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Questions on D-Ribose

- a letter from a reader


Dear Dr. Teitelbaum:

I am a physician (diagnostic radiologist). My wife has suffered from a moderately severe case of chronic fatigue syndrome/fibromyalgia for more than 5 years. Her sister developed an incapacitating case of the same disorder around twenty years ago.

My wife has tried numerous therapies, conventional and alternative, pharmacological and nutritional, in various combinations, with only mild improvement of her fibromyalgia. Her pervasive fatigue, which has been quite unremitting, has very much impaired her quality of life, and has never responded to any therapy.

So when I saw your article on D-ribose, I was not terribly hopeful. Frankly, I am not a "Journal of Alternative and Complementary Medicine" type guy. More "New England Journal" and "Science". And the study was an uncontrolled pilot study. However, I saw little reason not to try it, so started my wife on D- Ribose 4 grams tid.

The results, after a month, seem quite remarkable. While this medication has not had significant impact on her joint and muscle pain, her energy level and fatigue have improved dramatically. Although she continues to report a sense of fatigue on waking, this is less severe than previous. Her pervasive fatigue has definitely improved. She has been able to enjoy a much greater activity level and sense of energy than previous. I would estimate that her activity level, which was perhaps 40% of normal, now is 75%. I noticed her increased energy level within 10 days - rather than finding her in bed mid-morning, I didn't find her at all, since she was out and about town!

Incidentally, she has suffered from severe, prolonged migraines for around 20 years, and these also seem improved while on D-Ribose. However, her migraines are sporadic, with many prior periods of temporary remission, so I am less confident that her reduced migraines relate to the D-Ribose. We will continue to monitor this.

I don't think it is likely that her fatigue improvement represents a placebo response, since, as I mentioned, she has tried other treatments for CFS, fibromyalgia, and migraine that have been entirely ineffective. I would say that, historically, she is very resistant to placebo responses.

So we are quite encouraged at the moment.

I have a few questions and comments -

1. In your experience, is there a dose-response curve to D-ribose, and what would you consider a reasonable dose range for this agent?

2. Are patients from your pilot study being followed longer term, and if so, does D-ribose seem to remain efficacious?

3. Although I am aware of animal data on D-ribose suggesting it is safe, in your experience, have there been any adverse effects/toxicity concerns?

4. In your paper, you mention that a randomized trial is underway. When do you expect the results to be available?

5. In the discussion section of your paper, there is much commentary on the evidence for impaired muscle metabolism in CFS/Fibromyalgia patients, but there is little on the mechanisms by which D-Ribose may be altering various metabolic pathways in cells. Obviously, this would be an important area of basic research, if not already understood.

Interestingly, my wife is persistently hypophosphatemic, and this has eluded diagnosis. She also tends to be hypokalemic. Both deficiencies are well treated with supplements. There are a few articles in the literature associating hypophosphatemia with CFS. One wonders about a link between ATP/ADP metabolism and phosphate and potassium homeostasis in some CFS patients. But then again, I am a radiologist, not an endocrinologist or physiologist...

Thanks for any comments you may have on the above. We are grateful that your work has brought D-Ribose to our attention. Although the treatment period has been brief, D-Ribose has been associated with a positive therapeutic benefit for my wife, for a disorder that heretofore has been extremely resistant to treatment.

Yours,

Ethan T, M.D.


Jacob's response:

Dear Ethan,

Glad your wife is better. The ribose has been very helpful in many CFS patients. It likely is also helping the migraines, as other treatments that improve energy (e.g.-vitamin B2-riboflavin) have been shown (in RCTs) to decrease migraines. For more information, see my book "Pain Free 1-2-3!" (McGraw Hill 2006).

See the answers to your questions below after each question. I also encourage you to have your wife see a physician at one of the Fibromyalgia and Fatigue Centers nationally as they know how to treat CFS and Fibromyalgia effectively and see many patients form out of town. Visit www.Fibroandfatigue.com for more information.

QUESTION 1
In your experience, is there a dose-response curve to D-ribose, and what would you consider a reasonable dose range for this agent?

ANSWER
There is clearly a dose response curve and beginning with 5 grams 3 x day is important, though it can often be dropped to 5 gm 2 x day after 3-4 weeks. It is reasonable to try a higher dose for maintenance as well to see if benefit increases, e.g. 1.5 scoops 2 x day plus an extra 2-3 scoops added to the water bottle she should carry with her during the day (a good idea for cfs patients to have water near them as they dehydrate easily secondary to low anti-diuretic hormone levels).

QUESTION 2
Are patients from your pilot study being followed longer term, and if so, does D-ribose seem to remain efficacious?

ANSWER
No, but clinically in the hundreds of patients we've used it on, if it helps initially, they usually maintain the benefit by staying on it. Nonetheless, I recommend treating the entire process so that other systems are not stressed by increasing energy production and activity (see below).

QUESTION 3
Although I am aware of animal data on D-ribose suggesting it is safe, in your experience, have there been any adverse effects/toxicity concerns?

ANSWER
The only significant toxicity we've seen is feeling hyper/over-energised in which case we simply lower the dose or give it with food (as energy production increases, blood sugar can drop with ribose. Giving it with food helps prevent this.).

QUESTION 4
In your paper, you mention that a randomized trial is underway. When do you expect the results to be available?

ANSWER
As it is a larger study, it may take another 12-18 months.

QUESTION 5
In the discussion section of your paper, there is much commentary on the evidence for impaired muscle metabolism in CFS/Fibromyalgia patients, but there is little on the mechanisms by which D-Ribose may be altering various metabolic pathways in cells. Obviously, this would be an important area of basic research, if not already understood. Interestingly, my wife is persistently hypophosphatemic, and this has eluded diagnosis. She also tends to be hypokalemic. Both deficiencies are well treated with supplements. There are a few articles in the literature associating hypophosphatemia with CFS. One wonders about a link between ATP/ADP metabolism and phosphate and potassium homeostasis in some CFS patients. But then again, I am a radiologist, not an endocrinologist or physiologist.....

ANSWER
She may want to consider also adding magnesium 200 mg 2 x day (less if it causes diarrhea) as it is very unusual for magnesium to be optimal (or even adequate) if potassium is low (even if magnesium blood levels are normal) and intracellular potassium cannot be repleted in the face of magnesium deficiency.

The Ribose directly increases ATP, NADH, FADH and Actyl Coa production as Ribose (plus B vitamins, adenine and phosphate) make up the key components of these molecules and in energy depleted states (e.g. CHF) Ribose levels are very low and can become the rate limiting factor in production of these energy metabolites.

Phosphate deficiency is unusual (in part because of the phosphoric acid added to cola drinks) but can be seen because of the widespread hormonal dysfunctions (often despite normal labs) seen in CFS. It is worth considering a therapeutic trial of Cortef 10-20 mg (approximately 2-4 mg of prednisone, but more effective in CFS) which is quite safe at this low dose. See my "From Fatigued to Fantastic !" book for more info on this. The new edition was released October 4th.

------

Thanks for any comments you may have on the above. We are grateful that your work has brought D-Ribose to our attention. Although the treatment period has been brief, D-Ribose has been associated with a positive therapeutic benefit for my wife, for a disorder that heretofore has been extremely resistant to treatment.

Glad to answer your questions. Please also see my RCT study report on an integrated treatment protocol (91% improvement rate) at www.vitality101.com.

Hope this has been helpful,

Jacob

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