Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, July 1, 2012

Lessons learned about 2 of my supplements: Ribose and SAM-e

My wife, baby, and I just returned home from a weekend at my parents' house.  My parents live about an hour's drive up the coast, which usually isn't too tedious of a trip for me (although I felt too sick to drive - my wife had to handle that part).  The original point of the trip was for me to attend a class reunion, but by the time we arrived at my parents' house, I was too crashed to attend.  But the weekend turned out fine anyway.  It's always gratifying to watch my parents fawn over their granddaughter.  I've learned that babies are as addictive as crack cocaine to grandparents.

When packing for the trip, I remembered all of my supplements except D-Ribose.  I usually take 5g of Ribose twice a day.  By the time Sunday morning rolled around, I'd missed two doses and was feeling a type of malaise that I hadn't felt since before I started taking Ribose back in November.  I was shocked at how quickly the effects set in.  It's scary to think that my ability to function on a semi-adequate level each day may be due to this one supplement. It's as if the Ribose, alone, is artificially propping me up enough to do my limited daily activities. 

When we reached home late Sunday afternoon, I immediately took 5g of Ribose and felt a return to "normal" within a half hour.  That will be the last time I forget to bring the Ribose when I leave the house!

The other revelation I had is that SAM-e is powerful, and needs to be taken with plenty of potassium.  I've been on Fredd's active B12 protocol since February, but had not added any of the optional cofactors, such as SAM-e, until last week.  Fredd is clear that one needs to watch his/her potassium levels when increasing dosage of B12, or when adding cofactors.  I thought I had covered my bases by increased my potassium intake by 400mg/day at the same time as the SAM-e.  This was clearly not enough.  Beginning Friday, I came down with the same neuro symptoms - the same crushing brain fog and muscles twitches - that I'd experienced when I first started taking B12 back in February.  So I backed off of the SAM-e and B12 yesterday, and increased my potassium intake, and by today the neuro symptoms had almost completely disappeard.  

Lessons learned.


9 comments:

  1. Wish I had known about the potassium requirements of B12 supplementation last year. It might have helped the brain fog and neuro symptoms. On a good note, my blood levels of B12 are now at the high end of normal and I can stop the supplement. Woohoo!

    ReplyDelete
  2. For me, DHEA/D Ribose/Taurine have helped along with NT Factor. I am really intrigued about ImmunoStim and Equilibrant. My ME started distinctly with a virus. I have also heard others have some success with tyrosine, but have yet to try this. All these supplements get very expensive.....and hard to remember to pack them when traveling. Hard to imagine the days when healthy, and never having to take all these pills.

    ReplyDelete
    Replies
    1. Always interesting to read what others are taking. I've never heard of tyrosine, but I'll definitely look into it now.

      By the way, I take NT Factor too, but I can't tell if it's making a difference.

      Delete
  3. Interesting! Especially about the d-Ribose, as my LLMD "prescribed" it as an added ingredient in my daily "medical shakes," but by the time I get the shake mix, which itself is loaded with nutrients & formulated to heal a leaky gut, support the immune system, etc, and a special "herbal aloe" liquid I add in, plus the 3 different adrenal supplements... the ribose was putting it waaay over the top, so I skipped that one. I thought I might get it online, where it's likely cheaper. Will have to look into that! Thanks, Patrick!
    ~ Ash

    ReplyDelete
    Replies
    1. Hi Ash. Yeah, I've read some people say that it does nothing for them, so I supposed everybody is different, but it definitely helps. I think it mostly just masks your tiredness, but doesn't really make you healthier. But I'm OK with that.

      Delete
  4. We have tried D-Ribose too, must keep up with it. We seem to start a few different things at a time and so then never know which is working...which I guess really doesn't matter, as long as it works. Something that seems to be helping, and I'm not sure if it's just an Australian product, is 'Fusion Health' brand - Astra 8 Immune Tonic. Ebay seems to be a good place to source D-Ribose for those on a budget, especially auctions from the UK :)

    ReplyDelete
    Replies
    1. I can completely relate to starting several supplement at once and not knowing which one is helping. I think in the future I'm going to try to avoid starting more than one at once.

      And thanks for the tip about Ebay!

      Delete
    2. Hi Patrick, a few questions for you because I have been on the PR forums for five hours and my brain isn't working anymore. I have been taking Thorne #12 B complex every day for months and months, just had my B12 tested and it is above normal range. Do you think I should change B complex to one lower in B12 (#6 for example)? Also, I increased the salt I add to food because I was told to for my blood pressure, but never knew anything about potassium. I will start supplementation and ask for a blood test, but do you know what sort of range I'd be looking for?
      Finally, if I start myself on DRibose, do you recommend a brand and dose to begin with? Thanks for the help! If you don't know these answers off the top of your head, obviously don't do research for me, I just thought you might know....

      Delete
    3. Hi Elizabeth. I've had my B12 tested and the blood serum level was above normal range, but the people who know on PR will tell you that blood serum usually has nothing to do with it. Dr. Yasko says that too, BTW. It's all about *functional* B12 deficiency--i.e. how much B12 your body is actually utilizing in the tissue. Dr. Yasko basically says don't worry about what the blood serum level says, it doesn't mean anything. She believes that if you have CFS, you have functional B12 deficiency, and that won't show up on regular blood tests.

      I've never heard what potassium levels you're supposed to shoot for on tests. I just go by symptoms. If I start taking B12 and get major brain fog and other problems right away, it usually means I need more potassium.

      As far as D-Ribose, i have always had the best luck with Douglas Laboratories Corvalen D-Ribose. It is supposed to be the best quality. So they say.

      Hope that helps. :)

      Delete