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

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

  1. Chris

    Chris Senior Member

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    Thank you!

    Rich, many thanks for a very helpful overview of a large issue. I am one of those who have been puzzled by the Q10 question; I am tempted to take it because there is good evidence for its potential benefit to hearts, but have found--as Freddd predicted--that taking it together with Methylcobalamin raises blood pressure--in my case quite noticeably. I have been wondering whether the same would happen if I went back to Hydroxycobalamin, but perhaps-or probably--the response would be the same. I suppose the rise in BP could be a compensation for reduced heart output? Anyway, I think in view of your at least partial agreement with Cheney on the probable unwisdom of adding Q10 I shall now abstain with a clearer mind.
    Thanks again, and best wishes, Chris
  2. richvank

    richvank Senior Member

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    Hi, Chris.

    I think it's probably true that the elevation in blood pressure is a compensation for low cardiac output.

    In my hypothesis, the low cardiac output in CFS is caused by two things:

    One is the low total blood volume that I believe results from the central diabetes insipidus in CFS (not the same as diabetes mellitus, which involves insulin and blood glucose). The low blood volume causes a low venous return to the heart, and the heart can only pump out what it receives.

    The other cause is the diastolic dysfunction, which limits the filling of the left ventricle, and that lowers the stroke volume and hence the cardiac output.

    In my hypothesis, both these factors are caused by glutathione depletion. Supplementing Co Q-10 does not address the cause of the glutathione depletion, and constricting the blood vessels to raise the blood pressure is a way to compensate for low cardiac output, in order to still maintain flow of blood to the brain, against gravity.

    Supplementing Co Q-10 may be assisting either in adrenaline secretion or in providing more ATP production in the smooth muscle cells surrounding the blood vessels, or both, and those would tend to raise blood presssure.

    Rich
  3. dannybex

    dannybex Senior Member

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    Treat the root causes/issues...YES.

    Thanks Rich. IMHO, this is a great example of why the Fibro & Fatigue Center's shotgun "test-for-and-then-treat-everything-thing-at-once" approach (with an emphasis on hormone replacement therapy) never made sense to me and perhaps explains why some people were quite unhappy with their experiences there. (I believe someone has written of her experience of having a heart attack that may have been a result of exactly the scenario you describe above...)

    ???
  4. starcycle

    starcycle Guest

    My pre-virus-like CFS started from a crash following a doctor improperly taking me off steroids. The next day I went into a kind of hypoglycemic crisis, got extremely shaky, disoriented, off-balance, etc. All I could think of was stuffing food into my mouth, at a kind of pre-cognitive level.

    After I ate, I was *extremely* tired, and went to lie down and sleep for a while. When I woke up a few hours later, I wasn't really any less tired than when I crashed, and I never got better for months after that, until there was some gradual improvement from taking adrenal cortex extracts, etc. But from then on I always had post-exertional malaise, much less endurance, sleep disturbance, etc.

    Then flash forward to a few years later. I drank some cranberry juice one day (yes, cranberry juice), and the next day I crashed really bad again, similar to the first time. After being wiped for about a week, I upped my co-q 10 dosage from 100mg. to 200mg, and I had an immediate improvement.

    So in my experience there is some kind of glucocorticoid dysregulation that somehow affects cell energy and glucose metabolism, electron transport chain functioning, etc. Most likely this originates almost totally neurologically, and the cellular metabolic effects are actually only secondary. Something in the neurology related to glucocorticoid receptor function and whatever downstream neurobiological effects that has (e.g., on NMDA receptors, catecholamine function, etc.) is driving it. That's why some people don't tolerate co-q 10 and have BP effects, etc. -- they don't need it! They need something else specific to their metabolic profile, blockages, etc. The driving factor is neurological, HPAA, NMDA, etc. and then the downstream effects at the cellular level manifest differently depending on the profile of the individual. Some people have certain electron chain blockages, and need co-q 10, some need B1, some have methylation issues and need folate or b-12, etc. The primary dysfunction is neuro, the secondary effects are just "amplifications" of the idiosyncratic dysfunctions of each individual (imho).

