Discussion in 'Fibromyalgia Main Forum' started by Ponysue, Aug 26, 2008.

  1. Ponysue

    Ponysue New Member

    Hi Everyone,

    New to this board. Fms/CFS for 14 yrs.I'm taking the ususal prescription meds and managing to get by. Just wondered if anyone has had luck with D-Ribose. I have been using it with success and hoped someone else has had the same luck and would share experience.
  2. DeborahLynn

    DeborahLynn Member

    It was too expensive to take for more than two weeks so far; when I get more money, I'll get some more, and try it for longer... I noticed a very small lift, but it was nothing to write home about. I love how it tastes, though, but not enough to dish out the money, esp. when I didn't have it.

    I hope others have had more success than I had! From what Dr. Teitelbaum says about it, I should have noticed significant improvement in two to three weeks, but I just didn't have enough money to buy the next bottle of it. The two weeks I did take it, along with some other things in Dr. T's protocol, I just haven't noticed much if any improvement. I sure hope others have!!!

    My search isn't over yet; I'm not giving up, just waiting for more means in order to try something else...

    Love and prayers,

  3. victoria

    victoria New Member

    who has tried it didn't find any help at all.

    But, anything is worth a trial that appears to have good research behind it (not sure if it does or not, but I believe there's an article in the research library here (look up above at the white tabs).

    You might also want to do a search on it, using the 'content' option in the search box to see what others have posted about it, it's been discussed before.

    hope that helps!

  4. charlenef

    charlenef New Member

    im on day 10 so far i havent seen a difference but i will continue for at least a month to see
  5. cfsgeorge

    cfsgeorge New Member

    According to Dr T and his book, D-ribose helped 66% of CFS/FM patients to feel 45% more enegy. I have been on d-ribose for +2months and I don't feel a thing. However, I will continue a maintenance dose of 5-10g/day since it doesn't hurt. I've been on Dr T's SHIN protocol for the last few months. It makes sense to me so i will continue.

    I just started the Proboost today and I'm getting prepared to start the transfer factor, Dr Pall's "NO-OH-NOO" protocol and Dr. Rich Van K's methylation protocol all in the next 2 weeks.

    To tell you the truth, nothing else has helped me so far-traditional drug therapy or alternative medicine. In fact, every failed treatment/protocol has made my CFS worse! The only thing that has helped just a tiny bit is plenty of sleep, plenty of rest and not to crash.

    Is there a consensus on anything that has significantly helped the majority of those with CFS? I feel like a "lab rat."
  6. Gothbubbles

    Gothbubbles New Member

    I took d-ribose and it was like rocket fuel. I got up and made complicated breakfasts for myself even!! I was taking 15g a day minimum, split into 5 grams at a time. I noticed it in a couple weeks time.

    I don't take it now, because it was affecting my blood sugar and wonking me out, making me crash. I may return to it to supplement my protocol at some point in the future, but remember that just because you feel better doesn't mean you are!!

    I had a major crash because I felt like my limits were improved but it was not so. I believe that it makes you feel better but doesn't actually make you better necessarily, so be careful not to push yourself!!!
  7. cfsgeorge

    cfsgeorge New Member

    It's taken me some time and much pain to figure out your statement "it makes you feel better but doesn't actually make you better necessarily" You're correct in that statement. please be careful everyone and not overdo yourself just because you "feel better" on any therapy. You are not necessarily "better" or healthier.

    When i first started ritalin, i actually felt "normal" for once, but it only lasted a week. It made me feel so good and "healthy" i overdid things and made my CFS much worse after the ritalin no longer "worked." Be very careful about using amphetamines to fight through this awful fatigue because you can do it for a short time only. then, you'll end up crashing much harder afterwards. This goes for using cortisol, thyroxine and hgh as therapies for CFS when you're not clinically deficient in them. You'll obviously "feel better" using these in the short term, but it won't last in the long term and it can cause permanent "shutdown" if you're using these w/o a true deficiency.

    I'm looking for things that heals and cures CFS not "bandages."
  8. GoWest

    GoWest New Member

    I'm posting this two places to be sure you see it. My real name is Paula Carnes, and you will find some articles by me at this website and other places online. I write that just so that you will pay attention to what I am posting here. I hope it will be helpful.

    One doctor who was called in to treat President Bush's Lyme told me that 95% of his cfs patients test positive for borrelia.

