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Relationship between B12 and Folates

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by R++, Apr 16, 2010.

  1. R++

    R++ Guest

    Can someone help me understand this? How do these two work together and need each other? What does each do for the methylation cycle??? I still can't put all the pieces together.

    Thank you!!
  2. R**

    R** Senior Member

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    If you don’t want to go through your doctor and pharmacist, Perque carries the hydroxycobalamin. (www.PERQUE.com or phone 800-525-7372) Here is something from their site about the benefits of the hydroxycobalamin.

    "The connection between vitaminB-12 and folic acid is also critical. VitaminB-12 reactivates folic acid. If an individual has low levels of vitamin B-12, severe folic acid deficiency may develop. Similarly, a B-12-deficient individual taking only folic acid can make the B-12 deficiency worse. PERQUE delivers vitamin B-12 in its superior, activated hydroxocobalamin form. Although it is more expensive and difficult to obtain, hydroxocobalamin lasts longer and raises B-12 blood concentrations higher than other forms. For this reason, it is the only form PERQUE uses. Hydroxocobalamin requires no intrinsic factor and is taken up directly by mucous membranes regardless of digestive competence.* Hydroxocobalamin is easily converted to active but short-lived methylcobalamin and adenosylcobalamin as needed in the body. Hydroxocobalamin, the parent to other B-12 forms, provides better, long-lived B-12 action in the body."

    http://www.123people.com/ext/frm?ti...t-vitamin-b12.aspx&section=weblink&wrt_id=217

    anyone have other info?
  3. richvank

    richvank Senior Member

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    Hi, R++.

    The partial block in the methylation cycle in CFS occurs at the enzyme methionine synthase. This enzyme reacts 5-methyl tetrahydrofolate with homocysteine, to produce tetrahydrofolate and methionine. In other words, the methyl group on 5-methyl THF is transferred to homocysteine to make methionine. This enzyme requires methylcobalamin, a form of vitamin B12, as a coenzyme. The methyl group from 5-methyl THF is first transferred to cobalamin to form methylcobalamin, and then it is transferred to homocysteine.

    In order to lift this partial block of methionine synthase, we've found that it's necessary to supply both a form of B12 and a form of folate together. In the Simplified Treatment Approach, the form of B12 is hydroxocobalamin, using the sublingual Perque supplement discussed by R**. Two main forms of folate are used: folinic acid and 5-methyl THF. Other treatments of this type use other forms of these nutrients.

    Best regards,

    Rich
  4. jeffrez

    jeffrez Senior Member

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    Hi Rich - what's the difference metabolically, or in activity, between the 5-MTHF and folinic acid? In other words, why not just take folinic acid, for example? That is "active" folate, right? Why the emphasis on the THF?

    Also, can you discuss the preference in your protocol for hydroxycobalamin over methylcobalamin? I'm sure that must be detailed in your papers somewhere, but I can't find where (I think) I read such an explanation.
  5. doveman

    doveman

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    What about if I'm taking methylcobalamin. Does that mean there's no need to take methylfolate as the methylcobalamin already has the methyl group attached?
  6. richvank

    richvank Senior Member

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    Hi, Mr. Kite.

    I actually prefer including both folinic acid and 5-MTHF. 5-MTHF is the form needed by methionine synthase, which is the enzyme with the partial block. Many people's cells are able to convert folinic acid to 5-MTHF well, but many others have inherited genetic polymorphisms that slow this conversion down considerably. The polymorphisms in the MTHFR enzyme are a good example, and these are very prevalent in the population.
    Folinic acid is helpful for a couple of reasons. One is that it is very versatile, in that it can be converted to other forms of folate, which are needed to make DNA, RNA, and purines in general. Another factor is that folinic acid is polyglutamated when it is inside the cells, and this can help to lower the amount of free glutamate, which is an excitotoxin. Excitotoxicity is a problem in CFS, and it is often exacerbated when methylation cycle treatment is entered upon.

