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Very Sensitive to Mitochondrial Supplements. Why?

Discussion in 'General Treatment' started by Sherpa, Apr 1, 2014.

  1. Sherpa

    Sherpa

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    I'm a 37 year old guy. I have mostly recovered from AFS (adrenal fatigune syndrome) by following Dr. Lam's protocol of taking vitamins, doing yoga, meditation, low carb diets, etc. But I still have low energy. I would describe my present condition as mild CFS.

    The apparent cause of my CFS is oxidative stress after 8 years of an extreme lifestyle (workaholic, athletics, partying). During this time I also used (not abused) stimulant ADD medication to help me work and study.

    My main CFS symptoms are photosensitivity & PEM.

    I am fairly strong - I work 35 hours a week, do hot power yoga, go on dates, etc. But on the evenings and weekends my mitochondria can't produce enough energy to do "extra" activities. I have to lay around and recover and can't live a normal life - only working, housework, exercise, rest - "surviving."

    I tolerate Vitamins C, D, E and Bs... magnesium, ashwaghanda, licorice, thyroid glandular, astaxanthin... very well. I tolerate most supplements at normal doses except mitochondrial supplements. I seem to respond well to liposomal glutathione and glutathione promoting substances (NAC).

    the standard CFS supplements produce more energy in my body... but they are many intolerable for one reason or another.

    D-ribose - 750 - 1500mg works but is very short acting, causes unpleasant "crash" when it wears off very suddenly. The standard 5 gram dose is unbearably overstimulating.

    Acetyl-L-carnitine - 500mg makes me anxious and WIRED... pacing, shaking, tweaking out. Yuck!

    NADH - 2.5mg is tolerable and works occasionally, but taking it on consecutive days causes "tingling" in my extremities, and a "something just isn't right" feeling that is hard to describe.

    Swanson Cardioplex - On Sunday at 10 am I took this low dose, Ribose-Carnitine-Q10-Magnesium pill and it shot my energy WAY up... enough to get me working on household projects. But by 3pm I totally ran out of steam. I was flagging, dragging and super depressed. I'm sure a re-dose would have fixed me, but I didn't like how fast it dropped off.

    NAC - 600mg gives a gentle uplift in mood, libido, energy for several hours. Works as described, no bad effects. But not really strong enough to get my energy levels close to normal.

    CoQ10 - Yesterday I took 25mg of liquid in the AM and it was AMAZING. I felt loads of energy rushing through my body, full of vigor. But by 5p.m. I was feeling anxious, overloaded & uncomfortable. It was a little hard to fall asleep. I woke up feeling a little bit frazzled (similar to over-exertion feeling) the next morning. Today I took 12.5mg of CoQ10 formula and it seems to be effective, but not overwhelming. I feel very good, spring in my step, positive, even caught myself humming & signing. I am really hoping that I can go "low and slow" with Q10 and tolerate it. Please God!


    Based on my case history above - Can anyone please help or interpret why I may be having this sort of sensitivity reaction, what this means, what I should do or try?
    Last edited: Apr 1, 2014
    merylg likes this.
  2. Martial

    Martial Senior Member

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    look into methylation, it could be that you are having issues in that regard. You can get a 23andMe test done to find out your genetic COMT mutations and get a site to run results for you. If you are having methylation issues you would need to address this before anything else to recover.

    There is a guy named Rich who used to post here that went very into detail about this, unfortunately he had recently died unexpectedly R.I.P. The other guy named Fred makes a separate methylation protocol and it is the one I used. You can find all this info in the methylation section of the site, also Dr. Rob Lynch I believe of Mthfr.com is very helpful.,
  3. caledonia

    caledonia

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    I would suggest getting a Nutreval test. There is a nifty Kreb's cycle section that will tell you exactly what's going on with your Kreb's (energy) cycle. You may be taking too much, or you may not actually need those supps. Or you may have to dose in smaller doses more often. You can see all what the Nutreval tests by looking at the Nutreval Interpretation Guide in my signature.

    There may be other reasons you don't have energy. You may be lacking in B vitamins (even though you're taking them, all forms are not created equal), you may have mercury or other metals. There could be problems with taking glutathione directly causing problems, such as feedback inhibition or lack of NAD creating more oxidative stress (see Ben Lynch's latest videos linked in my signature).

    It's best to take folate and B12 to create methyl groups and later on glutathione. The fact that CoQ10 is helpful tells me that you're not making SAMe, which means you're not making methyl groups.

    There are many roadblocks to getting the correct doses and types of folate and B12 and the various co-factors so that you're making methyl groups.

