D-ribose Teitelbaum study on 257 CFS/FM patients

[zzz]

I have found ribose to do wonders for me since I first started taking it eight years ago. If I stop taking it, my energy level plummets. It's not a masking agent; ribose is essential for life. From Wikipedia:

Ribose (β-D-ribofuranose) forms part of the backbone of RNA. It is related to deoxyribose, which is found in DNA. Phosphorylated derivatives of ribose such as ATP and NADH play central roles in metabolism. cAMP and cGMP, formed from ATP and GTP, serve as secondary messengers in some signalling pathways.

Normally, the body makes enough ribose to be sufficient for its needs. However, this is apparently not the case in ME. For those who can tolerate it (which apparently is most people), ribose can be extremely helpful. As you can see from the above quote, a deficiency in ribose would adversely affect key elements of the body's energy and metabolism.

There are many reasons why some people's bodies may not be metabolizing ribose properly; just look at all the many things that can go wrong in ME. For one example, here's another quote from Wikipedia:

In biology, D-ribose must be phosphorylated by the cell before it can be used. Ribokinase catalyzes this reaction by converting D-ribose to D-ribose 5-phosphate. Once converted, D-ribose-5-phosphate is available for the manufacturing of the amino acids tryptophan and histidine, or for use in the pentose phosphate pathway. The absorption of D-ribose is 88–100% in the small intestines (up to 200 mg/kg/h).[6]

So, for example, if the body is not producing ribokinase properly, then many functions of ribose are lost. The same thing would happen if the body doesn't have enough phosphor to produce sufficient D-ribose-5-phosphate.

I looked for some studies recently and all I could find in the literature was the one cited at the start of this thread, and thought that it was a very weak piece of research, conducted by someone who sells the stuff.

Although Teitelbaum is certainly much more of a businessman than the researchers we're used to dealing with, I have always found him to be ethical. He explicitly states that all profits from his book and supplement sales are donated to charity.

One thing to consider is that not all D-ribose is the same. Some brands taste very bitter, and this is probably a result of the manufacturing process. So some impurities may be present in these brands, and people may be reacting to those. I first started taking the Corvalen brand, which is a good brand, but then switched to the Healthy Origins brand when I found that it was much cheaper, also had no bitter taste, and worked just as well.

As most people do respond positively to D-ribose, I would recommend that people give it a try - it can make a huge difference. It does not cause PEM. Dr. Myhill also recommends it; she also notes that much of her protocol overlaps that of Teitelbaum's.

 

[MeSci]

If mitochondrial dysfunction is a symptom of a viral infection and d-ribose is treating that symptom it would explain the masking effect.

It is interesting that like caffeine, some PWME thrive on it and some can't tolerate it at. I am just starting it for PEM. I excited because I can at least tolerate some exercise, and I can tolerate small amounts of caffeine too, such as in chocolate or green tea. But this wasn't always the case: before I started an anti-viral, gut healing regimen on a strict chicken broth based diet I couldn't tolerate any caffeine at all. It would give me panic attacks and tachycardia.

I wonder if people who can't tolerate d-ribose can't also tolerate caffeine? Would be an interesting poll.

I wonder whether the variation is related to our dominant neurotransmitter type, as discussed here.

I get shaky after coffee. I also tried cocaine 3 times, which I read somewhere acts on some of the same neurotransmitters as caffeine. All cocaine did was make me jittery, like coffee!

I used to tolerate coffee well, and it didn't keep me awake, but that may have been before I got ME. Not sure. Maybe it is only after I had ME for a long time that I became intolerant to coffee.

 

[MeSci]

One thing to consider is that not all D-ribose is the same. Some brands taste very bitter, and this is probably a result of the manufacturing process. So some impurities may be present in these brands, and people may be reacting to those. I first started taking the Corvalen brand, which is a good brand, but then switched to the Healthy Origins brand when I found that it was much cheaper, also had no bitter taste, and worked just as well.

As most people do respond positively to D-ribose, I would recommend that people give it a try - it can make a huge difference. It does not cause PEM. Dr. Myhill also recommends it; she also notes that much of her protocol overlaps that of Teitelbaum's.

I used this one from Muscleform. It tasted sweet, not bitter. I took 2 x 5g in water per day.

