International ME/CFS and FM Awareness Day Is On May 12, 2018
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Adenosyl and methylcobalamin injection dosage

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Johannes, Oct 13, 2018.

  1. Johannes

    Johannes

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    I have injected methylcobalamin 5 milligrams once a week. I haven't tried adenosylcobalamin injections yet but I will try them soon. I am just not sure what the dosage should be. What dosage do you use when you inject adenosylcobalamin? What are the effects?

    There was a swedish study according to which CFS patients have high level of homocysteine in their cerebral fluid. That would indicate B12-deficiency in the fluid. According to one doctor in Sweden, 10 milligrams once every 4 to 6 weeks would be enough to lower high homocysteine levels in cerebral fluid and my quess is, also in the brain. I think this because one small pilot study showed increased homocysteine levels in the brains of reacently deceased CFS patiens.

    One 5mg methylcobalamin shot a week seems to help my cognitive symptoms such as ability to concentrate and remember but it doesn't seem to give me more energy. Not atleast yet, after injecting for two weeks. I will try later 5mg in two weeks. Does any of you get more energy from methylcobalamin? What symptoms go away with methylcobalamin injections?
     
  2. Wonkmonk

    Wonkmonk Senior Member

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    The dosage should be the same. Cobalamin is a very large molecule, so whatever variant it is (adenosyl-, hydroxo-, methyl-, cyano-cobalamin) shouldn't matter much in terms of how much B12 you get. With respect to bioavailability, cyanocobalamin is inferior, but all others are about the same.

    Please check with a doctor first, though.
     
  3. Johannes

    Johannes

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    Is this your own experience or from a study? I don't doubt you. Just thinking that if about 20 precent of cobalamin in the body is adenocyl and about 80% is methylcobalamin, why not inject 20% adenosylcobalamin and 80% methylcobalamin?

    How about the injection freguency? Methylcobalamine is sold here 1mg and 5mg ampoulles. If I now need methylcobalamin 5mg once in two weeks and adenocylcobalamin is sold here 1mg and 10mg ampoulles, then I would need to inject 10mg adenocylcobalamine once a month.

    Asking my doctor is like asking my mother, who is a nurse of different field. My doctor doesn't know enough about B12 injections. In Finland CFS is not really understood by the doctors. Also, active cobalamin injections are not sold in Finland, so I have to buy them elsewhere from Europe. My doctor seems to listen to me as long as I have hard solid evidence for my claims about B12. Also, doctors would loose their license if they would prescribe methylcobalamin or adenosylcobalamin injections for CFS. :(
     
  4. Wonkmonk

    Wonkmonk Senior Member

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    It is not directly from a study, but it is solid knowledge. See here in the German Wikipedia page on the right side:

    https://de.wikipedia.org/wiki/Cobalamine

    You can see the Cobalt-atom at the very center ("Co+"). Above that is an R.

    Do get Cyanocobalamin, the R gets replaced by –C≡N
    For Hydroxycobalamin by –OH
    For Methylcobalamin by –CH3
    And for Adenosylcobalamin by 5′-Desoxyadenosyl

    5′-Desoxyadenosyl is the largest of these, but it is still rather small compared to the rest of the Cobalamin molecule.

    Methylcobalamin, Hydroxycobalamin and Cyanocobalamin can be converted into adenosylcobalamin, so you don't need the 80/20 split. The body produces adenosylcobalamin as it needs.

    Regarding frequency, I can't comment, because you seem to need very high doses - probably because of the CFS.

    Normal people would get rather high levels of B12 with just one 1000-2000µg injection every three months, but that's probably not enough for you.
     
  5. Johannes

    Johannes

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    If you mean normal people by those whose B12 doesn't absorb from the bowel for a reason or another, yes. In Finland, they are injected every three months 1mg hydroxycobalamin to once every week 1mg hydroxycobalamin (or cyanocbl). But not all people can convert one form of cbl to another. Why? Because they are sick that way. When you are sick, biochemical "laws" doesn't always apply.

