Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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D RIBOSE

Discussion in 'General ME/CFS Discussion' started by Jessie 107, Jun 17, 2017.

  1. Jessie 107

    Jessie 107

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    I have just ordered D ribose to help with PEM.
    My question is should I take it every day? Or just when I have. PEM?
     
    belize44 likes this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I take it every day in my smoothie.
     
  3. MikeJackmin

    MikeJackmin Senior Member

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    Start slow - you want to work up to a full dose over a period of days, or it can cause stomach upset.
     
  4. Jessie 107

    Jessie 107

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    Thank you for the replys, will start slowly.
    Many thanks
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Aroa and Webdog like this.
  6. arewenearlythereyet

    arewenearlythereyet

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    I take it every day 3x 10g in my coffee (decaf of course)
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In case it isn't among the hits, here is a quote by me from one of the threads on d-ribose:

    from Erica Verrillo's e-book:

    "Dr. Cheney has observed that fully one-third of his patients cannot tolerate D-Ribose. To test for sensitivities, an initial small dose (1 to 2 grams a day) is recommended. PROS. D-Ribose appears to be generally well tolerated by people with CFS/ ME. Patients usually notice improvement in energy levels within two or three days, although one patient commented that “within an hour, it was like a super thick fog bank had dissipated.” D-Ribose works particularly well with brain fog, daytime sleepiness and hypersomnia. CONS. Some patients report that D-Ribose makes them sleepy, and that it saps them of energy. Those who take high doses (15 grams a day) have reported diarrhea, nausea, and headache."

    Verrillo, Erica (2012-09-14). Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Kindle Locations 12956-12962). Erica Verrillo. Kindle Edition.

    I could not tolerate it. I didn't feel tired, but like there was a war going on inside me. Most unpleasant.

    from http://forums.phoenixrising.me/inde...e-can-it-make-you-feel-bad.23173/#post-354442
     
  8. overtheedge

    overtheedge

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    some docs recommend taking ribose in small doses throughout the day since it has a short halflife, it didn't work for me before i started this sort of dosing schedule, I take 2.5g's of ribose, dissolve it in water, and drink a third every thirty minutes, sometimes I'll do this all day long though with an increase in brushing of teeth since it's a sugar. it is one of the best treatments I have for this crazy illness without a doubt
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    For cellular energy id consider adding creatine to the ribose. Creatine is quite cheap these days if you look around for different deals.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I note that most of those here reporting benefit from ribose are male. I wonder whether this reflects the genetic differences found between males and females with ME? Dr Naviaux found this:

    "Q4. Are men and women really that different in CFS?

    Yes. About 40-50% of all the metabolites that we measure in our method have a different normal concentration in males and females. This is not all related to testosterone and estrogen. Literally hundreds of metabolites are tuned to different concentrations in men and women. At the pathway level, we found that men and women shared 9 (45%) of the 20 biochemical pathways that were disturbed in CFS patients. Eleven pathways (55%) were more prominent in males or females. We find that to do metabolomics properly, you need to have an adequate number of age- and sex-matched controls. If healthy males and females are lumped together as controls, the power to see metabolic differences in CFS and many other diseases is much decreased. Likewise, the metabolism of a 25-year old male is different from a 35-year old male, and categorically different from a 25-year old female. In each decade of life there are many metabolic changes that occur as part of normal development and aging. When proper age- and sex-matched controls are used, metabolomics is one of the most powerful new tools available to physicians and scientists to study chronic complex disease."

    from http://forums.phoenixrising.me/inde...tudy-including-q-and-a-with-dr-naviaux.46520/
     
  11. PatJ

    PatJ far and free I gaze

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    That includes me. I add 10 grams to a morning smoothie that is split into three small meals for the first half of the day. D-ribose gives me enough extra energy to justify the cost of taking it. Vitacost ARO black is the least expensive pure D-ribose that I have found.
     
  12. Wufflit

    Wufflit

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    I have tried D-Ribose and used to take it everyday. I would drink 5g dissolved in water every morning. the first time i tried it my muscle pain went away in a few hours. and i found i could crouch down to reach things without any pain. i was very suprised by it. I might have kept using it but it's usually quite expensive. Also I think the lack of PEM caused me over-exert myself sometimes.

    I have read that D-Ribose does not contribute to tooth decay. it's a complex sugar that oral bacteria cannot metabolise. I'm pretty sure that is the case anyway. I guess it's good to brush regularly anyway, but as far as i can tell it's perfectly safe for tooth and gum health.
     
    Jessie 107 likes this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What i find interesting is generally men eat more red meat than women and its a food source with very high creatine content, so maybe showing men have more of a need for creatine??

    The other thing is creatine is used more in anaerobic exercise such as lifting weights and sprinting etc. I recall way back in school that the difference between men and women in power/anaerobic activity was much greater compared to aerobic activity where abilities were a closer match.

    It seems in general that cfsme somehow negatively effects aerobic metabolism in both sexes but i wonder if it seems more common or more serious in women as they arent as good at switching over to an alternative energy system such as anaerobic activity which is improved with creatine but is far from optimal. I have read that testosterone can increase creatine storage in men as well as glucose??

    I guess just try these supps and see. I know ribose initially helped some but after awhile i seem to lose any effects. Creatine for me seemed more effective but i think both i need to cycle off and on them if they are going to help??
     
  14. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I take 1-2 grams 4 times/day. The size of the dose depends on how active I will be following the dose. I think it works better to take ribose before activity to reduce/prevent PEM, rather than taking it after PEM has developed.

    I have a minor tendency toward hypoglycemia and cannot take it on an empty stomach.
     
  15. Alvin2

    Alvin2 If humans were rational...

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    I started it a week ago, it seems to help a bit, no nausea or anything, 5g 3x daily. Nothing spectacular, though a study i read says 3 weeks to notice a real difference. It seems to help physical energy more then mental functioning, but so far while noticeable not a huge amount, less gain then what i have lost in the past couple years (and i was bad already a few years ago)
     
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