    I have many methylation links in my signature. Check those out starting with the Methylation Made Easy videos to get an overview. Also check out Roadblocks to Successful Methylation.
    helen1 and WoolPippi like this.
  4. Sherpa

    Sherpa

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    Thanks guys.... for the information!!

    Methylation looks overwhelming and daunting to understand, but I suppose anything can be done one day & step at a time.

    Nutreval and 23andME tests sound interesting.
    How much are these tests in the US, approx? The web links did not have prices.

    SAMe is another supplement that can be overstimulating for me. I have taken it for "depression" back before AFS / CFS and it brightened my mood but made me wired, sleep problems, etc.

    Does overstimulation by SAMe indicate anything about my methylation status?

    During periods of high stress I recently had a couple outbreaks of angular chelitis, a skin condition, that I read could be caused by folate deficiency.

    Does this indicate folate supplementation?
  5. Martial

    Martial Senior Member

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    It would indicate folate deficiency probably brought on from taking in folic acid supplements, or foods that are enriched with it. I had very many folate deficiency symptoms that ran for a large part of my life until I got on a good dose of methyl folate. The most notable were allergy like symptoms that would be around all year, usually the worst in the morning... I reacted very badly to folic fortified cereals and the like but never put the two and two together till I got off all folic acid foods/supplements, and finally got proper methylation going.. I am still sick but thats because I have a chronic infection I am currently treating but if my issue was with methylation and there was no infection involved I am sure I would be 100% better now. Having proper methylation has put an end to the major herxes of treatment for me and just over all feel much better.

    Just take your time and really try and learn everything well, I honestly feel like methylation is part of every chronic illness, and health issues, for example connective heart failure due to prolonged methylation block, raised homocysteine levels, alzheimers, and parkinsons possibly having a huge correlation with low CSF cobalt levels, autism spectrum disorders and methylation issues, etc..

    Everything you are mentioning for the most part are methyl donors so they impact methylation in some way or the other, this is why people either feel really good on them, or like shit. Because it either helps for some, and for others with other comt mutations it can make them a bit worse. The best thing to do is get a 23andMe test before anything else and find what exactly you should do that would work best for your own unique case.

    I find Fred's protocol the most effective for myself, but I had to back off of it for a bit of time as I was producing too much methionine without supplementing enough P5P (b6) this converts methionine to the essential nutreints needed for cell growth, without it I created a bunch of methyl groups that were just not getting any use. I also had some ammonia issues and sulfates that needed de toxing before the treatment, these were a result of toxins from the lyme disease. If you have a similar condition and start methylation too hard the de tox will kick your ass lol!
  6. adreno

    adreno 3% neanderthal

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    Angular chelitis is usually caused by vitamin B deficiencies, though it could also be zinc:

  7. xrunner

    xrunner Senior Member

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    @Sherpa
    Many of us report too much oxidative stress, a good measure of it is the level of oxidised glutathione from the Methylation Pathway Panel but it is an effect of something else going on at the immune system level rather than a cause.

    Regarding your sensitivity to mitochondrial supplements I used to have similar reactions as feeling overstimulated, unable to relax and uncomfortable.
    Bear in mind that all of those supplements have some stimulant properties on the sympathetic nervous system which for some of us is already overstimulated and so those supplements tend to push it further into overdrive.

    Persisting will likely to lead to crashes, which can be quite severe and make recovery more difficult; that is what happened to me.
    However, the good news is that, as you address whatever is upsetting your immune system and that tends to normalise, the rest will also follow irrespective of your methylation or other factors.
    merylg likes this.
  8. Sherpa

    Sherpa

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    @xrunner

    I think that just 2 days of microdoses (25mg then 12.5mg) of CoQ10 agitated my system a little bit. It sure did give me a lot of energy though... but it feels like my system "can't handle it right."

    It's so hard to figure out what to do... some doctors (Dr. Teitelbaum) are like "take an entire tub of d-ribose before you conclude it doesn't work". There have been many cases where I stuck with a supplement that gave me bad initial effects, and my body adjusted happily ever after.

    And apparently methylation involves lots of B12... it seems like it could be very stimulating. :(

    I have already been through "stimulant hell" - years of nootropics, caffeine, ADD meds, overwork, grueling workouts, carbohydrates.

    If it were up to me, I would NEVER take another stimulating nutrient in my life - EVER. Period.

    But now, after 2 years of being sick and lonely as hell, I have a nice + cute girlfriend. While she is very understanding, I feel constant (self-imposed) pressure to 'keep up' with her and be normal, not cancel dates, not act "depressed", be fit.. keep the housework up... not be a slob...

    so I am driven to try new things for curing my fatigue.