    It seems that there are four kinds of people with different kinds of dosages: one: vegans and some vegetarians, one for those whose vitamin B12 doesn't absorb from stomach to bowel to their veins due to various reasons, one for those who have various gene mutations and atleast one for people with dementia, fibromyalgia and certain type of dementia.

    Then some people need methylcobalamin and some adenosylcobalamin because gene mutation can affect so that cells can not change B12 to active form (methylcobalamin) and/or so that methylcobalamin doesn't change to adenosylcobalamin and/or one so that adenosylcobalamin doesn't change from adenosylcobalamin back to methylcobalamin. These patients all may need different dosage of metcbl and/or adecbl. And since we are all individuals, our dosage may differ because of that.

    I don't have gene mutations concerning folate and only a not so important gene mutation in MTRR gene and COMPT, which could affect to methylation but according to plenty of tests do not, that much. And my methylcobalamin changes to adenocyl very well. But I do have CFS.

    Those with CFS, according to couple of studies have high homocysteine level in either brain or cerebral fluid which means low vitamin B12 level in those areas. And some people with COMPT gene mutation are having higher homocysteine levels in the brain. Which am I? That I don't know. Or maybe I have them both affecting my B12 level in the brain.

    A swedish doctor have studied that if a patient only have CFS without gene mutations and therefore higher homocysteine level in the brain, homocysteine level in the brain normalises with 10mg methylcobalamine once every four to six weeks (source: personal email from the doctor). This I have noticed in my own brain too, so far.

    According to swedish doctors, some CFS patients benefit from about 3mg of methylcobalamin injected every two to six days. This would improve their symptoms including fatigue. But these people might have gene mutations, which is not sure yet. I tried this but didn't find any relief for my symptoms other than cognitive symptoms.

    What I haven't found is that how much metcbl and adecbl do people with gene mutations need and how much adecbl do people with CFS only need.

    Kind Regards.
     
  6. Wonkmonk

    Wonkmonk Senior Member

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    This is very intersting and it goes way beyond my knowledge, so I cannot comment on the soundness of these theories. But I am wondering: Could testing Holotranscobalamin help in any way? Not sure if it might.

    And am I getting it correctly, that you think some problem with B12 metabolism - genetic or otherwise - is the (sole?) reason for your CFS?

    That's an interesting proposition, and it might have merit, because you seem to improve on very high doses of methylcobalamin. Then why not simply continue those?

    Back to your initial question, I still feel very confident that you should use about the same dose regardless which form of cobalamin you are injecting (perhaps a higher dose for cyanocobalamin).
     
  7. Johannes

    Johannes

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    I don't think that a problem with B12 metabolism could be a reason for CFS. Quite a contrary. Problem with B12 metabolism can be a caused by CFS.

    I wouldn't use cyanocobalamin as it is not a natural form of B12 and may diminish glutatione, which seem to be a important guy in CFS. Well, that's a theory but well though theory by the scientist anyway. On the other hand, one small pilot study showed that one can not decrease brain homocysteine with syanocobalamin but only with methylcobalamin. My B12 deficiency seems to be in the brain only as is with so many other with CFS patient.

    I had holotranscobalamin tested. It was in he middle range of reference level. Doctor said, that it could be a little better but is still OK. That was before I started injecting methylcobalamin. Now it is, ofcourse sky high.
     
  8. Wonkmonk

    Wonkmonk Senior Member

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    Same. I tested Holo-TC after injecting 3000µg weekly for 4 weeks and it was above the range that the lab is even counting (">60", don't remember the unit).
     
  9. Johannes

    Johannes

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    Here some observations concerning methyl and adenosylcobalamin injections.

    Methylcobalamin:
    Helps with ability to concentrate and maybe improves a little my memory. Doesn't help with my muscles and doesn't give energy to my brain. Doesn't help with headache or other MCAS of CFS symptoms, not atleast after four injections. 5mg shot once in seven days. It seems that in my case I can inject maybe once in two weeks, since there are no symptoms coming back with during those seven days.

