1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Still trying to get back to "base"

Blog entry posted by sregan, Mar 17, 2013.

I have stopped the SMP supps for a few days and doing better but not "back". Not sure what's going in. The day I stopped (Friday) my sleep was bad and I felt like death. The next morning was better and today was about the same as yesterday.

One thing is that REM sleep is just about non refreshing as it can get. My first attempt on the SMP I woke feeling better than I had in years. These last 2 mornings...blah, even awful. It's more about the mental state good REM puts me in. I'm a little creaky also like some inflamatory process. This morning I took some Postassium and 1/4 HCbl and went back to sleep. Didn't do much better.

I was wondering if by taking the extra MFolate I have depleted my B12. I was thinking that the body has uses for folic acid and B12 other than methylation I'm sure. If I"m only taking MFolate then am I depriving my body of other types of Folate or does it only use the active form for everything?

Anyway, just trying to get back to base now...

Afternoon Note: I took some Iron (18mg) and Magnesium (400mg?) this morning and that seemed to help a lot. Today has been fairly normal for me.

Evening Note: About to go to bed, today has been a pretty normal day. I think I remember Lotus saying Magnesium can get depleted and I just had an urge to take the Iron. Not sure which or if both helped. I plan to take Magnesium more regularly from now on.
sregan

About the Author

10 years CFS, SMP is helping me.
  1. Lotus97
    Rich had suggested glutathione or L-Cystine (although L-Cysteine, non-denatured whey, or NAC might also help) for the excitotoxicity from methylation due to a drop in glutathione, but in general Rich and Dr. Cheney aren't really into using whey, glutathione, NAC, etc anymore. I found this from Rich about the use of non-denatured whey for CFS
    http://forums.phoenixrising.me/index.php?threads/immunopro.10753/#post-188095
    I suppose if the whey helps, there's not any harm using although Rich does say not to take NAC/cysteine/cystine if you have mercury toxicity.
  2. sregan
    I wonder if that's why people did better on whey protein. It was supposed to raise levels of glutathione. I even wonder if that might be a place to start before methylation supps are taken? Thanks for the link.
  3. Lotus97
    I forgot to mention the main cause of B12 and folate depletion which would be low levels of glutathione. This is from Rich:
    "According to the GD-MCB hypothesis, if glutathione goes low enough, it provokes a functional B12 deficiency, which in turn leads to a partial block in methylation, followed by loss of folates and development of a stable vicious circle that makes ME/CFS chronic."

    This short article by Rich explains what's going in simple language. I sent it to my parents and they said they understand my condition better now after reading it:
    (just copy and paste the link below)
    http://phoenixrising.me/research-2/glutathione-depletionmethylation-blockades-in-chronic-fatigue-syndrome/a-simple-explanation-of-the-glutathionemethylation-depletion-theory-of-mecfs-by-rich-von-konynenburg
  4. Lotus97
    Not sure what you meant by inflammatory process, but methylation can increase inflammation.
  5. Lotus97
    Alpha lipoic acid and too much folic acid (for other reasons than folinic acid or methylfolate) can also contribute to a B12 deficiency. I think it's probably best to start with B12, then add folinic acid, and then finally methylfolate. The proportions Rich recommends for the SMP are 200 mcg folinic acid, 200 mcg methylfolate, and 2000 mcg of hydroxocobalamin. If you're taking less B12 then it would probably be good to take less methylfolate until you can increase your B12. Since you're most likely converting some folinic acid into methylfolate and also getting some folinic acid and methylfolate from food, taking B12 is more important and more necessary. A certain percentage of the population can even convert folic acid into folinic acid and methylfolate. That's why they add it to foods. Whether or not you are eating foods "fortified" with folic acid I would recommend reducing the amount of folic acid because that can also cause problems for some people (mostly for different reasons than folinic acid or methylfolate) .