Hi, all.
Here's a repost of something I just posted to the Yahoo CFS_Yasko group, and which may be of interest to people here, also:
I want to express some thoughts on the methylation treatment for what they are worth, and would welcome your opinions and experiences related to these comments.
First, as many of you know, back in 1999 I first became aware of glutathione depletion in CFS from talks given by Dr. Cheney. I did quite a bit of studying to see what glutathione was all about, and I convinced myself that many or most of the aspects of CFS could be explained by glutathione depletion.
Over the next five years or so, I encouraged people who had CFS to try to raise their glutathione levels in various ways. Many of them reported that this was beneficial to them, though if they stopped boosting glutathione, their situation relapsed to what it was before. So it was only a temporary fix. And there were others who were made worse temporarily by boosting glutathione, and could not tolerate it.
I became convinced by the fall of 2004 that there must be a vicious circle mechanism that was holding down glutathione, but I didn't know what it was.
Then in December of 2004, S. Jill James et al. published an autism research paper in which they found that glutathione was also depleted in autism, and that this depletion was linked to a dysfunction in the methylation cycle, which is located upstream in the sulfur metabolism from glutathione synthesis. In addition, they found that treating to lift the methylation cycle partial block also caused glutathione to come up automatically.
I realized at that point that the same thing must be going on in CFS.
So I began encouraging people with CFS to do treatments to lift a partial methylation cycle block. Over the course of the next few years, we accumulated evidence that this mechanism is in fact present in most people with CFS, and that these types of treatments were significantly helpful to about two thirds of the PWCs who tried them.
A small number of people have reported to be essentially completely recovered as a result of this treatment. However, most have experienced significant benefit, but are not completely recovered, and some have been doing these types of treatments for over three years now.
About a third of the people have reported either that they could not tolerate the treatments, or that they have not experienced any benefit from them.
Among those who have not been able to tolerate the treatments, it appears that excitotoxicity has been one of the main problems. This leads to insomnia, anxiety, hypersensitivity of the senses, and a constantly "wired" feeling.
In recent months I have been trying to understand how to improve this situation, and I want to share some more thoughts on that.
First, for the people who can tolerate the treatments but do not experience benefits from them, I suspect that the likely causes are that the methylation cycle and related pathways do not have all the nutrients they need to come back up to normal operation. These include amino acids (especially methionine, serine, glycine, glutamine, and cysteine), vitamins (especially the other B vitamins and vitamin C), and certain minerals (especially zinc, copper, magnesium, manganese, selenium and molybdenum). These deficiencies could be at least partly caused by dysfunction of the digestive system, and I think that there is a lot of potential in working to fix the gut problems. I think the biofilm treatments and Dr. de Meirleir's most recent gut work are things we should pay attention to here. I think the KPU or HPU that Dr. Klinghardt has emphasized comes in here, too, in some cases, depleting zinc, B6 and other nutrients.
For people who experience severe excitotoxicity and thus cannot tolerate the treatments, I suspect that this is caused by a temporary further depletion of glutathione as more of the homocysteine is converted back to methionine, and less is available for making cysteine and glutathione.
I recently read Dr. Amy's article on excitotoxicity in the publications section of her website. She has some interesting ideas there, and I think that her discussion of the metabolism of glutamate in the brain shows where the main cause of excitotoxicity on this type of treatment lies. Normally, glutamate is secreted by neurons into their synapse with other neurons, serving as an excitatory neurotransmitter. The astrocytes are then supposed to import the glutamate, convert it to glutamine, and send it back to the neurons to be converted to glutamate and to be used again as a neurotransmitter. But this importation and conversion requires energy in the form of ATP, and I think that's where the problem arises. If glutathione becomes more depleted, the mitochondria of the astrocytes will be less able to produce ATP at normal rates, because of the oxidative stress that will arise, partially blocking the Krebs cycle and the respiratory chain. So I think there is a good basis for suspecting that the temporary glutathione depletion that occurs when this treatment is used is what is responsible for the rise in excitotoxicity.
If this is true, then it would seem that boosting glutathione while doing the methylation cycle treatments would help this situation. There are lots of ways to try to do this. I know that some people have been nebulizing glutathione, and some have been using liposomal forms of glutathione. There are other ways as well. For people who can tolerate glutathione boosting, this may help to calm the excitotoxicity when doing methylation cycle treatments.