    Adenosylcobalamin:
    Helps even more with ability to concentrate and learn and also helps with remembering things. My brain fog is totally gone after the first injection. It is wonderfull to see the world like a normal healthy person sees it after almost eight years with brain fog. I have gene mutation called COMT 472A which may hinder my dopamine, epinefrin and noradrenalin production causing also higher levels of homocysteine in brains. Adenosylcobalamine injection has also affected to my dopamine production since I now have felt happyness, which I haven't felt for a long long time. I have now only injected once 1mg and that was three days ago. I can ztill feel happyness and no brain fog yet. This cobalamin didn't help with other symptoms, atleast not yet.
     
  10. Wonkmonk

    Wonkmonk Senior Member

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    Amazing. And as B12 doesn't have any known adverse effects, even in regular high doses, you can possibly do this regularly.

    But as you say this can't be the whole story since there are other symptoms that remain, so B12 probably isn't the whole story.
     
  11. Johannes

    Johannes

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    You are right @Wonkmonk , it isn't. Another injection that has helped me tremendously, is vitamin D3. For some people with CFS it can help. In my case, injecting 2500 micrograms D3 once in two months has given me lots of energy. Now the dosage will be increased to 2500 micrograms per month. If you are interested, please google Anne dorothea hoeck + vitamin d. I will enclose one of her articles about vitamin d. She is a doctor who studies vitamin d and she has treated many many CFS patients. But still I am not well. I don't have enough energy even though the situation has improved a lot. I am not bed ridden anymore.

    Attachment E Annedore Hoeck, Vitamin D - iacfs/me
    PDFhttps://iacfsme.org › PDFS › Attachment-...
     
  12. Wonkmonk

    Wonkmonk Senior Member

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    I have seen lots of reports that people get better on high-dose vitamin D, but paradoxically I am getting terribly worse even on 1000 IE a day. I have to keep vitamin D in the 20-30 ng/ml range. If I go above that, I get much worse. Same happens with calcium supplements or high-calcium foods. I have to limit intake to 800-1000mg per day.

    I suspect that this is because herpes simplex virus uses the Akt pathway to increase intracellular calcium concentration for cell entry and replication, so if it has more calcium available, it can spread more easily.

    I am planning to experiment with miltefosine, which is a Akt inhibitor and has also shown anti-herpes activity in vitro.

    Sad thing is, one can't go very low with either calcium or vitamin D because if one does so, parathyroid hormone gets upregulated and mobilizes calcium from the bones to keep serum calcium in a certain range. So it is not possible to go much lower than with an average intake.
     
  13. Johannes

    Johannes

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    @Wonkmonk have you had your active vitamin D measured? There is a disease that some have, which may cause problems with big vitamin D intake. If I have understod correctly, this disease affects to active vitamin D levels.
     
  14. Wonkmonk

    Wonkmonk Senior Member

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    Yes, I did, it was normal.

    The problem also occurred with calcium supplements when I took no or very low vitamin D. It must be about the calcium.
     
  15. Hip

    Hip Senior Member

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    @Johannes:

    I was just recently communicating with Dr Greg Russell-Jones in Australia. He has a PhD in biochemistry, and has as in-depth knowledge of B12.

    Greg stressed the importance of taking vitamin B2 20 mg daily with vitamin B12. And in addition, taking daily molybdenum 100 to 300 mcg, iodine 150 to 300 mcg and selenium 55 to 200 mcg.

    The selenium he says should be in the form of sodium selenite (Twinlab have a sodium selenite supplement); he says the selenomethionine form of selenium is not very effective. SelenITE is not to be confused with selenATE.

    These minerals are needed to convert vitamin B2 into its two active forms, FMN (flavin mononucleotide) and FAD (flavin adenine dinucleotide). Without these minerals, he said you can get a functional deficiency of B2, where although your B2 levels are normal, not enough B2 is transformed into the active FMN and FAD forms.

    Greg said without FMN and FAD, you cannot convert from one type of B12 to another, and you cannot cycle B12.

