1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

CoQ10 deficiency related to multiple ME/CFS symptoms and early mortality

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Dec 21, 2009.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Jan van Roijen posted this to co-cure today. (my bolds and spaces)

    Neuro Endocrinol Lett.;30(4). [Epub ahead of print]

    After reading this, think I'm going back on COQ10 supplements.

    islandfinn:)
  2. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    Co q 10

    In Canada, are there blood tests for COQ10 levels? Or do we have to supplement blindly?
  3. sunshine722

    sunshine722

    Messages:
    16
    Likes:
    0
    Synthetic coq10, Idebenone, is probably better if your find coq10 makes you feel worse. Ideb does better in hypoxic states. Much more powerful so less expensive.
  4. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    Q10 and B12

    Hi--but there is the awkward fact that taking Q10 while doing Rich or Freddd's B12 thing quite significantly raises blood pressure--and noone seems to know why! Any of you serious researchers have a clue? Best, Chris
  5. MargeM

    MargeM MargeM

    Messages:
    28
    Likes:
    0
    http://www.epic4health.com/howtogetlabt.html

    I've never tried this particular lab. I usually have my CoQ10 tests taken at the UCSD lab.
  6. dannybex

    dannybex Senior Member

    Messages:
    2,181
    Likes:
    519
    Seattle
    CoQ10 for hypertension...

    Hi Chris,

    I'm not a 'serious researcher', to say the least, but perhaps it's not the CoQ10 that's causing the increase in blood pressure...

    This meta-analysis of twelve clinical trials showed that coQ10 actually helped lower blood pressure in patients with hypertension.

    http://www.ncbi.nlm.nih.gov/pubmed/17287847

    "We conclude that coenzyme Q10 has the potential in hypertensive patients to lower systolic blood pressure by up to 17 mm Hg and diastolic blood pressure by up to 10 mm Hg without significant side effects."


    Note too that those with normal blood pressure experienced no change. Perhaps (and this is a huge guess) that it helps raise BP in those with hypotension...?

    d.
  7. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    Could someone explain whether or not it is best to take CoQ10 or the extract of it? And suggest dosages. I have read, over 120 mg per day of CoQ10. Also there are big differences among brands. I've read it needs to be in oil and is best refrigerated. It can break down if not well produced or kept.

    The one brand I can count on working is NOW, though I have only tried a few others. This is in the USA.

    Type, dosages, brand?

    Cecelia
  8. dannybex

    dannybex Senior Member

    Messages:
    2,181
    Likes:
    519
    Seattle
    Unfortunately, as with all aspects of this diagnosis, I don't think it's a one-size-fits-all thing. Different dosages depending on one's mitochondrial issues, toxicities, levels of oxidative stress..???

    But personally, the gel-caps, or those mixed with oils, are too pricey. Even the regular stuff is pricey...so I just take the regular, when I can afford it, and make sure to take it at the beginning of a meal (when digestion is strongest), with a little bit o'fat. :)

    I go with the Vitacost brand, which is extremely cheap. The low price automatically raises red flags, but their facilities are GMP certified, and I am trusting, perhaps too naively, that if they, or any company, was found to have a contamination problem, they'd be out of business pretty quick.

    (I think they sell the Now brand as well, as do other online co's.)

    just my two cents,

    d.
  9. dipic

    dipic Senior Member

    Messages:
    215
    Likes:
    10
    Not that I put a whole lot of faith into it, Dr.Cheney says supplementing CoQ10 is bad for us. What to think, what to think...
  10. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    that BP thing...

    Hi, Dannybex; I don't have hypotension--most of the time my BP is just fine while I am doing the Rich / Freddd methylation / B12 stuff; but as Freddd warns, if I add Q10 to that mix, my BP goes up quite noticeably--maybe 15 -20 points systolic. Still wish I understood, and, even better, could avoid! Best, Chris.
  11. MargeM

    MargeM MargeM

    Messages:
    28
    Likes:
    0
    coQ10

    Although I've read that is what Cheney believes, I don't remember reading the logic behind it. :confused: I do know that a friend of my mother's was on a waiting list for a heart transplant (for heart failure) but in the meantime he started taking CoQ10. His heart improved and they ended up taking him off the transplant list.

