Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Is The Puzzle of Autism the best single source of information on the program? Do you think that Dr. Amy will write a book, focused on CFS, in the future? THANK YOU!!!> > Hi all. > > I want to mention some more evidence that suggests that this > hypothesis is relevant to CFS. > > Carnitine--There are a number of studies showing that this is low in > CFS, and that supplementing it helps some. Carnitine requires > methylation for its synthesis, so a deficit in methylation capacity > would explain the low carnitine in CFS. > > Coenzyme Q10--Two studies have found that supplementing this is also > helpful in CFS. Co Q10 also requires methylation for its synthesis. > Again, a methylation deficit would explain low Co Q10. > > Vitamin B12--Regland et al. gave hydroxocobalamin shots (1000 > micrograms) weekly to 10 female PWCs who had low B12 and high > homocysteine in their spinal fluid. They found that the ones who did > not have an MTHFR polymorphism were helped more by the B12, > presumably because their methionine synthase operation was not > hindered by a shortage of 5-methyltetrahydrofolate in addition to a > shortage of B12. All of this implicates the methylation cycle in the > pathogenesis of CFS. > > Folinic acid--There's a new study (Lundell et al., 2006) showing that > 81% of 58 CFS patients experienced subjective improvement of symptoms > after taking folinic acid. This again implicates the methylation > cycle, which is intimately linked to the folate cycle at methionine > synthase. > > The evidence seems to keep piling up. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 I have not started any methylation cycle stuff, but am about ready to consider it, as I finished some major projects. Thursday at my doctor's office a woman was getting the Kane protocol--IV phosphatidyl choline/glutathione in a push. I asked why. She said, " I have autism. " I asked if it was Asperger's (she seemed very high functioning) and she said yes. I asked if she was working on her methylation cycle and she said yes, years ago she had figured out her blood tests were off and had contacted a top expert at a university hospital here who is now dead, who called her to come in the next day, and put her on leucovorin (folinic acid). She said, it traced a line of fire down her throat and lit up her brain (interesting description) and she knew she was on the right track. She sees Dr Feingold in Westchester, who is now a DAN! style doc. I know Dr. Feingold from my hyperbaric days, I didn't get to know her well, but she is probably a competent DAN! doc. (The doctor I was seeing for hyperbaric, Dr Kopelson, has since retired. I liked him a lot). In any case, this woman said her neuro and immune symptoms are so improved she may go back to work. She has been at this for years however. She used to get frequent infections. She said, " All that went away. " I still think that designer pathogens like lyme, which have mycotoxins and create fungal issues/sensitivities for some of us, are hard to deal with, period. So I think that combining methylation adjuncts with anti-bacterial and anti-fungal substances and immune boosters is wise. I should also add that for a few weeks, I was without my 2.5 grams of IVIG that I get weekly (it was delayed) and I entirely skipped my IV vitamin/mineral/glutathione last week, so I was without that for two weeks. I noticed a huge and horrible difference. Probably the combination of vitamins, minerals like magnesium, glutathione chaser & the IVIG all together are synergistic. But anyway, since I usually get a glutathione chaser every week, it was only after skipping for two weeks that I could feel the difference when the glutathione went into the IV bag. I had that " glad " feeling in my body's cells that I initially had when I first was getting it. Although the presumption is that IV glutathione is quickly used up and doesn't get into the cells, I have to disagree with this by my clinical experience. I feel my whole body respond to it, and it must fix something for more than just an hour. In addition, although I am CBS upregulated and supposedly this IV glutathione would add to toxic sulfur metabolites, I find it really useful and important for me and don't notice bad side effects. Not sure what to say about that in terms of theory. Sometimes clinical experience counts. One of my concerns however *is* that the methylation cycle supplements all have fillers. I am very sensitive to fillers. They alone can make me sick. There seems to be absolutely no way to get compounded pure versions of folapro or bh4. > > Hi all. > > I want to mention some more evidence that suggests that this > hypothesis is relevant to CFS. > > Carnitine--There are a number of studies showing that this is low in > CFS, and that supplementing it helps some. Carnitine requires > methylation for its synthesis, so a deficit in methylation capacity > would explain the low carnitine in CFS. > > Coenzyme Q10--Two studies have found that supplementing this is also > helpful in CFS. Co Q10 also requires methylation for its synthesis. > Again, a methylation deficit would explain low Co Q10. > > Vitamin B12--Regland et al. gave hydroxocobalamin shots (1000 > micrograms) weekly to 10 female PWCs who had low B12 and high > homocysteine in their spinal fluid. They found that the ones who did > not have an MTHFR polymorphism were helped more by the B12, > presumably because their methionine synthase operation was not > hindered by a shortage of 5-methyltetrahydrofolate in addition to a > shortage of B12. All of this implicates the methylation cycle in the > pathogenesis of CFS. > > Folinic acid--There's a new study (Lundell et al., 2006) showing that > 81% of 58 CFS patients experienced subjective improvement of symptoms > after taking folinic acid. This again implicates the methylation > cycle, which is intimately linked to the folate cycle at methionine > synthase. > > The evidence seems to keep piling up. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Hello...Rich, or Jill, This may be a stupid question, but what is the difference between BH4 and Bio Thyro, which I see some have used for BH4? the cost difference? Also, what are the symptoms of a CBS upregulation, etc., which indicates the need for BH4? TIA > > Hi all. > > I want to mention some more evidence that suggests that this > hypothesis is relevant to CFS. > > Carnitine--There are a number of studies showing that this is low in > CFS, and that supplementing it helps some. Carnitine requires > methylation for its synthesis, so a deficit in methylation capacity > would explain the low carnitine in CFS. > > Coenzyme Q10--Two studies have found that supplementing this is also > helpful in CFS. Co Q10 also requires methylation for its synthesis. > Again, a methylation deficit would explain low Co Q10. > > Vitamin B12--Regland et al. gave hydroxocobalamin shots (1000 > micrograms) weekly to 10 female PWCs who had low B12 and high > homocysteine in their spinal fluid. They found that the ones who did > not have an MTHFR polymorphism were helped more by the B12, > presumably because their methionine synthase operation was not > hindered by a shortage of 5-methyltetrahydrofolate in addition to a > shortage of B12. All of this implicates the methylation cycle in the > pathogenesis of CFS. > > Folinic acid--There's a new study (Lundell et al., 2006) showing that > 81% of 58 CFS patients experienced subjective improvement of symptoms > after taking folinic acid. This again implicates the methylation > cycle, which is intimately linked to the folate cycle at methionine > synthase. > > The evidence seems to keep piling up. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 > > > > Hi all. > > > > I want to mention some more evidence that suggests that this > > hypothesis is relevant to CFS. > > > > Carnitine--There are a number of studies showing that this is low in > > CFS, and that supplementing it helps some. Carnitine requires > > methylation for its synthesis, so a deficit in methylation capacity > > would explain the low carnitine in CFS. > > > > Coenzyme Q10--Two studies have found that supplementing this is also > > helpful in CFS. Co Q10 also requires methylation for its synthesis. > > Again, a methylation deficit would explain low Co Q10. > > > > Vitamin B12--Regland et al. gave hydroxocobalamin shots (1000 > > micrograms) weekly to 10 female PWCs who had low B12 and high > > homocysteine in their spinal fluid. They found that the ones who did > > not have an MTHFR polymorphism were helped more by the B12, > > presumably because their methionine synthase operation was not > > hindered by a shortage of 5-methyltetrahydrofolate in addition to a > > shortage of B12. All of this implicates the methylation cycle in the > > pathogenesis of CFS. > > > > Folinic acid--There's a new study (Lundell et al., 2006) showing that > > 81% of 58 CFS patients experienced subjective improvement of symptoms > > after taking folinic acid. This again implicates the methylation > > cycle, which is intimately linked to the folate cycle at methionine > > synthase. > > > > The evidence seems to keep piling up. > > > > Rich > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Hi, There are several sources of BH4. Royal jelly provides a very low dose (plus amino acids), BioThyro provides a medium dose (plus other stuff), and the prescription BH4 provides a high dose (and no other stuff). So which one you use depends on how much you need and whether you want the other stuff in that source (the other things in BioThyro can cause problems for people). Prescription BH4 is the most expensive, although since you use a fraction of the pill, can actually be the least expensive. The only way to really know if you have a CBS up-regulation is to do the genetic test--symptoms and labs are variable. CBS is just one leg of the BH4 stool--your need for BH4 will depend on CBS status, MTHFR status, and bacterial load. Oh, I just realized this is the Experimental list. Sorry if this is too much Yasko info for this list. If you have more questions, you should probably come over to the Yasko list where we are supposed to discuss these things. Trina lifelonglearner79 <lifelonglearner79@...> wrote: Hello...Rich, or Jill, This may be a stupid question, but what is the difference between BH4 and Bio Thyro, which I see some have used for BH4? the cost difference? Also, what are the symptoms of a CBS upregulation, etc., which indicates the need for BH4? TIA Recent Activity 4 New Members 1 New Polls Visit Your Group Quote Link to comment Share on other sites More sharing options...
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