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Mitochondrial supplements worked great then stopped...why?

Discussion in 'General Treatment' started by overtheedge, May 22, 2017.

  1. overtheedge

    overtheedge

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    Last year I started taking CoQ10, Acetyl-L-Carnitine, and D-Ribose and felt excellent each time. The Q10 really did it for me, thought I was just on the verge of a cure. I never used them more than a few days at a time, I didn't want to get into a supplement and try just it for a month or two and find that it's something that wont get me well no matter how long it's used so I tested all sorts of things. In that time I found that Ashwagandha, Rhodiola, and Garum Armoricum, three adaptogens, really helped out, they still do a little but not as much which is much the same as the mitochondrial supplements.

    So at the beginning of this year I figured I had enough supplements that worked lined up to get cured of this Chronic Fatigue Syndrome and so began by testing Q10, I had tested different kinds of q10 like ubiquinol and such and all four or five times I tested I felt outstandingly better after just a few days but this time it just went nowhere, two weeks of nothing, then I added in the carnitine only to find that it had run out as well, the D-Ribose still worked and still does work, I found a way to take it that is better than the way most advise, instead of taking 5gram doses 3x/day I pour out a glass of water, add 2.5g's of ribose to it, and drink a third of that each half hour, ribose has a very short half life and with this I do feel good most of the day through but not the way I felt when the carnitine and q10 were going.

    The adaptogens still give a little something but nothing like they were giving, with adaptogens they say your body can get used to them and stop getting benefit from them so this part isn't too suprising, hell, i'm glad they still do anything at all.

    Q10 always worked strangely, it would kick in almost exactly 3 hours after I took the softgel each time, lately, when I do take it I think it might still have some effect but, still, I need back what I had. It felt so ridiculously good.

    Does anyone know how I can get those two supplements to kick in again or something else for ATP that I might take?

    thanks all
     
    echobravo and Jesse2233 like this.
  2. Bansaw

    Bansaw Senior Member

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    This is the $1m dollar question. If you could find a reset switch. Those who take pain killers have to take more and more as time goes on to produce the same affect.
    People in the past have said that taking the supplements, they don't take them seven days a week, but they take the supplements 5 days on, 2 days off to stop their body building a resistance/familiarity, and thats worked for some, or so they report. That doesn't help you in your current situation, but might help in the future.
     
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  3. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I've taken CoQ10 every day for a year, in higher doses and it's not worn off. However, I've been running low and haven't taken it normally recently, and I dipped a bit. L-carnitine I've taken, but the ones I have are to be taken on an empty stomach, and I find it harder to remember to take them. I've never made up my mind about d-ribose, but I think I should give it another go. There's a place in the UK doing one third off orders right now, and they sell bulk supplies of this stuff.
     
    ChrisD likes this.
  4. Apple

    Apple Senior Member

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    I wonder if you had a deficiency (in the regular sense, not the M.E sense) and correcting those is what helped you initially.

    I had a B12 deficiency, and in the first year of getting injections, they helped. Now they don't seem to make any difference which I assume is because my levels are reasonably high and my body doesn't NEED it as much anymore.
     
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  5. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Out of interest, what dosage of CoQ10 were you taking?
     
  6. Kathevans

    Kathevans Senior Member

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    I understand that Adenosyl B12 works in the mitochondria. Have you tried that? Over time it will give more energy; and it 'feels' very different from Methyl B12.
     
    gabriella17 likes this.
  7. gabriella17

    gabriella17 Senior Member

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    Thanks for mentioning this. I'd never heard of it before.
     
  8. gabriella17

    gabriella17 Senior Member

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    I've started taking the CoQ10 over the last few weeks as well, but I honestly don't feel different. I have taken a course of it last year along with iron, vitamin D, and d-ribose - and I did feel better in that the POTS got much better. But I've never noticed a same day effect. I thought that with most supplements, you have to take it for weeks to get any benefit?
     
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  9. overtheedge

    overtheedge

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    It is a shame that so many meds show such promise before wearing off, examples I've found have been Omega 3-6-9, mastic gum, and NAC. D-Ribose hasn't failed at all though, if anything it has gotten better for me. DGL is another one that soldiered on though for me, used to have some serious constipation issues and infrequency but DGL not only corrected them but fixed the issue permanently so I don't have to take it anymore; been hoping to find something like that for cfs. thought coq10 would be the one but oh well.

    Bulk is the way I buy D-ribose since I run through it so quick, I've been taking it all day long on the days where I take it, doses in excess of 20 grams, everyone seems to recommend 15 grams per day, don't know why, I even looked it up once and didn't come up with any reason. I have read that people who have gut bug issues might want to steer clear or try to absorb it sublingual if in serious need. I've taken to brushing my teeth more often since starting the ribose all day thing, setting alarms on my phone an all.

    I just did a test through quest labs for coq10 and carnitine, CoQ10 is right on the border of being low whereas carnitine is normal. Been trying to find alternative medicine tests like these that my insurance will cover, hoping that quest is the one, if anybody knows others it would be appreciated. As I've said though, I haven't gotten the statement or possible bill from my insurance so I can't say yet if it will work but would be great with how much money tests cost. I'm gonna up the dose of Coq10 then retest, if it isn't up then I plan to try taking it different ways, have heard of people taking a liquid form sublingually and getting good results, maybe I can get my doc to give coq10 shots if that doesn't work.

