitochondria of > > neutrophils show dysfunction in CFS. If the neutrophils show this > > problem (they have a lifetime of only a few days), then it must be a > > problem for other, longer-lived cell types as well, since they will > > have a longer time to accumulate toxins. > > > > In many cases in which there is mitochondrial dysfunction but not > > glutathione depletion, I think the problem is chemical toxicity. > > These people have polymorphisms in their detox system, as shown by > > the Genovations Detoxigenomic profile. I think that polymorphisms > > in the glutathione transferase enzymes are part of this, allowing > > the glutathione level to stay up, but making the glutathione largely > > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are > > involved in many cases as well. Then these people were exposed to > > significant amounts of any of a variety of chemical toxins, > > including pharmaceuticals. Their bodies were not able to shed the > > toxins because of their detox system polymorphisms, and the toxins > > therefore built up. As the ATP Profile test is showing, a variety > > of toxins can block enzymes in the mitochondria, producing > > mitochondrial dysfunction. That's what I believe leads to the > > symptoms of fatigue and many of the other symptoms of CFS. So again > > we have a combination of a genetic predisposition > > and " environmental " factors, but in these cases, the genetic > > predisposition involves the detox system rather than the methylation > > cycle. > > > > Once you produce > > ongoing mitochondrial dysfunction, by whatever mechanism, I think > > you are going to have chronic fatigue, chronic pain and the rest of > > the symptoms of CFS.> > > > Rich > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi, . I don't think I mentioned emotional stress in connection with autistic infants. As far as I have been able to find out, the main demands on glutathione in these children have been due to toxins such as mercury and to live viruses in vaccines. However, if an infant is not properly cared for, as in being fed, or being held and having human contact, or being kept at a comfortable temperature, I can imagine that it could experience what we could call emotional stress as well. I recall the stories from the orphanages in Romania about the babies who were not held by adults, and it apparently did some emotional damage to them. So I think that's possible in infants as well as in adults. In adults who develop CFS, I think there is a wider range of factors that can place demands on glutathione than there is in the autistic children. We've been through that many times before, but if you want to review what I've said about it, I would refer you to my paper, which gives all the references to the published work on which I based my discussion of this. The paper can be found at the following url: http://www.cfsresearch.org/cfs/research/treatment/15.htm From the standpoint of the resulting biochemistry, it doesn't matter what causes the glutathione level to go down. Once it does, it triggers the vicious circle mechanism involving the genetic variations in enzymes higher up in the sulfur metabolism, and the person becomes trapped in a chronic illness. If the person is under about 3 years of age when this happens, he or she has autism. If he or she is older, it's CFS. The main difference is that in autism the brain has not yet fully developed, so there is an additional set of symptoms associated with autism, which is very debilitating and characteristic. But beyond these characteristic symptoms of autism, the rest appears to be pretty much the same between these two disorders. This is really a pretty remarkable thing, which is not yet widely known. Rich > > > Some people unfortunately were born with significant polymorphisms > > in both their detox system and their methylation cycle. This is a > > bad combination. > > > Rich, obviously, it is ridiculous to accuse autistic infants of > having their illness result from an inordinate burden of emotional > stress which is not present in undue or sometimes nonexistent > amounts. > > If an autistic child has any incapacity to deal with normal levels > of emotional stress, it would be the result of the illness and not > the cause. > > Everytime someone reverses the cause-effect relationship and > asserts that the cart is driving the horse, they are missing the > point that just because two factors are associated - one is not > simply free to reverse the order. > > A cart can only push the horse if something ELSE is seriously wrong > and the horse loses control. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi, Pam. Given that your glutathione level is normal, I don't think you have serious polymorphisms associated with the methylation cycle. You may have some in your detox system, though. That might explain why the mercury was able to build up in your body. To look at them, you could get a Genovations Detoxigenomic profile done. Thanks for the information about your Chinese herbal treatments. I hope they will be able to jump-start your immune system. Rich > Hi Rich > > Thanks for keeping us up-to-date with the good work you are doing. > As my Translactor Study just showed up with a trace of lindane but > high DNA/RNA presumably I won't have the polymorphisms that you > mention? Of course I did have mercury poisoning showing up 4 years > ago but after safely removing all my amalgams and chelation with > alpha lipoic acid it looks like that is no longer a problem for me. > > You might be interested to know that I am 2 weeks in to being > treated with various herbs (which I make into a tea and take twice > daily) by a Chinese medical doctor, he also knows about my diagnosis > of borrelia plus this other problem that has shown up. Both he and > Dr think that I have viral issues too and since starting the > herbs I have been suffering with quite a swollen, red sore throat. > It comes and goes but I don't feel ill and nothing seems to be > developing - its been there on and off for around 10 days. My > Chinese doctor was delighted when I told him about this effect > saying that he is trying to get my immune system to start working > better and that the sore throat is a good sign. > > Of course only time will tell but keep up with all the good work you > are doing. I am still not sure whether I should be taking > glutathione in some form because I tested normal for rbc glutathione. > > BW > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi, Sandy. It's good to hear from you. I really hope that something will work to get the toxins out of your body. I think that's your central issue. Rich > > Hi Rich, > > Thank you for posting this excellent explanation of what most likely > is going on within some of our disabled and dyfunctional bodies > ravaged by this horrible disease that has robbed us of a normal life. > > I believe that my case of 18 years of being primarily bedridden, > using a wheelchair, being able to walk only a few feet at a time, > able to leave the house maybe one day a week if I'm lucky, weak, > shaky, exhausted and in constant pain, fits the list of underlying > causes that you discuss below. I wonder at this point if I will ever > improve. I've gotten even weaker in the last two years, even though > I'm doing what I can to help myself. > > Like so many here, over the years I've tried many doctors who were > following the latest theories in how to help PWC's, but nothing has > helped. Now we are finally getting to the deeper issues that have > blocked any success for some of us. > > The tests that I've taken so far show problems with phase 2 liver > detoxing, very high levels of mercury, viruses, very low blood flow > suggesting heart output difficulties, dysfunction of most organs and > systems, and inability to tolerate glutathione or whey suggesting > methylation problems. And, now, there are a new group of tests that > could be taken but no one knows whether PWC's with these complex > problems can be helped. > > And, as you state below - how does one detox mercury without a detox > system that works? That is a question that I asked on this group > months ago. Your suggestions at the end of your letter are helpful > and I will try them. > > I'm very glad that you are continuing to study CFIDS and report to > us. Your letters about the research and results help tremendously. > I was going to phone a new CFS doctor today and start another round > of efforts to make some improvements but now I will want to ask first > whether he is working on the problems below that you have discussed. > Or, perhaps I should begin on my own by following your suggestions > about eliminating mercury by building minerals, using a sauna and > detoxing products before trying chelation. You've given more to > consider. > > Thank you again, > Olson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi, Jill. Yes, the cytochrome P450 enzyme polymorphisms are on the Genovations Detoxigenomic profile. I'm sorry that you have to go out of state for it. Thanks for sharing your thoughts. Rich > > Rich this is very interesting and a more complete hypothesis that > makes sense. > > In terms of testing for detox--is that genova's detoxigomics (which I > can't get unless I go to a new jersey doc...)...? What tests the p450 > enzymes--? > > Anyway, I think I should add a few thoughts: > > 1) Chronic lyme is not just borrelia. Burdorfer (borrelia burgdorferi) > discovered not only the spirochete but five other bugs in the tickgut, > and that is being confirmed now by work by Eva Sapi, a biologist, in > southern Connecticut. Therefore, to me, chronic lyme is chronic > tickborne infection, multiple bugs, maybe multiple bites, and yes, > then you get the downstream effects and they are bad. > > 2) Mitochondrial dysfunction is a big one, and I think its so in my > case, which is why hyperbaric oxygen has been crucial to me, and > helpful to others. I think babesia is a big bad one in this case. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 > > Hi, Pam. > > Given that your glutathione level is normal, I don't think you have > serious polymorphisms associated with the methylation cycle. You > may have some in your detox system, though. That might explain why > the mercury was able to build up in your body. > Rich > > > Let's not forget that " RNase dysfunction impairs Mercury clearance " which was presented at a past AACFS conference, (It's on Cort's website). How many people know this? very few. Al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 " rvankonynen " <richvank@...> wrote: > > Hi, . However, if an infant is not properly cared for, as in being fed, or being held and having human contact, or being kept at a comfortable temperature, I can imagine that it could experience what we could call emotional stress as well. I recall the stories from the orphanages in Romania about the babies who were not held by adults, and it apparently did some emotional damage to them. So I think that's possible in infants as well as in adults. > When you take a healthy - happy baby in for the MMR and come home with an autistic child - emotional factors played no part in the onset and cannot be implicated. Why do you always have to throw in a little jab about stress playing a part even though it is only an associative variable that many of us didnt' have? Don't you know what we've been through with this? It's like having the ER doc write in your chart that " Bad driving is a factor " and you say " But not in my case. I was sitting at a stoplight and got blindsided by a drunk driver " . And the ER doc says " You cannot ignore that bad driving is a factor in most accidents, so it goes into the official report as a possible cause " If lack of stress doesn't ward off the illness, then the illness just plain doesn't care if the victim is stressed or not. Might as well say that being left-handed is a factor except for those people who are right-handed, in which case, being right-handed is the more important factor. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Cort, I went to school in a Redwood Forest too - UCSC. I finally graduated in 1988. I don't think they had cell phone towers on campus back then. paul Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Just to be sure I understand correctly, Rich: If I get the RBC test for glutathione and there is no deficiency, I skip the genetic testing for the SNPS related to autism and instead test for detox polymorphisms. And that would be done by Genovations? Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 On Jul 11, 2006, at 12:04 AM, Doyon wrote: > Cort, > > I went to school in a Redwood Forest too - UCSC. I finally graduated > in 1988. I don't think they had cell phone towers on campus back > then. My husband's a Slug, too. BA in Computer Science, 1983. And, yes, he's wified the house from attic to basement. An ubergeek can do no less. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi, . Sorry, I'm not trying to irritate you. I'm just trying to keep my mind open to possibilities. In both CFS and autism, the population of patients is heterogeneous. Not all have the same experiences or the same causes for their glutathione depletion, if it is indeed depleted. As I've said in past, I'm willing to believe that emotional stress was not a factor in your onset of CFS. You have reported lots of evidence for mold sensitivity in your case. However, I also have files full of reports from PWCs who meet the Fukuda et al. definition for CFS and who have written me that emotional stress was a very big factor in their CFS onset. There have also been many reports about that on this list from people here. I understand that you don't believe these folks have the same disorder that you do, but under the current case definition, they are PWCs nevertheless, and I am trying to help all of them and you as well, so I need to keep my mind open to the bigger picture. , we have interacted on various lists for a long time, and though we don't always agree on everything, I consider myself to be your friend. I hope that at some point you will be able to put some of the unpleasant things that have happened to you in the past behind you, count the blessings that you do have today, broaden your perspective to include others with different problems, and look toward the future. I don't say this to minimize what you've been through, which I agree was pretty abysmal. I say it because I think it would be in your best interest. Believe it or not, the person who suffers most over these past wrongs that you continue to review is you, not those you hold responsible for them. If you could bring yourself to forgive and get on with your life, I think you would personally benefit a great deal, both in terms of personal happiness and your long-term health as well. And you might even be able to win people more easily to your point of view about the uniqueness of the original disorder at Incline Village and how it differs from what is included in the current case definition. Rich > Why do you always have to throw in a little jab about stress playing > a part even though it is only an associative variable that many of us > didnt' have? > Don't you know what we've been through with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hey guys, I'm in Santa Cruz, too. For 35 years now. Are you still here? Mercuria <mercuria@...