    I also know this neuro connection is true for me (for pre-virus CFS, maybe not viral CFS) because about a year after the initial crash, I got an EEG neurofeedback amp, and did some neurofeedback. After one of the early sessions, something "clicked," and I had complete and total CFS remission, 100 percent gone, energy back to normal for about 4 days. I was completely stunned. Just smooth, unlimited "normal" energy all day, it was really remarkable. The NF practitioner I was working with didn't have a lot of experience with CFS, and recommended I continue with more training to consolidate the gains, etc. (their model consists usually of the idea of long-term training with small incremental gains), but that whacked something out and I went back into the CFS state. Placebo effect? Maybe. But no matter how I "tested" it, the fatigue was totally gone. And you really can't fake that, even to yourself.

    So apologies for morphing into that neuro tangent, but I wanted to tell my experiences with co-q 10, which definitely has pro-energy effects in CFS, imo and experience. I've also noticed subtler improvement from it over the years, most often in a negative way from feeling noticeably worse after not taking it for a while, and then getting more again and noticing an immediate boost. I now take at least 100mg. a day without question and usually 200mg. a day (Jarrow). I wouldn't go much above that orally, as co-q 10 can be a pro-oxidant at higher doses - although I think it would be very interesting to think about IV co-q 10 and what benefits that might have. Has anyone had or heard of co-q 10 being administered IV?
  5. starryeyes

    starryeyes Senior Member

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    No Nancy Klimas never suggested a brand. That's great CoQ10 is working well for you. How long have you been taking it? Also, are you able to handle taking most supplements and/or prescription meds?

    I think your theory that you wrote above makes a lot of sense. It's great that CoQ10 works for you. Your story is fascinating to me and lends some real insight into what's going on with CFS. I've never heard of IV CoQ10. Jarrow is an excellent company, I think their products are high quality.

    Does your name pertain to Astronomy?

    tee
  6. velha508

    velha508

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    Just wanted to comment that, if I remember correctly, Freddd's rise in BP associated with CoQ10 only happened early on in his treatment. He did have high BP at the time, he now has a very healthy low normal BP. I also believe he was later able to add CoQ10 without issue - I do not remember the timing on this, but maybe he can speak to this himself.

    I also found this seemed to happen, the rise was favorable to me as I have low normal BP and actually felt better with the increase in BP. After a short while, my BP returned to it's normal, low normal level of ~105-110/65-70.
  7. Chris

    Chris Senior Member

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    that BP thing

    Hi, Velha508; thanks--I will go through that lengthy thread again --sigh! My BP is OK most of the time--just periodic spikes --sometimes very high--and Q10 does seem to be one of the triggers; have been on and off the methylation protocol for nearly a year now--don't know if now is early or late in the process! Best, Chris
  8. Sing

    Sing Senior Member

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    Thank you, Richvank, for your long clear exposition, and you others for following this topic so thoughtfully.

    In reply to Teejkay, who wrote to me: That's great CoQ10 is working well for you. How long have you been taking it? Also, are you able to handle taking most supplements and/or prescription meds?

    I have taken CoQ10 off and on when I feel I can afford it and when I have to do something which requires more energy, such as travel of some kind.

    I can tolerate most meds and supplements--except for things which upset my stomach, like Ibuprofen or even Vitamin C, unfortunately. Also I don't use sedative type meds like the Valium type, for sleep, or "muscle relaxers" for pain, anymore than I would use alcohol, as my brain barely stays "above water" as it is. The last restriction on my ability to take meds and supplements has to do with cost and my resources. My current insurance now covers most of the meds but I have to pay for supplements myself and can only do a little of this--

    I expect a lot of us would answer similarly!

