Has D-Ribose helped you? If so, what other mitochondrial supplements are you taking alongside?

[rosie26]

Thanks @dannybex - not what I want to hear, but I really don't want to be taking something that is going to give me problems down the line. Is taking 10g of ribose a day enough to cause glycation problems? I thought that dose was fairly low. If I can find something else that helps I will drop ribose as quickly as I can, just in case. I really don't need more problems. Appreciate you mentioning that very much.

 

[dannybex]

I don't know @rosie26 but I was taking probably the same amount, and have developed glycation problems, so I threw it out a few days ago. I don't need any more problems either.

 

[keenly]

IDEBENONE is the best. Absolutely brilliant. Buy as much as you can get.

 

[Bansaw]

Hi, I have found d-ribose helpful and am wondering what next to add. I would be interested to know what other mitochondrial supplements have been helping those who also take d-ribose. It would be great if you could give me the list you take and dose. Also, your opinion on what I should go for next or what helped you a lot. Thanks.

D-Ribose made me feel tired about 10 days after starting to take it. I felt more fatigued. Mine was mixed with a little magnesium though.
I have one stand-out supplement I can point to and say ,"this made a big difference" and thats Acetyl-L-Carnitine.

 

[rosie26]

Really like all your replies everyone. I am thinking about everything and all the supplements you are mentioning and will get back to you. I really have to look into the negatives of d ribose though - it might be only good as a temporary supplement until something better is found - I need to read up more about gylcation.

 

[rosie26]

D-Ribose made me feel tired about 10 days after starting to take it. I felt more fatigued. Mine was mixed with a little magnesium though.
I have one stand-out supplement I can point to and say ,"this made a big difference" and thats Acetyl-L-Carnitine.

Thanks Bansaw, I think that one might be one of the fairly high on my list when I decide.

 

[pogoman]

I found for me choline worked with carnitine to increase energy and reduce pain.
Choline supplements commonly have inositol together, as its referred to as unofficiially vitamin B8 and has a role in the mitochondrial ATP process I figured I would also try inositol this time around.
a correction on the amount, I checked the bottle and its 500mg each for choline and inositol.

well scratch inositol off the list of my supplements.
been noticing a trend of increasing fatigue and weight gain the past month even tho being more active.
of the two supplements I've added during that time (TMG the other), inositol is used to lower testosterone in women with PCOS and appears to do the same in men
so just straight choline and going to cycle DHEA for a short bit.

 

[Tunguska]

inositol is used to lower testosterone in women with PCOS and appears to do the same in men

I started avoiding it when I heard that too. Two bottles down the drain (not literally).

 

[Tunguska]

RE: the glycation, in another thread someone posted a study where rutin and other compounds significantly prevent glycation with fructose and ribose at least in vitro. Google in 2 seconds: https://www.ncbi.nlm.nih.gov/pubmed/16443355 So whole fruit > sugar and I get the vitamin C with added rutin/hesperidin. There were others like cinnamon but forget how effective.

 

[rosie26]

Thanks @Tunguska, that's interesting. I do get quite a bit of rutin in my diet - drink lots of black tea, fruit. I think I will go sparingly on ribose. I have always found lemonade as in the fizzy drink really helpful for a pick-me-up during the more severe PEM - as an emergency measure. I am usually very weak and not wanting to eat, but I find the lemonade gives me an energy boost on the about the 3rd day and my appetite slowly comes back.

 

[Tunguska]

Prudent. I also use sparingly. Its small energizing effect isn't worth risking more structural damage. Like you I'm less worried about damage already done because unknowingly consumed a lot of compounds like rutin, but still. If I ribose or even fruit it's always away from protein and PUFA-containing foods hoping for less cross reaction (this suggestion first came from PHD regarding fructose and omega-3). Unfortunately this might not fit with the recommended regimens.

 

[dannybex]

... inositol is used to lower testosterone in women with PCOS and appears to do the same in men

Hi @pogoman,

Do you have a reference for inositol lowering testosterone in men? Thanks in advance.

 

[dannybex]

Really like all your replies everyone. I am thinking about everything and all the supplements you are mentioning and will get back to you. I really have to look into the negatives of d ribose though - it might be only good as a temporary supplement until something better is found - I need to read up more about gylcation.

D-ribose may be okay. @Alea Ishikawa sent me this link, which I completely forgot about, but here it is:

http://www.lifeextension.com/magazine/2012/10/restoring-cellular-energy-metabolism/page-02

Seems like it only applies to very large doses.

 

[rosie26]

D-ribose may be okay. @Alea Ishikawa sent me this link, which I completely forgot about, but here it is:

http://www.lifeextension.com/magazine/2012/10/restoring-cellular-energy-metabolism/page-02

Seems like it only applies to very large doses.

Thanks Dannybex. I haven't had any ribose for ages but will order it again soon.

Yes I am pretty sure that link was the one I read a while back. I have only briefly skimmed it but what jumped out as I glanced over it was that they said ribose was anti-inflammatory and that is exactly what is does for me. In the first hour of taking it I can feel the pain in my hands alleviating - quite brilliant - wow I like that very much! I will read the link again properly this afternoon. Thanks for posting it here.

 

[pogoman]

Hi @pogoman,

Do you have a reference for inositol lowering testosterone in men? Thanks in advance.

not scientific papers, it seems most studies involve PCOS and high test levels in women.
If you google inositol and testoserone, the ones mentioning it lowering levels in men are health and muscle building websites.