I've noticed that some of Myhill's treatments overlap with Teitelbaum's and have assumed that she picked up the info from him, but of course I may have assumed wrong.

 

[zzz]

I've noticed that some of Myhill's treatments overlap with Teitelbaum's and have assumed that she picked up the info from him, but of course I may have assumed wrong.

Here's what Dr. Myhill says; it appears that their two protocols were developed independently.

Dr Teitelbaum has researched this package of treatment. Although he and I have never met or corresponded (except indirectly) the package of treatment he offers his patients is remarkably similar to mine – namely diet, nutritional supplements, pacing, attention to sleep, correction of hormone levels, probiotics etc. By following up a group of patients with this active treatment comparing them to a placebo group (counselling only) he has clearly shown
substantial improvements due to these physical interventions.

She also explains in detail the role of D-ribose in ME/CFS: She addresses some of the tolerance problems here.

The first thing to look at in the result is the absolute level of ATP. If this is low, then this suggests two things.
Firstly, poor ability to make de novo ATP from its raw material, D-ribose. D-ribose in an individual with
normal metabolism can be made from glucose via the pentose phosphate shunt. However, if this is
malfunctioning, D-ribose is made slowly. Indeed, this probably explains the delayed fatigue in CFS. The
treatment is to supplement with D-ribose starting with three teaspoonfuls daily (15gms) and adjusting
according to response. Sufferers may see changes within a few days. Clinically I expect to see less delayed
fatigue and improvement in muscle pain and aching. D-ribose has a very short half-life and should be taken in
small doses throughout the day in drinks (hot or cold). Interestingly caffeine may enhance the effects of D ribose so I recommend taking with green tea, coffee, tea or whatever so long as these are tolerated. It is worth
supplementing D-ribose even with low normal results because I have so much happy feedback from patients
taking this supplement.

Some people do not tolerate D-ribose. This may be because D-ribose is derived from corn and small amounts
of corn antigen remain to which one may react allergically. Some people with a candida problem (see YEAST
and CANDIDA) may convert D-ribose back to glucose so it is fermented by yeast thereby worsening the
yeast problem.

The last sentence probably explains the problems with thrush that your friend developed.

More on intolerance:

What most often gets in the way is allergy or intolerance of supplements then there are some wrinkles that can be tried. One is to rotate them – that is to say on a Monday have the D-ribose, Tuesday, Acetyl L-carnitine,
Wednesday Co-Q10, Thursday magnesium etc. This helps to avoid new allergies developing.

Another possibility is the fermenting gut. Mitochondria are derived evolutionarily form bacteria – so
mitochondrial supplements may feed microbes in the gut and make a fermenting gut worse.

@MeSci, this last paragraph reminded me of this post of yours:

HORRIBLE effects on me. Felt like there was a war going on inside me, and my insides felt on fire while my skin was cold and covered in goosebumps. Jittery and shaky and fearing a little for my sanity. And my dermatitis came back, after I had abolished it with a leaky-gut diet and supplements after suffering with it for years.

A friend with ME said that her thrush came back after she started it.

An acquaintance with ME said that he felt like disembowelling himself with a kitchen knife after taking it.

Sorry to hear about all your bad experiences with ribose! I know very well what it's like to have a problem come back once you think you've banished it forever. I hope you've been able to get rid of your dermatitis since this incident. With a reaction as severe as yours, I wouldn't be interested in experimenting any more with ribose either.

Experiences like these could be explained by bad bacteria in the gut getting hold of the ribose and using it to party like there's no tomorrow. Stable infections can flare up this way, and with a weak immune system, the results can cascade. Elsewhere, Dr. Myhill says that this happens when the ribose stays in your gut too long, which gives these bacteria too much access to it, especially if it starts fermenting. She says by taking smaller doses throughout the day, the ribose passes through before it can ferment and before the bacteria can get much of it, and these symptoms can be avoided. She recommends 2.5 grams of ribose with each meal, plus another 2.5 grams mixed in with a beverage such as tea or coffee in the mid afternoon. In another place, she elaborates on avoiding reactions to ribose:

Fermenting gut - people who have a fermenting gut may be made worse by large doses of D-ribose. This is because this 5 carbon sugar could be converted back by the body to a 6 carbon sugar which yeast can ferment.
The key here is to reduce the dose and take small amounts regularly through the day so that it is quickly
absorbed and does not hang around in the gut to get fermented.