    Usually take 200mg of CoQ10, I have tried doses as high as 1,200mg

    Been considering Adenosyl B12 but haven't tried it yet, what you say about it increasing energy sounds very interesting.

    I've gotta take some iron as well, my ferratin's low, have had it tested before but this is the first time it has been low, I've read Iron is one you really don't want to over supplement on as it can cause serious side effects which have the possibility of being fatal
     
  10. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I take a minimum of 400mg of CoQ10, which is where I notice a benefit. But I've often taken 600-800mg a day or higher. Food supplement doses don't do anything for me.

    I've edited this post because the bulk supplier I mentioned in passing is no longer offering a big discount. Must have just been a brief period, and I missed out, sadly.
     
    Last edited: May 24, 2017
  11. Kathevans

    Kathevans Senior Member

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    I have discovered over time that what I have been really deficient in is Adenosyl B12; I hope this information can help you...

    This thread speaks to energy and Adenosyl B12 issues: http://forums.phoenixrising.me/inde...denosylcobalamin-make-me-feel-stronger.18903/

    And in particular a response by richvank:

    Hi, exchoc.

    Adenosylcobalamin is used in the mitochondria, especially in the muscle cells. It acts as a coenzyme for the methylmalonate pathway. This pathway is used to feed several fuels into the Krebs cycle, to support making ATP by the mitochondrial. ATP supplies the energy to drive muscle contraction. Some of the fuels involved are several of the amino acids, propionate, and the odd-chain fatty acids.

    This pathway feeds the fuels in at succinyl CoA, which is downstream of the partial block at aconitase, which limits the use of carbs and fats for fuel in ME/CFS. So boosting adenosyl B12 can make a big difference in this disorder.

    In the simplified methylation protocol, hydroxo B12 is used, and the cells can normally convert it to both methyl B12 and adenosyl B12, but these processes can be slow if glutathione is badly depleted. In this case, adding adenosyl B12, as Freddd does in his protocol, can make a beneficial difference.

    Best regards,

    Rich

    richvank, Aug 15, 2012
    #4
     
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  12. AdamS

    AdamS Senior Member

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    I don't mean to come across too negative here but I see supps like this as a band-aid really, they don't seem to get at the disease process. Even if I load up on D-ribose, it makes me feel a bit more alert at rest but as soon as I increase metabolic flux (e.g do any form of exercise) my body just can't adapt to the demands and is left a shaking mess...it's super frustrating.
     
    Last edited: May 24, 2017
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  13. gabriella17

    gabriella17 Senior Member

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    Wow.. 400 mg? I think mine is only 100 mg per day. I would like to try the 400 mg but it is so expensive!

    Does anyone know if the it's worth getting the more absorbable but more expensive form of ubiquinol?
     
  14. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Basically I was taking a minimum of two 200 mg tablets. Unfortunately the price has gone up recently, and rather steeply. I've also tried Mito Q, but it did not have the same effect, even although it's supposed to be stronger. I found ordinary CoQ10 better.
     
  15. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I take ubiquinol 2x300mg daily. I have no idea whether this is really doing anything. The things that have worked the best seem to be the d ribose, B12 (hydroxy), magnesium and creatine. I also take ala but I'm also unsure whether this is having a major effect.
     
    Ysabelle-S likes this.
  16. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I really must try the d-ribose again. I've heard some other people say it helps. I couldn't really tell. But I think next time I would try and take it in smaller doses more often through the day.
     
    arewenearlythereyet likes this.
  17. Hip

    Hip Senior Member

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    It is due to the well-known Third Law of Chronic Fatigue Syndrome, which states that:

    For every action you take to heal yourself, the illness responds with an equal and opposite reaction, designed to thwart your efforts!

    It certainly seems that way sometimes, as many patients have found that supplements or medications that worked quite well initially cease to have any effect after a while. Although sometimes you do find a medication that consistently helps, even after years of use, so don't get too disheartened when supplements or drugs stop working. If you keep looking, you will hopefully find things that benefit on a more permanent basis.
     
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  18. overtheedge

    overtheedge

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    I'm still interested in this, any new experiences or info on mitochondrial supplements will be read with great enthusiasm
     
  19. Elahn

    Elahn

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    According to this, sublingual D-Ribose wouldn't absorb well. 15g/day was used in an open label pilot study for FMS/CFS, which is probably why people suggest that amount.
     
  20. pattismith

    pattismith Senior Member

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    I started CoQ10 a month ago together with many other supplements,
    then I stopped a few days ago du to a lack of stock.
    2 weeks after I started, evening fasciculations of my muscles stopped suddenly...

    Yesterday I did an effort test for 3/4 min (steps), my muscles were burning in my legs.
    Today I can hardly walk, my legs are all stiff, and my abdominal muscles are again painful (they wern't anymore for some weeks!)....

    So it could be that CoQ10 was efficient for me.

    I am not sure because before I stopped it, I also stopped Thiamine Pyruvate (I was taking 700 mg 3 times a day).

    I started Benfotiamine some days ago 300 mg per day, It might not be enough!

    Anyway, I just received the DCO I purchased, so I start it tonight and will let you know what happens!
     
    overtheedge likes this.

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