 

[redaxe]

I didn't get any noticeable benefit from D Ribose, CoQ10 or any other energy enhancing supplement. I think it was Dr Jacob Teitelbaum who started pushing a lot of this stuff. For a while I was spending probably over $100 a week on energy boosting supplements that made almost no difference to my condition. Honestly I think he's a quack who is basically getting rich off selling overpriced supplements of dubious scientific value to his customers many of whom are desperate for relief. And I don't think it does the patient community any good in the public eye with people like him publishing books with unscientific and non-peer reviewed statistics as it just reinforces the image of us in the much of the media & medical community as having a 'fake illness'. This isn't an illness that can be cured by supplements in a vitamin shop and that fact that he spruiks this nonsense in my opinion is misleading and dangerous.

Then he always puts a bit in his books about how if all these supplements don't work then consider real therapies that might actually treat the cause of the illness like antiviral for instance but that is really just a cover to make himself look legitimate.

Honestly someone else on this forum made a good point that if we took all the money we spent on these supplements and donated it to the Standford Clinic or the Open Medicine Foundation we'd probably be many years ahead in research & development and actually closer to better treatments.

 

[dannybex]

I agree with some of your points @redaxe -- especially the way his book sets up a treatment plan that says basically, 'well, if this doesn't work, then try that, then that, then…etc.', but in the end, that's what most of us end up doing, because what works for one person won't work for another as we all got sick in different ways. Also, the title of his now ancient book is the embarrassing epitome of hyperbole, "From Fatigued to Fantastic".

Having said that, he does have a better track record than the outrageously overpriced Cheney (who also recommends some supplements, but also some wacky compounds he's invented himself), plus the profits from the supplements Teitelbaum recommends go to charity. I believe he's retired and has been for several years...

 

[redaxe]

I agree with some of your points @redaxe -- especially the way his book sets up a treatment plan that says basically, 'well, if this doesn't work, then try that, then that, then…etc.', but in the end, that's what most of us end up doing, because what works for one person won't work for another as we all got sick in different ways. Also, the title of his now ancient book is the embarrassing epitome of hyperbole, "From Fatigued to Fantastic".

Having said that, he does have a better track record than the outrageously overpriced Cheney (who also recommends some supplements, but also some wacky compounds he's invented himself), plus the profits from the supplements Teitelbaum recommends go to charity. I believe he's retired and has been for several years...

I haven't seen Cheney, nor do I know much of his approach so I can't really comment there but at least he doesn't turn himself into a celebrity like Teitelbaum has and deliberately change the definition of ME/CFS into chronic fatigue and run a huge promotional scam that hoodwinks the most unfortunate people that happen to get a real case of ME/CFS. Read some of the reviews on his books for instance... I honestly pity anyone that gets ME/CFS because people like him have muddled up the research so well and made it very difficult for real doctors to get awareness or for new patients to actually get to the right doctors. In my opinion he should be jailed for fraud and his assets confiscated and donated to real medical research foundations.

As one older post which I quote says

Here's a new protocol...SCAM

S- SELLOUT...the CFS population for a larger Target Market
C- CONNIVE...ways of taking credit for everything
A- ABANDON...your ethics by distorting the definition of CFS in the media
M- MANIPULATE....our illness for your own financial gain


And honestly I'm a little sceptical about this mitochondrial dysfunction theory. I don't know all the details behind it but putting in into google and it seems like most hits come up from one doctor - Sarah Myhill, a bunch of naturopathic sites & community forums. Raising mitochondrial function seems like another weird approach like 'cell-signalling' factors whatever that means.... which again doesn't treat the cause of the illness just the symptoms.
If mitochondrial function decreases with illness severity it is logically more likely to be a symptom/sign/response of the body to the underlying disease process which all the research points to being either immunological or infectious origin (possibly a combination of both). Downregulated energy production could even be a normal sickness response produced by the body to help recovery (same reason [although probably not the same physiological mechanism] when you get a bad flu you're crashed in bed - your immune system puts you out of action). Most people would say the hallmark symptom of ME/CFS is post-exertional malaise not simply a lack of energy per se.

And I'm surprised there's not community outrage here against Jacob Teitelbaum - the amount of damage he has done to people with real ME/CFS is staggering. I would say worse than the CDC & any psychiatrist group.

 

[dannybex]

I respectfully disagree with your last paragraph, especially when it comes to comparing him to the CDS or any psych group. Plus Teitelbaum didn't "change" any definition, he doesn't have the power to do so. In fact there is no mention of even CFS on the cover of the book -- it mentions 'chronic fatigue and fibromyalgia' and other chronic illnesses.

Anyway, like I said, I'm not a fan of the book or protocol in general, but I think it has offered 'some' partial help to some people -- note that 68% of the ratings on Amazon are 5-star reviews.

Mitochondrial problems are just common sense and have nothing to do with (again Cheney's) "cell-signaling factors". But I do agree that no one has thoroughly explained why or what is causing the mito dysfunction. But it could be so many different things...

If you haven't looked into Cheney's approach, his astronomical fees, and especially his results, you may just find your outrage directed elsewhere, but then again, maybe not.

 

[heapsreal]

If you minus the supplement sections in his book, the other treatments for sleep, hormones and infections arent too different to most drs who treat cfs.

the title fatigue to fantastic is overkill and his reports on ribose which sound like a cure are way overhyped. But if most drs were taught about fatigue from this book there would be alot less people suffering, as standard treatment by mainstream are antidepressants and cbt/get.

There is plenty of good info on use of sleep meds, use of hormones and treatment with abx and antivirals which many of us who have had cfsme for a long time probably still use .

Its probably a good introduction into treatments as long one understands the hype and probably wont be saying they are fantastic .