    You mention "whatever is upsetting my immune system"

    As far as I know, my immune system is strong.. don't get colds.. don't have obvious infections. Was tested for h. prylori. I'm initially inclined to believe this is all from "a lifetime of constant oxadative stress."

    Are there any comprehensive tests (like Nutreval) that show what could be upsetting my immune system?
    Last edited: Apr 2, 2014
  9. xrunner

    xrunner Senior Member

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    I don't have an answer to that question. But I can talk about what was upsetting my immune system.
    First mercury and lead as I had had amalgams for many years. Then a few chronic infections including Borrelia (Lyme), Bartonella, Chlamydia Pneumoniae, CMV, unknown parasites and other microbes I do not know for sure. There's still something bothering my system (although not sure what) as I'm only partially recovered.
    One last thing. I understand all you say about feeling pressured to function and being healthy but the safest way to increase your energy levels is through anything that, at the same time, increases your sense of wellbeing and relaxation. Anything else is likely, long-term, to be counterproductive
  10. Sherpa

    Sherpa

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    I have no idea what's bothering my system, either.

    My digestion seems OK / decent. Diet is excellent. Immune system (in terms of colds, obvious infections) seems normal. Was tested for giardia & h. prylori = negative. I have spent the past 2 years doing yoga regularly... which has given me a lot of well being and relaxation AND helped raise my energy capacity.

    I'm inclined to believe this condition is all caused by "oxidative stress" - although I am open to digging deeper.

    I think my glutathione levels are low / imparied. When I was rock bottom 2 years ago, I tried liposomal glutathione and I could literally feel my body "sing with joy" after drinking a glass of liposomal GSH.

    Now, more recently, I tried NAC and I got a sense of wellbeing and "this stuff is what my system seems to need"

    which is very distinct from the "Edgy!" feeling I get from CoQ10 - acetyl-L-carnitine - Ribose

    The whole Glutathione Depletion-Methylation Cycle Block (GD-MCB) hypothesis makes sense... but I don't know how I would respond to major doses of B12. It sounds stimulating ;)

    Oh yeah... and in a good scenario, would a methylation protocol make these standard mitochondrial supplements more tolerable? Or would it give me enough energy to make them unnecessary?
    Last edited: Apr 2, 2014
  11. SOC

    SOC Moderator and Senior Member

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    Scientific evidence doesn't support the theory that ME/CFS is all caused by oxidative stress. If it oxidative stress was the problem, many of us would be cured by now. That isn't to say that dealing with oxidative stress won't improve some symptoms. :)

    It's clear you have fatigue, but that is not what defines ME/CFS. PEM is not just fatigue or exercise intolerance, as you can see in the extract from the International Consensus Criteria for Myalgic Encephalomyelitis below.

    I mention this because if you don't have ME/CFS as described below, you may very well have another fatigue-causing condition which is treatable. Too many GPs slap the CFS label on anyone with fatigue and then don't do the necessary investigation to eliminate other fatigue-causing conditions.

    Pages 14 and 15 of the ME/CFS Primer for Clinical Practitioners describes some of the testing and differential diagnosis needed to identify other fatiguing conditions before giving an ME/CFS diagnosis.

    My advice to anyone is not to accept a CFS, ME/CFS, or ME diagnosis unless you clearly meet the criteria. If you don't have PEM (aka PENE), neurological impairments, immune/gastro-intestinal/genitourinary impairments, in addition to energy production/transportation impairments, it's possible you don't have ME/CFS and should insist on further investigation by your doctor. Wouldn't it be terrible to find you've been living with a perfectly treatable condition making life difficult for you just because your doctor didn't bother to fully investigate?

    I'm not saying you don't have ME/CFS. You very well could, and if you do, you have my sympathy because it's a miserable and difficult to treat condition. I'm just suggesting that given what you've said above, you might have a different, treatable condition. That possibility is worth looking into.

    Sherpa, heapsreal and NK17 like this.
  12. lansbergen

    lansbergen Senior Member

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    I have to disagree with you.

    The immunemodulator I use is a superoxide scavenger. I could not put the pieces together untiill I found superoxide is a defence meganism and SOD2 dificiency is associated with the pathogen I suspect.

    Maybe you can look at what happens with mice lacking the SOD2 gen.
  13. SOC

    SOC Moderator and Senior Member

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    Perhaps I was not clear. I was responding to the statement
    (my bolding)

    Science does not support that MECFS is all caused by oxidative stress. Yes, oxidative stress exists in ME/CFS and we benefit from dealing with it, as I said above. The science does not support that oxidative stress is causal.
  14. lansbergen

    lansbergen Senior Member

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    The infection pathogen is the cause and the superoxide increase in reaction to it can do much damage. The trick is to have enough superoxide to fight the infection but keep it low enough to prevent to much damage.
    Sherpa and SOC like this.
  15. caledonia

    caledonia

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    23andme is $99. Nutreval is around $800. Insurance may possibly pay for it.