Then again, some people with severe gut problems may not be able to take ribose at all. In these cases, once the gut problems are reduced, ribose might be tolerated.

 

[MeSci]

Sorry to hear about all your bad experiences with ribose! I know very well what it's like to have a problem come back once you think you've banished it forever. I hope you've been able to get rid of your dermatitis since this incident. With a reaction as severe as yours, I wouldn't be interested in experimenting any more with ribose either.

Experiences like these could be explained by bad bacteria in the gut getting hold of the ribose and using it to party like there's no tomorrow. Stable infections can flare up this way, and with a weak immune system, the results can cascade. Elsewhere, Dr. Myhill says that this happens when the ribose stays in your gut too long, which gives these bacteria too much access to it, especially if it starts fermenting. She says by taking smaller doses throughout the day, the ribose passes through before it can ferment and before the bacteria can get much of it, and these symptoms can be avoided. She recommends 2.5 grams of ribose with each meal, plus another 2.5 grams mixed in with a beverage such as tea or coffee in the mid afternoon. In another place, she elaborates on avoiding reactions to ribose:


Then again, some people with severe gut problems may not be able to take ribose at all. In these cases, once the gut problems are reduced, ribose might be tolerated.

Thanks for the info.

I did have long-term gut problems (IBS-d type) but had alleviated them dramatically with a leaky-gut diet and supplements before trying d-ribose. I think that messed my gut up again for a while too but haven't got the health diary to hand.

I think my dermatitis cleared up fairly soon after I stopped the ribose, thanks.

I don't seem to tolerate Co-Q10 either BTW. Hypoglycaemic response, I think (dizzy - not sure if I had my blood glucose monitor then but it wasn't my BP).

If anyone is interested they can check my profile for a brief summary of some things that did and didn't work for me.

 

[Leopardtail]

Just came across details of this study on the MEA website.

Rather uninformative - not clear whether all patients had a diagnosis of both FM and CFS.

Presumably they're using a broad definition of CFS to have a population prevalence of 2-4%.

And no control condition.

Still, does anybody have views on D-ribose? I happen to have some in the cupboard that I've never used

For me personally, it produced tangible improvement, and has for a number of people at my local support group. As is so often the case though, some people react badly to it, and its important to know it's derived from sweetcorn.

 

[Leopardtail]

if ribose didnt help u once before maybe its because other issues need to be sorted first eg infections, good sleep, other mito supps like q10, acl carnitine etc. Im not saying this is the answer but i think it comes down to timing when to use these supps, when on top of other infections and issues then one could get benenfits from ribose. Just a thought, as its now helping me recover from activity quicker where previously got minimal from it. Sorting out other abnormalities out has helped me alot.

cheers!!!

good point, I fixed sleep before taking ribose...

 

[Leopardtail]

I wonder whether the variation is related to our dominant neurotransmitter type, as discussed here.

I get shaky after coffee. I also tried cocaine 3 times, which I read somewhere acts on some of the same neurotransmitters as caffeine. All cocaine did was make me jittery, like coffee!

I used to tolerate coffee well, and it didn't keep me awake, but that may have been before I got ME. Not sure. Maybe it is only after I had ME for a long time that I became intolerant to coffee.

good point, I was immune to caffeine (slept like a baby) pre-ME, but feel dread-full on it now.
I benefit from Ribose though so unsure about any link.... I do produce shed loads of dopamine, so perhaps that's the one?

 

[Leopardtail]

I haven't read the full article so I don't know if it is explained further on but 257 people started this 3 week treatment and only 203 completed it. That's more than 20% of the trial that we have no results for. We have no way of knowing whether they improved or not, but I'm guessing they didn't improve otherwise if it was me I'd want to be telling everyone about it. I can imagine people being recruited on the basis of a potential improvement and just giving up after a couple of weeks when no improvement arrives. If those 20% didn't improve that could have a significant effect on the resuts.
As a general rule shouldn't the study be required to explain what happened to the missing patients. If i remember correctly nearly 800 patients were missing from the final results of the Pace study.

