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CoQ10+Active B12 (still figuring things out)

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Aineko, Jun 16, 2013.

  1. Aineko

    Aineko

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    Hello everyone,
    I've been reading this forum for few weeks now. I have few questions for people who know much more about biochemistry of vitB12 than I do - there's so much info on these board and I'm slowly finding my way through it, but have exams at the moment and not much time for reading and putting things together :).

    In March this year I got the diagnosis of fibromyalgia, after having progressive symptoms for at least 13 years (I'm 31). After doing a lot of reading on pubmed, I started taking CoQ10 and accidentally discovered that I need much higher dosage than any study suggests - 600mg a day. With this dosage I became pain free. However, once the chronic pain was gone, some other symptoms became much more prominent. In fact, I started getting much more CFS-like symptoms - very prominent PEMs (I do weight lifting. well...to the best of my ability :) ), 'crashes' where the sudden onset of physical and mental fatigue would be so strong that I couldn't make my arms do what I wanted, and worst of all, horrible and persistent brain fog. So I started reading more about CFS and learned about B12 being solution for some people. This rang a bell since, although I've never had a below range value of TOTAL B12, I was given injections of hydroxocobalamin twice in my life (few years ago) and that made me feel amazing (my symptoms weren't as severe than. They got much worse in the last 12 months). So I got three hydroxocobalamin injections (1mg/ml) and started taking sublingual drops of methylB12. Injections made some difference (I only started with drops a week before my last injection) but the real effect came with methylB12. I then tried to lower the dosae of CoQ10, thinking that I might not need as much now. Well, I lasted a week before all the pains came back. So, all I know so far is that I need 600mg/day CoQ10 and 1 - 2 mg/day methylB12. Here is a summary of the symptoms improved by each:

    CoQ10:
    - muscular pain
    - chest tightness
    - morning fatigue
    - headache - I've been having headaches for years, almost every day, and at the end got very bad occipital neuralgia. All gone with CoQ10

    MethylB12:
    - memory
    - 'processing speed' - one of the most annoying aspects of brain fog was when I get into state that I just do not understand what I'm hearing or reading - I mean, I understand words, but I feel like they are just flying around me and I can't catch them. With methylB12 I feel smart again :)
    - dreams - I used to dream either about things that are happening to me in that period, or have long dreams that seemed like whole movies. In any case, I used to remember my dreams, few per night. But in the last 2 years I felt as if someone wrapped my dreams into a very thick fog, I completely lost them, couldn't remember anything. With methylb12, my dreams returned to what they used to be.
    - laugh - I am laughing much more, genuinely finding things funny to the point where I have to laugh (see the next point)
    - anxiety/depression - I spent the last three years being miserable (sometimes fully depressed) about how some aspects of my life turned out. I wasn't sure if it was my then-mysterious illness that's causing depression, or is depression ruining my health.

    I can almost say that with CoQ10+Methylb12 I feel like my old self again.

    Now the interesting bit: when I read about the methylation protocol I wanted to try it. Two days into taking FolaPro, Neurological Health Formula (NHF) and Phosphatidyl Serine Complex the brain fog came back. It came back very abruptly, I just suddenly found it much harder to find words, started mixing words and my short term memory went on strike again. Btw, I also started taking Source Naturals adbB12 but that doesn't seem to do anything (I am now waiting for Anabol brend, to try that one).

    So I have a few questions I am not really expecting definite answers to, but would like to hear ideas:

    - What could be the most likely cause for the return of brain fog? NAC in NHF? Folate?
    - is it possible to be just activeB12 deficient without needing folate (in the form of metafolin)?
    - how the need for high CoQ10 fits into this?
    - Could the effects of CoQ10 and adbB12 be overlapping each other?

    Thanks for reading such a long post :)
     
  2. adreno

    adreno 3% neanderthal

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    I would put my money on phosphatidylserine being the culprit.
     