    CFS George, go to Amazon and buy a book called "The Potbelly Syndrome." Forget about fat - read it to learn about underlying chronic intracellular infections.

    Then go to http://www.cpnhelp.org and look up the treatment recommended in "Potbelly Syndrome." There is also an excellent article related to it here at ImmuneSupport.

    Once you get the picture you can recover in about 3 years of treatment. Go for it, man.
  9. DeborahLynn

    DeborahLynn Member

    I've tried so many different things, with only minimal results. Most of what I've tried either had bad side-effects, or did nothing at all for me. Only a couple of things have helped some of the symptoms, like: melatonin for sleep, magnesium for constipation/leg cramps, probiotics for digestion/acid reflux/weight loss, sunshine and fresh air, good nutrition, etc.

    When I read about d-ribose, I had a glimmer of hope, but so far it has turned out to be another dead end. I'm not giving up searching, though!

    Have a great start to your weekend!

    Love, Debbie
  10. simonedb

    simonedb Member

    I am curious about the potbelly syndrome. I looked up the book and a critque of it said it didnt really give a complete answer on how to lose the weight.
    you mentioned at a post that on the cpn site there was advice on how to get rid of the potbelly, could you put the exact link here because I couldnt find it with the link and suggestion for search you made.

    I have always gained weight easily but suddenly I am holding onto weight more easily than usual and getting more of a potbelly. I am trying to figure out whats going on, what rx it might be related to or if eating too much. A friend who has lessor fatigue issues than myself, but does have some, stayed with me for a couple weeks this summer ,and that girl has a classic potbelly; after reading about infection and germs I am paranoid she gave me something! I am starting to look pregnant just like her, not as bad yet and I want to nip it in the bud. Over the years I have noticed its like my body has a mind of its own about weight, I cannot always figure out why it gains and loses weight when it does because sometimes it seems independent from how much I eat or exercise.
  11. cfsgeorge

    cfsgeorge New Member

    As soon as i saw your post, i just kept on running with it like forest......

    i'll post back to you after i get it all together. thanks!
  12. JoFMS

    JoFMS New Member


    I started D-Ribose about 3 days ago 3 x day. So far - no difference but its early days. I hope once my adrenals are fixed then it may start to have affect.
  13. roseants

    roseants New Member

    I started taking Corvalen M a few years agos and it took a while, but it REALLY helped. IT cleared out the cobwebs in my brain and has helped my energy level too. Some people can't tolerate it, but it helped me.
  14. GoWest

    GoWest New Member

    Drop me an email. I will get you the name of a few docs in Cali besides Chia, not that he's not good. But there are a couple others worth their weight in chocolate.

    Keep runnin', buddy, you can get well. Maybe not cured but WELL. And, no, the CDC doesn't have a clue. One AIDS specialist at a biotech conf. I attended told me, "You (cfs patients) are farther behind than we were in 1985."

    I think the medical world doesn't want to admit there is a severe, chronic group of infections that they cannot fix.

    Paula Carnes
  15. znewby

    znewby Member

    When you say that you tried drug therapy do you mean you tried antivirals and they didn't help?
  16. Clay2

    Clay2 New Member

    I do the Myhill protocol when I need energy and strength.

    acetyl l carnitine

    It makes quite a difference for me. I probably do it 3 times a week.
  17. xchocoholic

    xchocoholic New Member

    Hi there,

    I was hoping you could answer a couple of questions for me.

    You said that these helped you and I was interested in finding out if you're feeling healthy at rest. I see Myhill and Titelbaum saying that you have to be in order for d-ribose or Sinatra protocal to work.

    Actually they said it was dangerous to boost your energy unless you're feeling healthy at rest.

    I'm asking because I just started playing with d-ribose last week and have noticed that it stops me from feeling so shakey when I'm active... Were you feeling shakey when active / walking for any length of time ?

    How do you take this ? I found the article where Dr. Myhill stated that d-ribose + caffeine was a good pick-me-up, but I didn't see directions.

    I took 1 tsp in a few oz of water first thing this am on an empty stomach and while it stopped the shakey / hypoglycemia feeling for a little while, it didn't last. I had to eat breakfast.

    Also, I looked at your profile and saw that you have chronic pelvic pain and kidney stones and wanted to recommend the low oxalate diet. I have both of those too and have found foods with oxalates, esp spinach will bring on pelvic pain / UTI symptoms. So far since starting this diet, I haven't had any more kidney stones (knock on wood).

    Thanks .. Marcia