    I prefer hydroxocobalamin for several reasons. One is that it allows the cells to control the amounts of the coenzyme forms of B12 (methylcobalamin and adenosylcobalamin) that they make, so that they can be matched to the need. Taking methylcobalamin in large dosages by injection or sublingually can overdrive the methylation cycle, as evidenced by a major rise in sarcosine, which I've seen in amino acids testing on some people who have been on this treatment for a while. I am not comfortable with overdriving the methylation cycle, both because I think it slows flow down the transsulfuration pathway and thus limits the normalization of the balance of the sulfur metabolism, including cysteine, glutathione, taurine and sulfate, and also because I am concerned about the possibility of overmethylation of DNA, which could have other deleterious effects.

    My other concern is that methylcobalamin is known to be chemically able to methylate inorganic mercury. Many PWCs have significant body burdens of inorganic mercury as a result of having amalgam fillings in their teeth during an extended period while glutathione has been low, so that they have not been able to detox mercury at normal rates. Methylmercury can cross the blood-brain barrier readily. Mercury is a potent neurotoxin if it gets into the brain. This problem has been observed in guinea pigs. I don't have solid evidence for it in humans, but have heard from perhaps three people who may have had this problem, based on what they have reported. So I prefer to be cautious.

    This having been said, some people have had good experience with methylcobalamin. It can be especially helpful if a person has a shortage of methyl groups, though that can also be helped by taking some additional trimethylglycine (some of which is in the multi that is part of the simplified treatment). or some SAMe. It's used a lot subcutaneously by the DAN! doctors in autism treatment, and as you probably know, freddd on this forum advocates its use as well. In his case, because of a mutation in the intracellular B12 processing enzymes, his body is not able to utilized hydroxocobalamin readily. But I believe that this is a rare situation, based on the published literature. freddd does not agree that it is rare, based on his experience.

    Best regards,

    Rich
    Lotus97 likes this.
  7. richvank

    richvank Senior Member

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    Hi, doveman.

    It seems to be necessary to take a form of folate as well as a form of B12 in order to get the coupled methylation cycle and folate cycle operating normally again. I think the reason for that is the so-called "methyl trap" mechanism, which has caused folate metabolites to exit the cells to the blood. In order to reestablish the folate metabolism inside the cells, they need to be replenished with folate. Which form of folate a person needs probably depends on their particular genetic polymorphisms. Methylfolate will work regardless of the particular polymorphisms, because it is the form needed by methionine synthase. I think it's a good idea to use folinic acid in addition, as I just explained in my response to Mr. Kite. Some people can use folinic acid alone, because they can convert some of it to methylfolate readily, but others cannot. The folinic approach is used by the DAN! doctors for autism.

    Lately, some people with CFS have been trying the protocol recommended by Dr. Alan R. Vinitsky, primarily for autism. This one incorporates hydroxocobalamin together with large dosages of folic acid in a 5 to 2 ratio (folic acid being the 5) and they are taken sublingually. Apparently this works for quite a few people. I think there are some who can't use folic acid very well, though, and that may be why such high dosages are necessary. Folic acid has to be chemically reduced by the DHFR enzyme before the body can use it to make the various folate forms that it uses, and this reaction can be quite slow in some people.

    I certainly don't claim to have found the optimum type of treatment for the methylation cycle block, and I think it varies among people, because of genetic variation. However, I am pretty convinced that fixing the partial methylation cycle block is a cornerstone in the effective treatment of both CFS and autism. Actually, I think they are the same disorder, differing by the age of onset.