    LaurieL likes this.
  3. Crux

    Crux Senior Member

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    Hi Aineko;

    It's great you've had this response to CoQ10 and Methyl B12. ( Although the amount of CoQ10 needed must be getting expensive.)

    I looked up the nutrients needed for CoQ10 synthesis, and Dr. Myhill puts it clearly. ( Some of the needed substances are: B12, folate, B5, B3,tyrosine,vitamin C, etc. (So maybe in the future, the CoQ10 amounts can be reduced.)

    I'm not sure why brain fog returned, it could be the PS as adreno wrote. Some people have reported side effects from NAC. If the B12 has been low, relative to the folate, there could be side effects. ( Personally, I need a very high ratio of B12 to folate intake.)

    http://www.prohealth.com/library/showarticle.cfm?libid=16337
     
  4. Aineko

    Aineko

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    oh gosh, and couple days ago I stopped everything else from the methylation protocol except that one! I'm dropping all methylation protocol stuff today and going back to jus VitD, fish oil, CoQ10 and the vit B12 I've been taking.
     
  5. Aineko

    Aineko

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    Thanks for the link! Yes, all this ends up very expensive :).

    The reason I asked this:
    - is it possible to be just activeB12 deficient without needing folate (in the form of metafolin)?
    was because I seemed to get better without any folate intake (apart from the food), so I am wondering if it is possible that I need just CoQ10 and B12 to remain OK, or could the effect of these two diminish in the future if I don't take metafolin (in case some revamped biochemical pathway depletes it). I guess I'll have to wait and see.
     
  6. caledonia

    caledonia

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    Hi Aineko. It's hard to tell without your SNPs. I suggest getting a 23andme gene test. Once you get your results we can tell you how to pull out the methylation SNPs. It's only $99.

    Maybe you don't have MTHFR (the folate gene mutation), or maybe you're getting enough folate through your diet. I know of somebody who has MTHFR, but doesn't need folate supplementation because she eats lots of green leafy vegetables.

    Your response to CoQ10 is really interesting. I haven't heard of it helping with pain before. Usually you hear people say it helps with energy. Ironically, that's why I use for brain fog - 100mg a day worked great for me for many years.

    My need for CoQ10 has lessened with methylation supplementation - so I'm now taking 1/4 of what I used to take.

    High dose pharmaceutical grade fish oil works great for me for pain/headaches.

    If you want to figure out which supplement is causing the brain fog, you would stop all the new supplements, and let all the brain fog clear out. Then restart each one, one at time, waiting several days or a week before adding the next one. Keep notes on your symptoms.
     
    Valentijn likes this.
  7. Star-Anise

    Star-Anise Senior Member

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    Aineko
    Here's my 2-cents worth (p.s. I'm certainly not an expert, so take w grain of salt, lol)
    • the fact that you responded so well to CoQ10 is really telling. Yasko says that deficiencies in Q10 are almost always related to methylation problems, since synthesis of CoQ10 by your body depends on the
      methylation pathway.
    • In particular I would question if your disruption occurs as part of mitochondrial function. As per Dr. Myhill:
    "In a normal healthy person, Co-Q10 can be synthesised, but it requires the amino acid tyrosine, at least eight vitamins and several trace elements. Vitamins include folic acid, vitamin C, B12, B6 and B5. Synthesis of Co-Q10 is inhibited by environmental toxins and chronic disease.I am coming to the view that many of my CFS patients are metabolically dyslexic - that is to say even when all the raw materials are available, they cannot make their own Co-Q10 in sufficient amounts and therefore levels need to be measured and supplemented.... Co-Q10 can be expected to work best in conjunction with magnesium (available in the Mineral Mix), D-ribose, acetyl L-carnitine (also available through eating red meat, especially mutton, lamb, beef and pork - but to get 2 grams you need to eat about a pound of meat a day!) and NAD (levels can be measured, but most people need 500mg of NAD daily)."