You make a good point, but I suspect this is likely to be a difficult issue. I help a number of people with ME and its quite common for them due to family stress, income issues etc for bouts of severe fatigue to prevent them responding to communication for weeks/months - it's a major issue if they are not forced to respond due to the nature of the therapy.

 

[Leopardtail]

I view D-ribose as a sort of masking agent. It certainly improves my energy on a daily basis, but I doubt it's doing anything beneficial for my health in the long run. It's a temporary boost, like coffee only less severe.

I agree, it's not the wonder-cure that Teitelbaum seems to think it is, but I can definitely tell the difference between when I take it and when I don't as I explained in a recent blog post. I won't repost the whole thing here, but if you're interested in my full take on D-Ribose, here it is.

you might well be interested in Myhill's new book - it talk about why you not make your own ribose....

 

[Leopardtail]

Here's what Dr. Myhill says; it appears that their two protocols were developed independently.


She also explains in detail the role of D-ribose in ME/CFS: She addresses some of the tolerance problems here.


The last sentence probably explains the problems with thrush that your friend developed.

More on intolerance:


@MeSci, this last paragraph reminded me of this post of yours:


Sorry to hear about all your bad experiences with ribose! I know very well what it's like to have a problem come back once you think you've banished it forever. I hope you've been able to get rid of your dermatitis since this incident. With a reaction as severe as yours, I wouldn't be interested in experimenting any more with ribose either.

Experiences like these could be explained by bad bacteria in the gut getting hold of the ribose and using it to party like there's no tomorrow. Stable infections can flare up this way, and with a weak immune system, the results can cascade. Elsewhere, Dr. Myhill says that this happens when the ribose stays in your gut too long, which gives these bacteria too much access to it, especially if it starts fermenting. She says by taking smaller doses throughout the day, the ribose passes through before it can ferment and before the bacteria can get much of it, and these symptoms can be avoided. She recommends 2.5 grams of ribose with each meal, plus another 2.5 grams mixed in with a beverage such as tea or coffee in the mid afternoon. In another place, she elaborates on avoiding reactions to ribose:


Then again, some people with severe gut problems may not be able to take ribose at all. In these cases, once the gut problems are reduced, ribose might be tolerated.

MeSci,

did you consider that B2 deficiency might have been induced? That can cause pain of nervous origin & dermatitis.

 

[Leopardtail]

I haven't read the full article so I don't know if it is explained further on but 257 people started this 3 week treatment and only 203 completed it. That's more than 20% of the trial that we have no results for. We have no way of knowing whether they improved or not, but I'm guessing they didn't improve otherwise if it was me I'd want to be telling everyone about it. I can imagine people being recruited on the basis of a potential improvement and just giving up after a couple of weeks when no improvement arrives. If those 20% didn't improve that could have a significant effect on the resuts.
As a general rule shouldn't the study be required to explain what happened to the missing patients. If i remember correctly nearly 800 patients were missing from the final results of the Pace study.

he does report that two indicated cessation due to adverse effects, and many gave no reason

 

[MeSci]

MeSci,

did you consider that B2 deficiency might have been induced? That can cause pain of nervous origin & dermatitis.

That post of 'mine' that you quoted was not mine, but a reply to mine by @zzz!

No, I didn't consider B2 deficiency, but I don't get neuropathic pain. Not much pain at all. I think the leaky-gut diet and supplements made changes to my immune system. For example, I redeveloped the allergy to wool that I had had before, but not after, developing ME, suggesting a change in my balance of immunoglobulins. I think that's what got rid of the dermatitis, which did not seem to be an allergic form.

 

[Adlyfrost]

HORRIBLE effects on me. Felt like there was a war going on inside me, and my insides felt on fire while my skin was cold and covered in goosebumps. Jittery and shaky and fearing a little for my sanity. And my dermatitis came back, after I had abolished it with a leaky-gut diet and supplements after suffering with it for years.

A friend with ME said that her thrush came back after she started it.

An acquaintance with ME said that he felt like disembowelling himself with a kitchen knife after taking it.

Erica Verrillo says in her e-book that Dr Cheney found that about a third of his patients cannot tolerate it.

I looked for some studies recently and all I could find in the literature was the one cited at the start of this thread, and thought that it was a very weak piece of research, conducted by someone who sells the stuff.