    Best regards,

    Rich
  8. Freddd

    Freddd Senior Member

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    Hi Rich,

    I have no idea if it is rare. The problems is thyat it is rarely recognoized in those who survive to adulthood becasue who ever gets tested? It might be that there are variations of severity. I puttered along with problems for decadrsw as long as I ate meat. It was only when I became dependent on Cycbl that the problems became severe. The basic problem is that hycbl is drastically inferior to mb12 and adb12 in combination. Between them they deal with approximately 300 symptoms off the expanded international list whereas Hycbl only delas with abouyt 100 or fewer of those and cycbl even fewer. Since this occurs in the vast majority of those who actually try it it can't be due to my presumed genetic condition rare or not. If you define b12 deficiency as thise things that respond to Hycbl then you leave 2/3 of the people or so twisting slowly in the wind with mysterious ailments for which there is no cure. If doctors were aware of such then there could be graded steps in treatment instead of the creation of medical mysteries. Since a belief in the adequacy of Hycbl creates millions of person-years of misery and incurable mysterious disease it seems to be a rather dangerous to the patient belief. If you are concerned about large doses of mb12 then use small controled doses rather than a mostly ineffective inactive until assumed converted vitimer of b12. I have said over and over that quite modest doses, of 1-5mg sublingual, which is in the neighberhood of 150-1000mcg of mb12 in serum at BEST are probably quite adequate for 95% of healing for most people. I titrated by effect to the doses I am on over a 7 year period as lesser doses were unable to stop, much less reverse, the continued deterioration of my neurology once it started and had been underway for 15 years due to the inability of approximately 100 doctors to recognize that Hycbl and/or Cycbl were not the only b12 possiblities. With Cycbl or Hycbl or 1mg doses of mb12 I would be in a wheel chair wearing diapers and quite possibly unable to read and quite possibly unable to type this. This belief by researchers and doctors in these two inactive vitamers as the only choices nearly killed me and destroyed my life.


    You are all too quick to ignore everything else I say and point to a presumed genetic factor. This presumed genetic factor makes very little difference in practice to my response to mb12 and adb12. Many many more people who have presumably "normal" genetics which includes the very common - 50% - with some defect in folate processing, have very similar reponses to the immediately active b12s. I have seen many hundreds of people have prompt and reasonably complete reponses to the two active b12s after either of the inactive vitimers of Cycbl and Hycbl had already failed to give satisfactory response. These two fail fully in 1/3 of people and fail to deal with 2/3 of the symptoms in most of the rest. Even if they work a little they work poorly. If the software I wrote worked that poorly it wouldn't be usable.

    When the active b12s fail to work well for people with a multitude of b12 deficiency symptoms there is virtually always a reason that can be corrected, usually a deficient cofactor such as Metafolin, SAM-e or l-carnitine fumarate and a few other things. And some are inexplicable at the current state of knowledge. There are no guarantees. I would love a head to head matched pair with crossover study. The differences would be incredibly obvious.

    FMS/CFS are clearly stealth deficiency diseases created by the use of Cycbl, Hycbl and folic acid. They are stealth because of very faulty definitions of "b12 deficiency" based on the inactive vitimers of Hycbl and Cycbl and their symptoms though responsive to the active b12s and most likely prevented by the active b12s if taken all along become untreatable because of faulty definitions. You mentioned "ruling out b12 deficiency". Please be so kind as to tell how that is done accurately as the usual ways of doing so are wrong more often than correct. As an example b12 deficiency was ruled out over and over by every practitioner I went to for 30 years as the cause of my problems, and that was 100% wrong as I have demonstrated. When that many doctors are all 100% wrong there has to be an institutional reason for that.
  9. jeffrez

    jeffrez Senior Member

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    Rich - thanks for the detailed answer. I didn't get notification for some reason, so today is the first time I realized you had responded. I have folinic acid here, so I guess I will just get some 5-MTHF and experiment with it. I know I have low serum folate - aside from external factors like not enough in the diet, etc. what do you think might tend to account for low folate? Either I am burning up too much, or that's an end product that's not being manufactured somehow, etc. ?
  10. b12

    b12 Guest

    b12-folate. the RIGHT combination.

    dear rich vank and fredd and others,
    regards and greetings.
    rich - it is great to find you here! please reply. I hope fredd with give his input also.
    many thanks for your kind help in getting my life back.
    regards
    b12
    (suffering for 18 years)

    PS: IN CASE MR. RICH VANK OR FREDD DO ONLINE CONSULTING. PLEASE CONSIDER MY CASE SERIOUSLY. I AM PREPARED TO PAY YOUR FEES VIA PAYPAL. I understand that you may be a non-medical person and I am prepared to sign any document stating that you will not be legally held responsible for my condition in any case
    (caps only to emphasize. shouting not intended. )
    =================

    THIS QUERY WAS ALSO POSTED AT WRONG DIAGNOSIS. THIS IS THE FINAL VERSION OF THE QUERY WITH ADDITIONAL NOTES. FREDD AND OTHER MAY REPLY HERE AND IGNORE EARLIER WRONG DIAGNOSIS VERSION.