    as per Wiki:
    CoQ10 and electron transport chain

    CoQ10 is fat-soluble and is therefore mobile in cellular membranes; it plays a unique role in the electron transport chain (ETC). In the inner mitochondrial membrane, electrons from NADH and succinate pass through the ETC to oxygen, which is reduced to water. The transfer of electrons through ETC results in the pumping of H+ across the membrane creating a proton gradient across the membrane, which is used by ATP synthase (located on the membrane) to generate ATP. CoQ10 functions as an electron carrier from enzyme complex I and enzyme complex II to complex III in this process. This is crucial in the process, since no other molecule can perform this function. Thus, CoQ10 functions in every cell of the body to synthesize energy.

    • Q10 is a potential methyl donor, note chemical name: 2-[(2E,6E,10E,14E,18E,22E,26E,30E,34E)-3,7,11,15,19,23,27,31,35,39-decamethyltetraconta-2,6,10,14,18,22,26,30,34,38-decaenyl]-5, 6-dimethoxy-3-methylcyclohexa-2,5-diene-1,4-dione and you say that you have no difficulties with methyl-B12, so I would hypothesize that the "methyl," part of the equation is not the problem
    • Many people have problems with methylfolate, you can find many stories on this forum. Do you need it? Well it is possible that with the addition of the methyl groups from the B12, and Co-enzyme Q10 that you are able to manufacture the methyl-folate without assistance. I would question why you got so low in Vitamin Q10, the consensus on the quick google search is stress, over-exercising, chronic illness.... I have attached a diagram of synthesis below (sorry for blurriness, source wasn't good). As you can see two of primary precursors are Acetyl-CoA, and Tyrosine (or Phenylalanine).
    • My hunch is that your problem with folate supplementation might be unrelated to your Q10 problems. See link for more information regarding methylation & potassium: http://forums.phoenixrising.me/inde...olate-heavy-metals-general-methylation.17440/
    • I think you feel better with B12 supplementation and Q10 because it is addressing your likely low Q10 issues, it is not necessarily kickstarting your methylation
    • The only way to know for sure if you have issues with making 5 methyl folate which is needed for methylation is to test to see if you have the MTHFR C677T mutation
    • In my mind the use of phosphatidyl serine (PS) is related to the shortcut BHMT shortcut cycle, and as well it works to shunt high cortisol (as part of adrenal fatigue pattern). If you do not have low cortisol and you are taking it, this could make you feel badly, but as well my hunch is that it got the BHMT cycle working a bit, and you likely have similar response to the methylfolate. At first people can have really adverse reactions to moving forward with methylation as it is related to the mobilization of accomulated toxins and metals.
    • I would recommend that you proceed cautiously with both methyfolate and PS. I personally would pick the supplement I respond to the least, and start with small, smaller, and smallest doses possible.
    • However, if you are feeling amazing without PS and methylfolate, then I would not necessarily look for problems. If you are really worried about drained folate supplies as it is a precursor to Q10 production, then I would check my MTHFR status to see if methylfolate production is an issue.
    • I also would look at Tyrosine and Acetyl CoA deficiencies or synthesis disruption. For Tyrosine I would look to possible CBS issues and BH4 production association with COMT mutations, and for Acetyl CoA I would like to possible ACAT, (Acetyl-Coenzyme A acetyltransferase) mutations. More information regarding these can be found in Yasko's book that you can find online:
    www.dramyyasko.com/wp.../files.../1327512160_9_1_1_8_pdf_02_file.pdf

    Star:)

    [​IMG] Co-enzymeQ10synthesis.jpg
     
  8. Aineko

    Aineko

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    it's a bit more for me since I'm in Australia :), but thanks for pointing me to their website, I totally forgot about them and didn't know that the price dropped so much. I'll definitely look into getting the test (probably in two months, since I'm going away), regardless of my illness.

    I doubt that it's coming from the diet ( really not a big leafy green eater).