    I improved sigificantly while supplementing with CoQ10 and L-carnitine and B complex vitamins.
  12. talkingfox

    talkingfox Senior Member

    Messages:
    230
    Likes:
    3
    Olympia, wa
    I've just added c0Q10 to my protocol. It seems to be making me feel really speedy...and not in a good way. Anyone else have this happen?
  13. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    coQ10

    Yes, that's the way I felt - speedy and not in a good way:( - couldn't handle it. That was about 9 months ago, but I've been thinking of trying again.
  14. margib

    margib Senior Member

    Messages:
    190
    Likes:
    3
    Austin, TX
    coq10 made me feel alternatingly a little speedy & exhausted & sick. don't know what this means.
  15. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    CoQ 10 or not

    I've taken CoQ 10 in the past and never noticed anything. Three days ago I started a different brand. The first time I took it I had a brief moment of clear brain and sense of wellness. It was fleeting but welcome. Yesterday was a very low energy day as I've been having for a long time but I felt just a bit lighter. I didn't add anything into my day, just enjoyed my sedentary life-style a little bit more. (What life-style, you ask? :)) Today feels like a crash more brain-foggy, achy, slightly feverish, more pain, inflamed and I can only think it's from adding in the CoQ 10. But, I don't know. I will stop it and see.

    Last year I was diagnosed by Cheney with diastolic dysfunction so I probably shouldn't be taking CoQ 10. But this gets really, really confusing. I'm confused.
  16. txfriend

    txfriend

    Messages:
    34
    Likes:
    5
    WHOA, dipic...

    I am almost positive I read just last night, on the dfwcfids site that
    Dr. Cheney does NOT say it is bad for us; just the opposite, and
    he even gives dosages...check it out, ok? I'm very bad on the
    computer, or I'd link it or paste it here: I don't know how.
  17. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    40
    Melbourne, Australia
    Cheney and CoQ10

    Hi tx,
    You're right that Dr Cheney did recommend CoQ10 for many years. But this year he changed his idea's on it, after testing patients with it using his echocardiograph.
  18. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Thank you all so much for the info you've given. I had ordered Ubiquitol which is the stuff Nancy Klimas said helped CFS patients in here latest lecture and now I'm sending it back unopened because I cannot handle anything that causes speediness or heart probs.

    http://www.lifeextensionvitamins.com/ubiquinol.html
  19. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    Thanks, Dannybex and Teejkay, for the specifcs about types and brands. Did Dr. Klimas actually recommend that Life Extension brand? (I hope I am not straying into the rule about products not being recommended here for sale.) I ask because the quality seems to vary so much. I definitely have a good response to NOW's version of COQ10. It increases my energy in a helpful way, not speedy at all. Most I ever tried was 180 mg., and it is usually 120 mg.

    Cecelia
  20. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    752
    Hi, all.

    Coenzyme Q-10 normally plays a couple of important roles in the cells. In the mitochondria, it serves as a receiver and transmitter of energetic electrons that are obtained from processing foods in the Krebs cycle and are given to the respiratory chain, so that the energy can be used to convert ADP back to ATP, which then supplies the energy to power a large number of biochemical reactions in the cells, including those involved in use of the muscles and those involved in sending nerve impulses. Heart muscle is particularly dependent on Co Q-10 because of its high demand for ATP. Co Q-10 is also part of the basic antioxidant network in the cells.

    In CFS, coenzyme Q-10 was found to be low in the recent Maes et al. study, as well as in a study by Langsjoen et al. in 1993. I've also seen low values in quite a few test results that PWCs have sent to me. Based on my hypothesis (the GD--MCB hypothesis) and review of many lab test results that people have sent me, I believe that the direct reason Co Q-10 is low in CFS is that there is a partial block in the methylation cycle, so that the capacity to carry out methylation reactions is deficient. Methylation reactions are necessary to produce coenzyme Q-10 in the body.

    The question of whether to supplement Co Q-10 in CFS is somewhat difficult to answer. Dr. Sarah Myhill recommends doing so, in combination with several other supplements to support the mitochondrial function (based primarily on the the book by Dr. Sinatra, a cardiologist), in those who test positively for mito dysfunction in the Acumen Lab tests. Other CFS specialists have also recommended Co Q-10 supplementation over the past few years, including Dr. Cheney.

    Some PWCS report benefit from Co Q-10 supplementation, while others find that they cannot tolerate it. Some have tried Idebenone, instead, and found that they tolerated it better and benefited from it.

    Dr. Cheney's views have changed since he started using the echocardiograph to decide what is beneficial and what is not in CFS. This new approach has caused him to switch his position on Co Q-10 supplementation in CFS, and he now opposes it. I have expressed my disagreement with Dr. Cheney's interpretation of his IVRT measurements on the echocardiograph a few times in the past, both to him and on internet boards. I don't believe that a measurement made a minute or a few minutes after administering a substance is a good indicator of how it will affect the biochemistry over the longer term.