    He thinks people do not recover from ME/CFS because of a lack of B12 and a functional B2 deficiency. He told me he knows many who have got rid of their ME/CFS that they had for over 10 years using his protocol.


    Greg developed some vitamin B12 oil products which use a penetration enhancer he devised so that the B12 can be absorbed through the skin (his B12 oil comes in a spray bottle, designed to be applied to the skin). I believe the penetration enhancer technology he employs is microemulsions (similar to nanoemulsions), as he has a paper on these.

    Each daily dose of oil from the spray bottle contains 2000 mcg (2 mg) of B12, and I read an estimated 80% is absorbed through the skin by means of his penetration enhancers. One bottle contains around 60 x 2000 mcg doses, and costs US$50.

    He recommended his adenosylcobalamin and methylcobalamin oil for ME/CFS, which contains both of the active forms of B12. (I always thought hydroxocobalamin was also an active form of B12, but apparently it is not).
     
    Last edited: Oct 27, 2018
    Helen, Marley101 and Wonkmonk like this.
  16. Johannes

    Johannes

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    @Hip I have written to Russel-Jones as well. And he had the same message to me as well. Since I am unable to use oral supplements, because they cause me severe inflammation to my bowel and same happends with any transdermal supplement or drug, he couldn't help me. Hence, the cobalamin injections.

    But there is another guy with CFS, who has red a lot about B vitamins and their production in human gut. He has got in remission with his CFS twice by altering his microbiome. As we know, all the B vitamins are manufactured in our bowel by the bacteria. Humans get their B vitamins not only from the food but from the gut bacteria too. When the microbiome is not working right, we don't get enough B vitamins from the bacteria. So one can improve one's vitamin B levels by correcting the microbiome in the bowel. One specific finding is that people with chronic vitamin D deficiency have problems with vitamin B production. Vitamin B producing gut bacteria will die if human body has a vitamin D depletion that lasts long. According to this study, vitamin B producing bacteria will florish after correcting the vitamin D level and after using multi B vitamins for some weeks.

    So, if one lacks vitamin B2 like I do (and also vit B6) and have a vitamin D deficiency like I do, it may be possible to correct the B12 deficiency simply by having a correct dosage of vitamin D and multi B vitamins. BUT since studies show that CFS patients also have high homocysteine in their brain and cerebral cortex fluid, it also means that they still lack methyl cobalamin for other unknown reason, since not all the CFS patients have vitamin D deficiency.

    Thanks for your help and ideas! Unfortenately I have so nasty chemical intolerance that I can't put any suplements into my mouth or to my skin except eat calsiumcarbonate and wheat germ oil. However, rising vitamin D level with injections seem to help to many of my symptoms. One doctor thinks that when the dosage is high enough, my bowel will be less intolerant to supplements and then I could try multivitamin B, molybdene and other.
     
    Hip likes this.
  17. Hip

    Hip Senior Member

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    Have you considered whether that chemical intolerance might be mast cell activation syndrome (MCAS)? MCAS is treatable to some extent with certain antihistamines and mast cell stabilizers.
     
  18. Johannes

    Johannes

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    I seem to have many symptoms that would fit to MCAS. I've tried most commonly available drugs for MCAS but they have caused my mucosal membrane to irritate and bowel to inflammate. Russel-Jones thought this could heal itself with B12 but it didn't, atleast with methylcobalamin. Injected vitamin D3 helps a little.
     
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  19. Wonkmonk

    Wonkmonk Senior Member

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    It wouldn't fit exactly with what you are describing here, but it might also be worth testing autoantibodies against intrinsic factor (if you haven't done so already). Perhaps this could be a reason for your inability to tolerate oral B12 (but couldn't explain the problems with transdermal B12, so it probably isn't the problem, but who knows).
     
  20. Johannes

    Johannes

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    I had vit B12 and active B12 measured and they were OK before I started injecting methylcobalamin. So wouldn't this mean that intrinsic facor would work just fine? Or what do these autoantibodies tell you?
     

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