    I'm coming to a conclusion that it is about high dosages and that some patients miss the benefit simply because all doctors recommend 'standard doses'.
    This is probably the most important study I looked into when I got the diagnosis. Beside the symptom improvements it also shows the revival of mitochondrial biogenesis.

    that's what I'm going to do now - stop all the new ones. and if I decide to experiment again I won't do it in the middle of the exams :).
     
  9. Aineko

    Aineko

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    Thanks for all the info, really appreciated! :)
    One interesting thing, which may or may not say something about my methylation status: the day after I received my third hydroxocobalamin injection and ten days since I started taking methylB12, I checked my homocysteine level. It was at the lower border (6 whatever-the-units). I don't know much about this and it's a shame that I never checked it before (therefore lack any reference), but given all the talk on the net about attempts to lower homocysteine level, I am not sure if this small B12 intervention would do much if it had been elevated in the first place. In other words, I suspect my usual levels might be low as well, which might mean...what? that my (biggest) problem is not in the methylation cycle (maybe some other aspect of cellular energy metabolism???)...
    The only reason I experimented with methylation protocol was to see if I could get to the more 'cured' level, rather than just maintaining good condition with high dose CoQ10 and B12. But I think I might just stick to that for some time and see how it goes. :)
     
  10. Star-Anise

    Star-Anise Senior Member

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    Aineko more food for thought:

    As per Yasko's info: low homocysteine is often related to those that have CBS upregulations:

    We want the homocysteine to be converted into glutathione, but it doesn't happen as it should if there is impairment in the way that CBS enzyme functions.

    As well she provides following information:
    If you were taking large amounts of Q10 @ this time, we know that you may have had excess methyl groups to help prevent buildup of homocysteine. You may experience a bit more support if you experimented with some other methyl donors like SAMe, which is an integral component of several steps of methylation as well... see below:

    I would look into this as possible next steps.

    As I suggested in previous post. This would be important for you to determine your status on this mutation.
    You're on the right path! It doesn't hurt to hold the level for a bit and stick with what you know what works :)
    S.
     
  11. triffid113

    triffid113 Day of the Square Peg

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    Well I tend to relate more to symptoms than labels and several of your symptoms ring a bell. I also tested low in CoQ10 despite taking 100mg ubiquinone/day for the past 25 years. So I decided I must not be able to make ubiquinol out of ubiquinone and switched to that, but I really can't afford to take a higher dose so I also put my ear to the ground/internet and found that it takes thyroid hormone to turn ubiquinone to ubiquinol, and your TSH should be <2.0 (or even closer to 1.0) and mine frequently goes above that (meaning low thyroid). Low thyroid also causes brain fog. (So check your thyroid against these lab values: http://www.lef.org/protocols/appendix/blood_testing_02.htm?source=search&key=TSH reference range)

    Someone above made a list of things that go into making ubiquinol and you should peruse that list also for any dietary / supplement holes in your regime. I also want to comment that we have found here that nutrition is interconnected...when you supplement a handful of things and not others you open up previously closed biochemical pathways and those pathways may require additional nutrients you are ot getting. You cannot piecemeal health. You should be taking a more well rounded supplement regime. (In particular B vitamins activate the methyl cycle which makes methyls which are used to turn ON AND OFF chemical reactions throughout the body. Turn on a chemical reaction w/o the needed nutrients and you just fall from one health condition into another).
     
  12. triffid113

    triffid113 Day of the Square Peg

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    Ok, I want y'all to STOP RIGHT THERE.
    (1) NORMAL homocysteine is 6.3. Ayone with higher is NOT OPTIMAL and it harms your veins and arteries.
    (2) *I* have ALL the CBS upregulations (and one is homozygous) and *I* have HIGH homocysteine w/o supplementation. So DO NOT believe everything you are told - there is nothing more important than TESTING.