    Nevertheless, I share some of Dr. Cheney's thinking about the types of treatment that are beneficial. Both he and I are concerned that it's important to treat at the level of the root issues in CFS, rather than to focus on the downstream issues. He and I both believe that the body is set up to compensate for root issues by making downstream changes. If the body's compensations or adaptations are countered while the root issues are not dealt with, the treatment can actually do more harm than good. An example that Dr. Cheney has emphasized to me in our discussions is something he learned while he was in training. If a person has heart failure (i.e. inability of the heart to pump out blood fast enough) and low thyroid function, it is very unwise to supplement thyroid hormones, because this will raise the metabolic acitivity of the cells, which will place more demands on the heart to carry oxygen to the cells via hemoglobin in the red blood cells. Having a low metabolic rate is actually a big advantage for prolonging life if the heart is not able to put out blood fast enough to supply normal metabolism in the body. So in this case, helping the heart's ability to function is the first thing to do, and then if that is successful, one can then raise the thyroid hormone level.

    As some of you know, I believe that the root biochemical issue in CFS is a chronic partial block in the methylation cycle, which is coupled to glutathione depletion and a draining of folate metabolites from the cells. I think that this is one of the first things that must be dealt with in treatment. In some cases, other things must be dealt with even before this, such as certain nutritional deficiencies, which may stem from dysfunction of the gastrointestinal system, mold illness, or certain infectious diseases.

    Dr. Cheney does not agree that the partial methylation cycle block is the root issue. His views have been changing about what the root issue actually is, but I think he is now focusing quite a lot on the XMRV retrovirus. I think he suspects that the virus inhibits the activity of some of the antioxidant enzymes, and that this in turn produces the observed oxidative stress. I think he believes that the combination of low ATP production and elevated oxidative stress together is what produces the diastolic dysfunction of the heart, which he focuses upon these days.

    My view at this point is that in CFS it's best first to run the Vitamin Diagnostics methylation pathways panel (which won't be available again until about late January, because the lab is being moved). If this panel comes out positive for a partial methylation cycle block, which appears to be the case in nearly all CFS cases, then the person, together with their physician, should consider the Simplified Treatment Approach for lifting this partial block and restoring glutathione and the folate metabolism. This will automatically raise the body's production of Co Q-10. I believe it will also correct the mitochondrial dysfunction and will correct the diastolic dysfunction of the heart as well, which I believe is due to the mito dysfunction that results from glutathione depletion.

    If this does not produce the benefits I've described, then I suggest that further testing is needed to see what is interfering with these improvements.

    In cases in which Co Q-10 supplementation is not helpful, I suspect that it is because the root cause of mito dysfunction (i.e. glutathione depletion) is still present. Trying to speed up the transfer of electrons to the respiratory chain before correcting the partial block in the Krebs cycle may be producing additional oxidative stress in these cases.

    I might add that Dr. Myhill does include methylation treatment in her overall protocol, based on my work, and she has also pioneered treatment of the mito dysfunction, but so far I don't think she has agreed to a connection between glutathione depletion, which is associated with the partial methylation cycle block, and the mito dysfunction. I note, though, that Dr. Howard of Acumen Lab, with whom she works closely, includes glutathione measurement in his CFS testing, so I'm hopeful that they will eventually agree on this connection.

    Dr. Cheney at this point does not believe that glutathione is depleted in CFS, though he was the one who initially convinced me of that in 1999, and though I have shared a considerable amount of lab test data with him that verifies it.

    Prof. Martin Pall does not buy into my hypothesis either. He continues to hold that the nitric oxide--peroxynitrite cycle is the basis of CFS. He does include both B12 and folate in his protocol, together with many antioxidants, but he gives a different rationale for them than the one I believe is primary. He believes that the main role of hydroxocobalamin is to bind nitric oxide, and the main role of 5-methyl THF is to scavenge peroxynitrite in the treatment of CFS. The form of folate he includes is folic acid. For a while, it appeared that he was going to change to 5-methyl tetrahydrofolate, but apparently he has heard that some do not tolerate it well, so I think he is now considering folinic acid. Folinic acid will likely support the methylation cycle pretty well for most PWCs, unless their cells cannot do the conversion from folinic to 5-methyl THF very well. It is a definite improvement over folic acid, though, because the conversion from folic acid to tetrahydrofolate is slow in many people. I believe that the reported difficulties in tolerating 5-methyl THF result from the fact that it is working to stimulate the methylation cycle, which also causes the detox system to work faster and mobilizes toxins into the blood more rapidly. I believe that removing the stored toxins is necessary to restore the person to health, so I think that this "intolerance" is a necessary and temporary evil.

    As you can see, there are still many disagreements among the researchers and clinicians involved in CFS about what are actually the root issues. Hopefully we will be able to narrow these differences as we learn more.

    Best regards,

    Rich

See more popular forum discussions.

Share This Page