    Cecelia
  9. starcycle

    starcycle Guest

    Sure, why not. And cycling, and a Jeff Beck song, and where we come from... :)
  10. Freddd

    Freddd Senior Member

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    Hi Velha,

    Yes, I had an experience with CoQ10. I had first tried it in the early 80s or so, before I had the 16 year crash in 1987 but was definitely symtomatic with FMS and quite a few other symptoms but minus the severe fatigue. I was supplementing many things at that point. It did quite literally nothing that I could tell and discontinue because of cost. Then I tried it again about 4 months after starting methylb12. At that time my BP was and had been around 135-150/85-90. Within hours it shot up to 190/110 and stayed there. About 12 hours after I didn't take it the next day, 36 hours after the original dose my BP started dropping and by 48 hours was back to normal. I repeated the test a couple of weeks later with identical results. Then several years later after I added adb12, SAM-e, l-carnitine fumarate, methylfolate and my mitochondria were quite functional due to the adb12 and l-carnitine fumarate and I had a lot of healing by the next time I tried CoQ10. By this time my BP had dropped to around 105-110/65-75 and my BP did not change. And it did not appear to do anything perceivable at all.
  11. starcycle

    starcycle Guest

    Sounds exactly like what I suspected before. If you're getting those kinds of reactions, you don't need co-q 10 right now -- or stated differently, you might perhaps need it, but you need to address other metabolic blockages or deficiencies first. If you just pump co-q 10 into the electron transport chain with other things blocked or out of balance, it apparently can really throw off your cell metabolism. From the reports here it seems like the most common expression of that is some hypertension.

    I also want to add something I forgot to mention before related to that second crash I talked about following the glucose loading with the cranberry juice. I've had some weird kind of fibromyalgia-like almost burning pain in my hamstrings, back of the arms, chest and back muscles for a few years, and with the crash those pains intensified a lot. After increasing the co-q 10, they reduced by at least 1/2 right away. So there is no doubt for me that the co-q 10 is definitely active. I take it now even if I don't notice anything, because i know that it's at least maintaining levels "behind the scenes."

    You can see very clearly that it's an important co-factor between complex I and II and complex III of the ETC -- if we could find a way to boost Cytochrome C we'd probably all get a massive improvement! Something seems to be broken around there in CFS/ME, though.

    [​IMG]
  12. starryeyes

    starryeyes Senior Member

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    Thanks for your answer Cecelia.

    Cool, I like Jeff Beck. :) It's interesting to learn more about CoQ10. I can't tolerate the other things you all take to make it work. :(
  13. starcycle

    starcycle Guest

    Do you take any B vitamins? How about NADH, have you ever tried that?
  14. Freddd

    Freddd Senior Member

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    Hi Starcycle,

    Something I didn't make clear in my earlier post. I am now fully recovered in terms of FMS/CFS/ME thanks to the active b12 protocol. I still have some residual neuropathic damage and traumatic damage from a car wreck. When I tried the CoQ10 just a few months nto methylb12 I was just starting to heal from a 16 year total crash and decades of illness before that and my body was all messed up.

    One of the things I noticed with the active b12 protocol is that many supplements, foods and therapies work very differently with the active b12s in ones body. Beforehand nothing ever made any difference. Afterwards, all sorts of things did. I no longer have all the strange and shifting symptoms of those problems. I haven't been ill in 6 years. I've been able to discontinue most medications as no longer needed. Now I'm just getting old and will never regain the 20 lost years.
  15. starcycle

    starcycle Guest

    Active B12 protocol = hydroxycobalamin injections? or some other protocol, sublingual methyl B12, etc.? Is this related to the methylation protocol someone here is an expert on? Can you link me to your protocol or describe it (PM if you want). I know I have methylation defects, but I'm having trouble sorting those out.

    That is really remarkable that you made such a recovery, though. I'm really glad to hear it, I only wish it were that easy for all of us -- and not intending to imply that it was easy to go through all that, only that the answer apparently ended up being an easy solution, or I hope it was. :)
  16. richvank

    richvank Senior Member

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    To Starcycle re: electron transfer chain in CFS/ME

    Hi, Starcycle.

    Thank you for posting the diagram of the electron transfer chain (respiratory chain).

    For what it's worth, in the GD-MCB hypothesis for the pathogenesis of CFS, oxidizing free radicals partially block enzymes in both the Krebs cycle and the ETC (respiratory chain). I think that Marty Pall's NO-ONOO theory includes the same thing.

    I have suggested that the rise in concentrations of the oxidizing free radicals is a depletion of glutathione. Marty Pall has proposed that a rise in both nitric oxide and peroxynitrite in a vicious cycle is involved. Paul Cheney believes that something (perhaps a virus) is inhibiting the antioxidant enzymes.