For people who have experienced some benefits, but have then plateaued and have not had much improvement for a long time, I suspect that the problem is that there are factors that are preventing glutathione from coming up, or are preventing the methylation cycle from coming up, or both. So far, the people in this situation who have repeated the methylation pathways panel offered by Health Diagnostics and Research Institute (formerly Vitamin Diagnostics) have reported that their results on this panel have still not normalized. That's why I suspect that something is preventing recovery of this part of the metabolism in these people.
So what is it? I think the major suspects are things known to deplete glutathione. These include mold toxins, Borrelia bacteria (Lyme disease), and heavy metals, such as mercury. We don't know yet about how important XMRV is in CFS, but this may also be a possibility.
If these factors are indeed holding down glutathione, then I suspect that they will need to be dealt with directly before the methylation cycle treatments will be successful in restoring the methylation cycle and the folate and glutathione levels.
I have just heard from Lisa (slayadragon) that when she and another person have dealt with other issues, including mold toxins, they have then found that the methylation treatments have been much more effective in helping them to detox. Again, I think this suggests that other impediments to raising glutathione may need to be dealt with first.
Along this same line, the women who were treated in the study that Dr. Neil Nathan and I carried out had already been treated for a variety of other issues before starting the methylation treatments. These issues included mold illness, Lyme disease, and heavy metal toxicity.
In addition, the people who have reported essentially complete recovery from these treatments have also reported that they did a number of other treatments beforehand, some of them being antiviral treatments.
So I think there are bits and pieces of evidence that support this line of thinking.
One other thing that occurs to me is that this may be a major difference between CFS in adults and autism in children. The children with autism are of course much younger, in general. This being the case, they have had much less time to accumulate toxins and infections than have the adults. They also don't have amalgam fillings in their baby teeth. The really young ones have probably not had as much possible exposure to tick bites as the adults. The point is that the adults (especially those who have been ill with CFS for many years) may have many more impediments to the success of these treatments than the young children with autism, and they may need more additional treatments to address them specifically.
I would be interested in your thoughts about these things. Does this seem to make sense in the light of your experiences?
Best regards,
Rich
Here's a repost of something I just posted to the Yahoo CFS_Yasko group, and which may be of interest to people here, also:
I want to express some thoughts on the methylation treatment for what they are worth, and would welcome your opinions and experiences related to these comments.
First, as many of you know, back in 1999 I first became aware of glutathione depletion in CFS from talks given by Dr. Cheney. I did quite a bit of studying to see what glutathione was all about, and I convinced myself that many or most of the aspects of CFS could be explained by glutathione depletion.
Over the next five years or so, I encouraged people who had CFS to try to raise their glutathione levels in various ways. Many of them reported that this was beneficial to them, though if they stopped boosting glutathione, their situation relapsed to what it was before. So it was only a temporary fix. And there were others who were made worse temporarily by boosting glutathione, and could not tolerate it.
I became convinced by the fall of 2004 that there must be a vicious circle mechanism that was holding down glutathione, but I didn't know what it was.
Then in December of 2004, S. Jill James et al. published an autism research paper in which they found that glutathione was also depleted in autism, and that this depletion was linked to a dysfunction in the methylation cycle, which is located upstream in the sulfur metabolism from glutathione synthesis. In addition, they found that treating to lift the methylation cycle partial block also caused glutathione to come up automatically.
I realized at that point that the same thing must be going on in CFS.
So I began encouraging people with CFS to do treatments to lift a partial methylation cycle block. Over the course of the next few years, we accumulated evidence that this mechanism is in fact present in most people with CFS, and that these types of treatments were significantly helpful to about two thirds of the PWCs who tried them.
A small number of people have reported to be essentially completely recovered as a result of this treatment. However, most have experienced significant benefit, but are not completely recovered, and some have been doing these types of treatments for over three years now.
About a third of the people have reported either that they could not tolerate the treatments, or that they have not experienced any benefit from them.
Among those who have not been able to tolerate the treatments, it appears that excitotoxicity has been one of the main problems. This leads to insomnia, anxiety, hypersensitivity of the senses, and a constantly "wired" feeling.
In recent months I have been trying to understand how to improve this situation, and I want to share some more thoughts on that.