    ============

    I am a newbie here but, I have read and reviewed many of yours posts and materials on b12 and folates + researched the net for verrry long time.


    my symptoms:
    (I am a vegetarian. very little milk or cheese). male. below 40. very weak.
    = ocd (main problem)
    = slight ADHD
    = no depression
    = CFS
    = DSPS (delayed sleep phase disorder). I could only sleep after 3AM for years.
    = tinnitus (more on left ear)
    = leg cramps (more right side)
    = neurofibromas (more on right part of body)
    = symptoms and test results show low calcium
    = very sweet smell in urine, sweat, feces, saliva etc for years. no diagnosis for years. I do not have diabetes. this was probably due to calciuria and/or phosphaturia (due to impaired genetic level calcium absorption). homeopathy has helped me fix this (to a large extent) and enhance blood calcium levels.
    = slight albumin in urine.
    = hair fall
    = very weak /absent erections. almost no libido.
    = very high chemical sensitivity
    =====================
    diagnosis based on symptoms:
    = genetic level calcium absorption problem.
    = OCD (low serotonin) [genetic origin. OCD is there n family]
    = low cerebral calcium.
    = low cerebral folate
    = (slightly) under-methylated
    = low supply of calcium, b12 and folate from diet.
    =====================
    treatment:
    apart from classical homeopathy to correct genetic issues:
    b12 and folate and calcium supplement.

    my questions:

    1. I had problems of calcium depletion and/or lowered b12 with calcium gluconate and vitamin C (both taken together). any idea why? I take calcium carbonate and that is ok. I also had problems with magnesium and vitamin D (burning, heat and heaviness in head). why?

    2. my experiences:
    = cyanob12 never worked in past. I understand this now.
    = common b-complex gave me hyper-excitement. this was due to low calcium levels in brain - as I understand now. it also made me under-methylated (due to cyano b12 and folic acid - as I understand now)
    = methb12 in 500 mcg single dose makes me hyperexcited and overmethylated...and also calcium depleted. why? I don't know this.
    = adenob12 - feel more hot. more diarrhea. why?
    = folic acid makes me undermethylated. I can understand that now.

    = I understand that I an under-methylated by flat taste in mouth. NO desire to take water. if water is taken - head feels watery. is it right symptom of undermethylation? these things gave me undermethylation:
    = only folic acid
    = cyanob12 + folic acid.
    please analyse.

    now the right combination of b12 and folates is proving difficult. please help.

    madanthony made some great posts at wrong diagnosis. allow me to quote.

    "It is an opinion by some, such as Fredd, that therefore MB12 and AB12 are the best form of B12 supplement. No one can know what is the best form FOR YOU unless you undergo genetic testing, such as available at http://www.heartfixer.com/AMRI-Outco...yl Cycle.htm. Some people have genetic mutations that make them sensitive to extra methyls (even if they are undermethylators). For instance there is a COMT allelle which makes it harder to break down dopamine so that even an undermethylator who isn't making much serotonin and dopamine has plenty of dopamine and is therefore sensitive to methyls. Dr. Yasko and heartfixers do encounter this regularly in their practices and they find a basis for the use of hydroxyB12 in certain individuals. The majority of people do not have these mutations."


    "I am sure there IS no good way to deal with genetic mutations which require more methyls in some places and fewer in others as there is no way I know of at present to direct the methyls. (Well you can avoid dopamine precursors like cheese if you can't break down dopamine well, but it's not like taking a pill). Dr. Yasko and company attempt to provide careful methyl balance in such cases but the results can never be perfect. So for instance they might prescribe l-METHYLfolate and hydroxyB12 (1 methyl instead of 2 and - YES the other methyl has to come from the metabolism somewhere). They say the people with these mutations are prone to bipolar and very sensitive to methyl intake. I have a bipolar cousin and I have hormone levels that suggest COMT and C677T mutations, so I don't imagine I will get the kind of do-this-and-you're-golden results I am hoping for. But knowledge is power. Um, also, I regard it as a bit of an adventure. Woo-hoo - not so cheap thrills."


    and fredd said:

    "Hycbl has a reputation as being preferentially converted to adb12 as opposed to mb12"
    [ I would like to add that hycbl is connected with calcium absorption]

    now, keeping my symptoms in mind and my experiences - please suggest what should I do?