    Whichever hypothesis is correct, it is very clear that oxidative stress is elevated in CFS, and it is also clear from published research that oxidizing free radicals are able to react with these enzymes and partially block the production of ATP in this way.

    The results of testing of mitochondria in PWCs by Dr. John McLaren Howard of Acumen Lab in the UK has shown that there are several other issues that come into play. These include blocking of enzymes and DNA by toxins, pH shift to lower values, disturbance of the normal concentrations of calcium, magnesium, and zinc, and presence of DNA that appears to be viral. I believe that all of these effects are downstream of glutathione depletion.
    When glutathione goes down, its normal functions are not performed adequately, and this includes protection against oxidative stress and toxins, and support for the immune system. When the oxidative stress lowers the ATP production rate, there is not enough energy to power the membrane ion pumps, and that leads to changes in normal concentrations of ionic species in the cells and in the mitochondria of the cells.

    Best regards,

    Rich
  17. starcycle

    starcycle Guest

    Hi Rich - thanks for that explanation. I'm pretty well familiar with cheney's work and the glutathione connection, pall's peroxynitrite hypothesis, etc. As someone who was mercury poisoned and therefore has questionable glutathione status as it is, that's been a battle for me for years. I once had a glutathione injection to try to increase my levels that caused a severe allergic reaction, leading me to have to go on steroids for awhile just to be able to eat any food. I also had a cysteine backfire from NAC that caused razor-blade pains in the lungs for 3 months, apparently from having damaged the hemoglobin that then takes 3-4 months to regenerate. I'm allergic to whey, so altogether it's been difficult to raise glutathione levels. How do you suggest people raise their levels? Btw, what does GD-MCB stand for? Thanks.
  18. Freddd

    Freddd Senior Member

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    Hi Starcycle,

    http://forums.aboutmecfs.org/showthread.php?t=188&page=84

    At the beginning of the thread are the basics that Cort put together from some of my original posts on MY STORY.

    Start at the end and you will see people up to several months into it and having results. It most certainly has nothiong at all to do with hydroxyb12. It uses the two natural active b12s, methylb12 and adenosylb12, specific brands and a specific techinque, that are tested by hypersentives as espcially effective. Also, a load of other supplements, but not all at once. Check your symptoms against the symptoms list at the begining and post your story and symptoms, and what you have been doing and let's talk about it.
  19. starcycle

    starcycle Guest

    Thanks very much. I'm going to have a look at that. Appreciate it.
  20. richvank

    richvank Senior Member

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    Hi, Starcycle.

    GD-MCB stands for "Glutathione Depletion-Methylation Cycle Block." It's a hypothesis that I first presented as a poster paper at the 2007 IACFS/ME conference. I suggested a treatment protocol based on it shortly after that conference (extracted from Dr. Amy Yasko's treatment for autism), and have since cooperated with Dr. Neil Nathan to conduct a clinical study of this treatment, which was reported at the conference earlier this year. You can find all my papers in the files section of the Yahoo cfs_yasko group's website. Quite a few are also on Cort's website.

    Basically, the treatment emphasizes stimulating the enzyme methionine synthase in the methylation cycle, which is partially blocked in nearly all PWCs. This is upstream in the sulfur metabolism from glutathione synthesis, and we have found (just as was first found in autism by Jill James et al.) that when the methylation cycle is restored, glutathione comes back up automatically. This treatment does use hydroxocobalamin, which the cells are able to convert to the active coenzyme forms, so long as a person has normal B12 processing enzymes.

    freddd, with whom you are communicating, uses a somewhat different approach that is applicable to a wider variety of disorders than CFS alone, including people who do not have normal B12 processing enzymes. He uses higher dosages and uses the coenzyme forms of B12, rather than hydroxocobalamin. But for people with CFS, it addresses the methylation cycle block, also. freddd's protocol reportedly has been developed by laborious trial and error. The protocol I have suggested is based to a larger degree on trying to understand the biochemical pathways that are operating abnormally in CFS, and addressing specifically what appear to be the root issues. It is interesting that the two approaches have led to treatments that have a great deal in common, though there are also differences, which we have been kicking around.

    Best regards,

    Rich

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