    Aineko, If your homocysteine is 6, you are doing good. Your methyl cycle is probably fine UNLESS you do not eat much meat or sulfur products to achive that. In that case it would be just luck that your homocysteine comes out right and you can never really be sure w/o testing SAMe. I have never done that because neither www.lef.org nor directlabs offers a SAMe test. However I can observe what happens to my homocysteine as I supplement or don't via www.lef.org homocysteine test and also I have tested my carnitine level (which requires methyls) and it s normal under my supplementation regime so I presume my methyl cycle is functioning normally. That says nothing about downstream and - say - glutathione levels. Another topic, another investigation.
     
  13. Aineko

    Aineko

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    This is the second day of not taking PS and, since my new package arrived today, I took about 5mg methylB12 since this morning. Finally, for the first time since last Thursday, I feel free of brain fog. Everything just kind of cleared up few hours after taking the 4mg lozenge of methylB12. No more trouble thinking, searching for words ("you know....a thing for the...thing?") or fatigue.

    I think I might leave any other experimentation aside until I either do 23andme test or, in fact, until I feel that what I'm doing now is not working any more.

    The only thing I am still taking from the new supplements is Source Naturals adbB12 (which I started taking when I started with the other stuff from the methylation protocol) but that doesn't seem to be having any effect whatsoever. I am still waiting for the Anabol brand to arrive.

    triffid113 - yes, I do eat a lot of meat (I actually grew up in Serbia, where meat is literally breakfast/lunch/dinner :) ). I will test my homocysteine level again in July. Also, I tried ubiquinol but as you said, it is very expensive to take in higher doses, so I'm sticking with ubiquinone, since it's working (it costs me about AU$30 per month, if they keep the discount :D - and I do not react the same to all brands, but have found one that makes me pain free with 600mg/day).
     
  14. Sea

    Sea Senior Member

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    I had the 23andme test earlier this year and from memory postage was $74. I think it is very worthwhile to do. One thing to keep in mind since you are going away is that they are taking 6 - 8 weeks to give results as so many people have taken the test since they dropped their price. It was only about a week from when I ordered to when the kit arrived, though that may take a little longer now too.
     
  15. triffid113

    triffid113 Day of the Square Peg

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    You can test your ubiquinol levels via the www.lef.org CoQ10 test or a more extensive test by Metametrix (their basic profile.. you'll see the CoQ10 test is a big hunk of the cost so you may want to spring for the whole panel).

    Trif

    fyi, I would never just take a handful of pick and choose supplements - especiallys B's. They work together. You are just setting yourself up for down the road (and not too far) deficiencies if yu take only 1 B. Try a good B coplex like Thorne Basic B which has all the right forms of B's. And don't forget this regime increases need for potassium. LAstly don't forget to check your thyroid. It is not wise to work aroud a symptom of a basic problem w/o determining if you have that problem and fixing it. Because that problem has other symptoms as well...
     
  16. Aineko

    Aineko

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    I got the Anabol adB12 brand three days ago and I definitely respond to it, unlike with the Source Naturals brand.
    it seems as if it allows me to exhaust my muscles without completely exhausting myself and being sick for the next day. this is a second time in three days that I was able to do a very long and hard training (which I haven't been able to do in months) and, which is amazing, I do not seem to crash after that. In fact, despite little tiredness, the rest of my day feels like a normal day - I have enough energy to go around, even to catch a train to the city and do some shopping (which is usually enough in itself to bring me down). I again have (positively :D) sore muscles the day after training - for so long I wasn't even able to train to the point that would exhaust certain muscles since I would be totally exhausted way before that.
     
  17. Aineko

    Aineko

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    Looks like I just can't tolerate methylfolate or something else in the B complex. I got Thorne Basic B but after one tablet had a mini episode (few hours) of brain fog (started with spaciness), tiredness and even some neck and shoulder muscle ache. As if undoing the effects of the other supplements I'm taking.
     
  18. Aineko

    Aineko

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    Whenever i take adb12 i end up with few mornings of painfully dry throat... i wonder if taking adb12 depletes folate? No similar problems with methylb12.
     

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