> wrote: On Jul 11, 2006, at 12:04 AM, Doyon wrote: > Cort, > > I went to school in a Redwood Forest too - UCSC. I finally graduated > in 1988. I don't think they had cell phone towers on campus back > then. My husband's a Slug, too. BA in Computer Science, 1983. And, yes, he's wified the house from attic to basement. An ubergeek can do no less. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi, Adrienne. Yes, that's what I would suggest. If your glutathione is normal, I would not suspect that you have serious polymorphism issues involving your methylation cycle. If you turn out to have detox polymorphisms, and if you have other reasons to believe that chemical toxins are a problem for you, such as known exposures just prior to the onset of your illness, or multiple chemical sensitivities, or past sensitivities to pharmaceuticals, then you might benefit from trying to figure out what toxins you have in your body. Depending on what they are, you might be able to use specific methods to pull them out. For heavy metals, I recommend the DMSA-provoked 6-hour urine collection offered by Doctors Data Labs (but make sure your glutathione level is up before you run this test). For organic toxins, I suggest the tests offered by http://www.nmslab.com in Pennsylvania. You can talk to them about which tests would be most appropriate, depending on your known or suspected exposures. If it's feasible for you to FedEx blood samples to BioLab Medical Unit in London, then the Translocator Protein test would be helpful in finding out what toxins are blocking your mitochondria. I think it would be best to run the ATP Profile test, also, to measure different aspects of your mitochondrial function. The samples must get to Biolab within 48 hours, and they must not be allowed to freeze on the way over, as in the cargo hold of an airliner at altitude. You can contact Biolab and FedEx for more details. Rich > > Just to be sure I understand correctly, Rich: If I get the RBC test for glutathione and there is no deficiency, I skip the genetic testing for the SNPS related to autism and instead test for detox polymorphisms. And that would be done by Genovations? > Adrienne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 On Jul 11, 2006, at 8:23 AM, Edy Rayfield wrote: > Hey guys, I'm in Santa Cruz, too. For 35 years now. Are you > still here? > > Mercuria <mercuria@...> wrote: > On Jul 11, 2006, at 12:04 AM, Doyon wrote: > >> Cort, >> >> I went to school in a Redwood Forest too - UCSC. I finally graduated >> in 1988. I don't think they had cell phone towers on campus back >> then. > > My husband's a Slug, too. BA in Computer Science, 1983. And, yes, > he's wified the house from attic to basement. An ubergeek can do no > less. We settled in Half Moon Bay for 18 years, but moved to Vancouver, BC two and a half years ago. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Interesting! A lot of people from SC - the liberal capital of the US - on this list it seems. I left in 88 for Japan and have been here for over 18 years. paul > > > Cort, > > > > I went to school in a Redwood Forest too - UCSC. I finally graduated > > in 1988. I don't think they had cell phone towers on campus back > > then. > > My husband's a Slug, too. BA in Computer Science, 1983. And, yes, > he's wified the house from attic to basement. An ubergeek can do no > less. > > Sara > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Sara, My son lives in Vancouver when he is not in China or NYC. There is an excellent doctor there should you need one. Email me off list if you want the name or if I haven't already sent you it. I have such a good memory!!! a Carnes Pj7@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Rich, I should mind my own business but.. I don't think meant his comment in any way as personal. He is angry at any mention of stress as a cause, and so am I. Yes, stress may be a trigger. A trigger is very different from a cause. If you shoot a gun the trigger is only the thing that sets the bullet going. The bullet is the cause. I can accept genetic issues, mold issues, toxin issues and you know I accept certain types of infection, but stress? Nope, it's no more than the trigger. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 On Jul 11, 2006, at 10:08 AM, a Carnes wrote: > Sara, > > My son lives in Vancouver when he is not in China or NYC. There is an > excellent doctor there should you need one. Email me off list if > you want > the name or if I haven't already sent you it. I have such a good > memory!!! You have, thanks. He's a naturopath....I think I've still got it on file. Sara Quote Link to comment Share on other sites More sharing options...
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