I agree with @Patrick* that it may be a masking agent - a sticking-plaster approach that may treat a symptom for some people but perhaps have adverse consequences for real improvement. If it provides energy, this is IMO likely to be energy that the body doesn't have the resources to spare. Someone said this in another thread about d-ribose (or was it this one - haven't read it all yet!)

OMG, sorry about your rxn @MeSci! I had heard of people having similar reactions and for a long time was too scared to try D- ribose. But so far, knock on wood, no side effects.... Of course, a lot of great supplements I have tried started out good only to make me worse than when I started them later so I am proceeding with caution!

I remember reading something that Dr Chia said (I can't remember where), something like, D-ribose replaces something in the cell that viruses rob from them. I wish I could find that article.

 

[Leopardtail]

OMG, sorry about your rxn @MeSci! I had heard of people having similar reactions and for a long time was too scared to try D- ribose. But so far, knock on wood, no side effects.... Of course, a lot of great supplements I have tried started out good only to make me worse than when I started them later so I am proceeding with caution!

I remember reading something that Dr Chia said (I can't remember where), something like, D-ribose replaces something in the cell that viruses rob from them. I wish I could find that article.

That article would be very interesting to see.....

 

[Critterina]

(quote from wikipedia

In biology, D-ribose must be phosphorylated by the cell before it can be used. Ribokinase catalyzes this reaction by converting D-ribose to D-ribose 5-phosphate. Once converted, D-ribose-5-phosphate is available for the manufacturing of the amino acids tryptophan and histidine, or for use in the pentose phosphate pathway. The absorption of D-ribose is 88–100% in the small intestines (up to 200 mg/kg/h)[6] (end of wikipedia quote)

So, for example, if the body is not producing ribokinase properly, then many functions of ribose are lost. The same thing would happen if the body doesn't have enough phosphor to produce sufficient D-ribose-5-phosphate.

Hi @zzz ,

I reacted to this because it seems to me that the quote in wikipedia (and by the way, the reference link [6] is broken), isn't talking about humans. It has to be talking about other animals/microbes. People can't make tryptophan or histidine; that's why they are called "essential amino acids." Although there appears to be one ribokinase-encoding gene in the human genome, there are ribokinase-incoding genes in lots of other organism. Since humans can't make these essential amino acids, I have to conclude that the ribokinase in humans has a different function, and that the wiki citation was not for humans.

 

[zzz]

I reacted to this because it seems to me that the quote in wikipedia (and by the way, the reference link [6] is broken), isn't talking about humans. It has to be talking about other animals/microbes. People can't make tryptophan or histidine; that's why they are called "essential amino acids." Although there appears to be one ribokinase-encoding gene in the human genome, there are ribokinase-incoding genes in lots of other organism. Since humans can't make these essential amino acids, I have to conclude that the ribokinase in humans has a different function, and that the wiki citation was not for humans.

You are correct about tryptophan and histidine being essential amino acids; therefore, at the very least, the sentence referring to them would not apply to humans. The rest of the article does not say whether it applies to humans or not, although the paragraph I quoted does mention "the small intestines", so it doesn't seem to be talking about microbes. In any case, the Wikipedia article definitely needs clarifying or correcting, and that part of the quote should be ignored. Thank you for pointing this out!

 

[Leopardtail]

You are correct about tryptophan and histidine being essential amino acids; therefore, at the very least, the sentence referring to them would not apply to humans. The rest of the article does not say whether it applies to humans or not, although the paragraph I quoted does mention "the small intestines", so it doesn't seem to be talking about microbes. In any case, the Wikipedia article definitely needs clarifying or correcting, and that part of the quote should be ignored. Thank you for pointing this out!

Tryptophan is 'conditionally essential' meaning we can make it, but not nearly enough.....

 

[Critterina]

Tryptophan is 'conditionally essential' meaning we can make it, but not nearly enough.....

Not according to the NIH. http://www.nlm.nih.gov/medlineplus/ency/article/002222.htm

 

[Leopardtail]

Not according to the NIH. http://www.nlm.nih.gov/medlineplus/ency/article/002222.htm

There are aspects of Niacin and BH4 metabolism that can do this BUT only at a very low level and with massive BH4 depletion.