    I thought a lot and feel that I do need b12 and folates and my diet does not have them + clear symptoms are there. but, I am not responding well to methb12 and adenob12 and folic acid. also, I am (slightly) on the under-methylated side. but, ALL b12 and folates and b-complex gave some strength to my brain. I also feel that my absorption is OK and injections are not needed. I am hypersensitive to everything and so I need to keep things to bare minimum. after analysing ALL issues: I have decided:

    calcium carbonate + hydroxyb12 + methylfolate + rest all from diet. [nothing else]


    kindly comment on the hydroxyb12 + methyfolate combo for my particular case. I seem to be sensitive to methyl in b12. so, I hope hydroxyb12 will work for me. but, I hope hydroxyb12 will not deplete calcium like methylb12.
    [later on - I was surprised to note that unlike fredd who only emphasizes on methylb12 - dr vinitsky and rich - talk about hydroxyb12]


    3. or should I think about adenob12 again with methylfolate?

    which combination will be easier on stomach - adeno b12 + methyfolate OR hydrob12 + methylfolate. no diarrhea is wanted by me. I feel hydroxyb12 will be easier on stomach. what is your opinion?


    4. rich talks about folinic acid (but, prefers metafolin). I cannot understand this. if hydroxyb12 is used along with folinic acid in any case - the results should be similar to using hydroxyb12 with folic acid - i.e. - UNDERMETHYLATION. I am an ocd case - slightly undermethylated. so, should I take hydroxyb12 with folinic acid or with methylfolate (metafolin).? won't metafolin balance the methylation for me (as I am not taking methylb12)? won't folinic acid or folic acid make me undermethylated? I did experience undermethylation with cyanob12 + folic acid. please choose the right folate for me along with b12.
    [later on it was great to find that vinitsky, yasko and rich talk about b12 and folate combo]

    dr vinitsky feels that the body should naturally methylate and so he goes for hydoxyb12 and folic acid. no forced methylation. will this approach work for me? I doubt. I feel I do need at least one methylator - at least on the folate side.

    please note my weak condition and diarrhea and delayed sleep rhythm and weak brain and SLIGHTLY undermethylated case to choose folinic acid vs. metafolin.


    5. which one is lighter on stomach? folinic acid or methylfolate? does addition of methyl make ithe folate more diarrhea prone than plain folic acid?

    PS: any reports/user experience about methylfolate effect on stomach at 400 mcg dose? any diarrhea? is it better or worse on stomach than A) folic acid and B) calcium levo-folinate (folinic acid)

    6. I feel that RDA of hydrob12 is like cyanob12. so, should I just take 5 mcg or 10 mcg per day of hydroxycbl?
    folate - 200 mcg or 400 mcg per day? [yasko says 200 mcg - is that right?] is there any b12 and folate ratio for stable effect? dr vinitsky mentions tooo much folate - I think. for me dr neubrander or fredd or dr ray strand style heavy dosing will not do for mr. I am verrry hypersensitive. physically very weak. and very weak digestion. will it be ok if I take 5 mcg hydroxyb12 daily with 200 mcg methylfolate and 625 mg calcium carbonate (elemental calcium 250 mg). please adjust dose for me. I am prepared to take very low doses [something better than nothing. very slow results is fine but, this weak useless life is of no meaning] - even lower doses is fine - but, I should not get hyperexcited or get insomnia or diarrhea or undermethylated. please decide the correct dose considering my weak brain and body. due to long time low cerebral calcium - I cannot even take a full b-complex tab as that overstimulates my brain. also please consider my weak stomach.

    7. I think it is better to take calcium, and b12 and folate - all together? what do you say. [later on - was thrilled to read that dr vinitsky mentions folate and b12 taken together].

    = both taken at breakfast or lunchtime (earlier in the day during daytime) to fix my circadian clock. what do you say?