    It sounds like you took too much and created too many methyl groups causing overmethylation. You might need a little, but not more than that. With this methylation stuff, a lot of times less is more.

    You could have an actual methylfolate deficiency, or you could be getting too much "folic acid" from diet or supplements. People with MTHFR mutations don't metabolize "folic acid" well. It can either float around unmetabolized and possibly cause cancer or it can block methylfolate and possibly cause a deficiency.
    Sherpa likes this.
  16. Sherpa

    Sherpa

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    Holy cow.... people here are so helpful.

    I feel totally blessed... no one in "real life" seems to know anything about this at all.

    @SOC - I may not have full blown CFS, it could be something else. It would be terrible if I misdiagnosed it or failed to investigate it fully. My GP is a nice enough guy but he doesn't know much about fatigue treatments. I currently don't have, or know of, or know how to afford a high-grade specialist. It's something I'll look into. Someone on another thread advised me to see a cardiologist and immunologist to try and rule out heat problems and lingering infections.

    @caledonia Thanks for ALL the great info. The links in your profile are fascinating. I will try my best to understand this stuff and see where it applies. The NutrEval test looks interesting, no doubt. But I am generally mistrustful of medical tests. Was your Nutreval diagonstically helpful? Invaluable? Just interesting?

    For starters, I just want to see how I respond to B12. My serum test a few months ago showed "normal" levels, whatever that is worth. (I don't have much faith in most tests.) I have tried many other vitamins, but never explored B12
  17. SOC

    SOC Moderator and Senior Member

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    If he's a good guy, you can probably show your GP the ME/CFS Primer and have him go through the common tests to rule out other conditions. I'd certainly want to be tested for thyroid and adrenal problems and OI, all of which can cause fatigue. If you read this article here at PR, you can find out about less typical presentations of OI -- ones your GP might not recognize.

    Most immunologists would not know enough to properly test for the immune dysfunctions found in ME/CFS. You'll want to be educated and go in well-armed with information about what tests you'd need before you waste time and money on an immunologist. It is important to find out if you have immune dysfunction, just don't expect your average immunologist to know what to test for.

    Be aware that if you do have ME/CFS, you are likely to waste money and energy on local specialists who don't understand the kinds of dysfunctions found in ME/CFS. They don't look in the right places, so don't find anything wrong and tell you you're just fine when you're not. You've then wasted a lot of money for nothing but a note in your record calling you a hypochondriac. :rolleyes: We've all been there and regret wasting the time, money, and energy. It usually ends up being cheaper to go to the ME/CFS specialist right off the bat.

    If there's a top specialist near you (Miami, NYC, Reno, parts of California), it would be well worth your while to start there.
    Sherpa likes this.
  18. caledonia

    caledonia

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    The Nutreval has been an invaluable roadmap for treatment (when interpreted by the Nutreval Interpretation Guide linked in my signature).

    My B12 showed up around 800 on standard test (right in the the middle of normal), yet I have many signs of deficiency, and also multiple B12 genetic mutations including the "B12 double whammy" of MTR and MTRR.

    So yes, the testing is almost useless, unless it actually shows low. Some people say that anything below 500 should be considered low. Very high B12 can also mean that there is a lot of B12 floating around unmetabolized and not in the cells.

    You need to pair B12 with folate to start up methylation. So if you've never done this before, all kinds of things might start to happen.
    Sherpa likes this.
  19. Sherpa

    Sherpa

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    About an hour ago I tried 250mcg cyanocobalmin (b12) orally. I am feeling a noticeable, energizing effect already. :)

    I think we might be onto something!

    I'll see how it goes and fine tune as my energy needs become more apparent.

    I don't have the severe, debilitating fatigue that some on this forum are obviously suffering from.

    I may or may not need the full blown protocol.
  20. fngrpntr

    fngrpntr

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    I have recently started taking mega doses of 4 different B12's & am getting energy from that. I wasn't able to tolerate methylfolate until I'd built up my B12 for a couple of weeks, but now methylfolate also seems to help. I've been told that methylfolate needs B12 to do it's work.

    Do you eat red meat? Digest protein well? I asked for more than the usual iron levels & found out my ferritin level was low. I can only tolerate one chelated iron tablet every 3-4 days, but I think that is building up & helping, too.

    Source Naturals makes some great sublingual B vitamins: a B-complex, and B6 (P5P form).

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