First, for the people who can tolerate the treatments but do not experience benefits from them, I suspect that the likely causes are that the methylation cycle and related pathways do not have all the nutrients they need to come back up to normal operation. These include amino acids (especially methionine, serine, glycine, glutamine, and cysteine), vitamins (especially the other B vitamins and vitamin C), and certain minerals (especially zinc, copper, magnesium, manganese, selenium and molybdenum). These deficiencies could be at least partly caused by dysfunction of the digestive system, and I think that there is a lot of potential in working to fix the gut problems. I think the biofilm treatments and Dr. de Meirleir's most recent gut work are things we should pay attention to here. I think the KPU or HPU that Dr. Klinghardt has emphasized comes in here, too, in some cases, depleting zinc, B6 and other nutrients.
For people who experience severe excitotoxicity and thus cannot tolerate the treatments, I suspect that this is caused by a temporary further depletion of glutathione as more of the homocysteine is converted back to methionine, and less is available for making cysteine and glutathione.
I recently read Dr. Amy's article on excitotoxicity in the publications section of her website. She has some interesting ideas there, and I think that her discussion of the metabolism of glutamate in the brain shows where the main cause of excitotoxicity on this type of treatment lies. Normally, glutamate is secreted by neurons into their synapse with other neurons, serving as an excitatory neurotransmitter. The astrocytes are then supposed to import the glutamate, convert it to glutamine, and send it back to the neurons to be converted to glutamate and to be used again as a neurotransmitter. But this importation and conversion requires energy in the form of ATP, and I think that's where the problem arises. If glutathione becomes more depleted, the mitochondria of the astrocytes will be less able to produce ATP at normal rates, because of the oxidative stress that will arise, partially blocking the Krebs cycle and the respiratory chain. So I think there is a good basis for suspecting that the temporary glutathione depletion that occurs when this treatment is used is what is responsible for the rise in excitotoxicity.
If this is true, then it would seem that boosting glutathione while doing the methylation cycle treatments would help this situation. There are lots of ways to try to do this. I know that some people have been nebulizing glutathione, and some have been using liposomal forms of glutathione. There are other ways as well. For people who can tolerate glutathione boosting, this may help to calm the excitotoxicity when doing methylation cycle treatments.
For people who have experienced some benefits, but have then plateaued and have not had much improvement for a long time, I suspect that the problem is that there are factors that are preventing glutathione from coming up, or are preventing the methylation cycle from coming up, or both. So far, the people in this situation who have repeated the methylation pathways panel offered by Health Diagnostics and Research Institute (formerly Vitamin Diagnostics) have reported that their results on this panel have still not normalized. That's why I suspect that something is preventing recovery of this part of the metabolism in these people.
So what is it? I think the major suspects are things known to deplete glutathione. These include mold toxins, Borrelia bacteria (Lyme disease), and heavy metals, such as mercury. We don't know yet about how important XMRV is in CFS, but this may also be a possibility.
If these factors are indeed holding down glutathione, then I suspect that they will need to be dealt with directly before the methylation cycle treatments will be successful in restoring the methylation cycle and the folate and glutathione levels.
I have just heard from Lisa (slayadragon) that when she and another person have dealt with other issues, including mold toxins, they have then found that the methylation treatments have been much more effective in helping them to detox. Again, I think this suggests that other impediments to raising glutathione may need to be dealt with first.
Along this same line, the women who were treated in the study that Dr. Neil Nathan and I carried out had already been treated for a variety of other issues before starting the methylation treatments. These issues included mold illness, Lyme disease, and heavy metal toxicity.
In addition, the people who have reported essentially complete recovery from these treatments have also reported that they did a number of other treatments beforehand, some of them being antiviral treatments.
So I think there are bits and pieces of evidence that support this line of thinking.
One other thing that occurs to me is that this may be a major difference between CFS in adults and autism in children. The children with autism are of course much younger, in general. This being the case, they have had much less time to accumulate toxins and infections than have the adults. They also don't have amalgam fillings in their baby teeth. The really young ones have probably not had as much possible exposure to tick bites as the adults. The point is that the adults (especially those who have been ill with CFS for many years) may have many more impediments to the success of these treatments than the young children with autism, and they may need more additional treatments to address them specifically.
I would be interested in your thoughts about these things. Does this seem to make sense in the light of your experiences?
Best regards,
Rich