    8. I think I should avoid BOTH aspartame and MSG. what do you say?

    9. BRAND dr vinitsky mention perque brand for hydroxyb12. rich what is your suggested brand for hydroxyb12? where to buy?
    and rich - which brand do you suggest for metafolin in my case? solgar? or should I take folinic acid (please suggest brand).

    10. route of administration: vinitsky says ONLY sublingual for BOTH folate and b12 - or else there may be a problem. what do you say?
    = if you suggest metafolin for me - is it available in sublingual form?
    = is it ok to take sublingual b12 along with oral folate?
    = if the hydroxyb12 is only available in high dose (perque is 2000 mg) - is it ok to dissolve in water and take right dose (after how many minutes? can chemical reaction if watery solution is used?)
    = will sublingual be easier on stomach?

    I have suffered for years. kindly help with your inputs.

    if your inputs help me regain my strength and life - I will not be able to thank you enough. please do help me. you will be helping a very sensitive and intelligent person who wishes to help others. FEEL FREE TO TAKE ANY FEES FOR ONLINE INTERACTION. please help - the doctors here are totally useless. if possible please communicate with me DIRECTLY by email frequently.


    regards

    b12
  11. richvank

    richvank Senior Member

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    Hi, B12.

    I do offer paid consultations. However, there is a forum rule against advertisement, so please email me directly at richvank at aol dot com to discuss paid consultations. Thanks.

    Rich
  12. madanthony

    madanthony Guest

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    B12, um...

    If anyone who is not a doctor acepts money for giving you their opinions it probably makes it illegal. just thought I'd caution you.
  13. richvank

    richvank Senior Member

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    Hi, madanthony.

    In California, the state Business and Professions Code provides for the practice of unlicensed providers of alternative and complementary health care. It is legal, provided that certain requirements are met, and I comply with these requirements. I also choose to require that a licensed physician be involved with each case to evaluate any treatment suggestions I make, even when they do not involve prescription drugs.

    Best regards,

    Rich
  14. Freddd

    Freddd Senior Member

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    Hi B12,

    If you send me your email via a private message on this forum we can discuss things privately. I'm a consultant to group health organizations. The laws in Utah are such that I can't do private consultations with the safety that Rich Vank can do in California. For a state full of people saying they hate gov't control they have the state controling every aspect of their life and seem to want more and more intrusive gov't all the time (political commentary) with the states nose shoved so far into everybody's collective rectum that they know what you had for breakfast 10 minutes after eating.

    If you observe the people taking hycbl on this forum who have continued to do so for the most part they are all just as sick as a year ago though things may have shift about. That is because hycbl is vastly inferior to mb12/adb12 in almost all ways. Depleted methylation (methylation block) appears to be largely a methylb12 deficincy symptom. A person taking mb12 and methylfolate, both the NATURAL ACTIVE FORMS NATURALLY FOUND IN THE BODY, does not develop methylation block. Methylation block is an artifact of hycbl and/or cycbl and/or folic acid.

    At no time do people ever demonstrate sufficiency of mb12 and adb12 at any time following an indefinite perdiod taking with methylfolate. Even if hycbl is marginally effective on a few b12 deficiency symptoms most of them will be unchanged or worse after a year of hycbl. Often the startup repsonse increases in strength after hycbl because the person is more deficienct than ever in many ways.

    The more I see from people here and elsewhere the more convinced I am that hycbl works poorly at best and not at all for 1/3 of people as demonstrated over and over in research on the measures of effectivness being researched. If you want to get better it won't happen on hycbl. You are welcome to try it first and then switch to an active b12 protocol. It does require more self responsibility and the willingness to tolerate the startup responses of something 100x more effective than hycbl. Becasue of that it seems counter intuitive. I've actually tread that path and learned to recognize the signposts of healing via mb12/adb12, and healing can be hell for a while. I sure you won't mind another year or two of sufferring to support other people's theories. I am not working from any grand theory, just my own recovery and the recoveries of many others. I'm a hard headed systems anlayst and group health consultant. I don't believe in many peoples pet theories just becasue they "ought" to work. For hycbl to work all pieces of the many assumptions must be in place. If somebody's system were fully functional about b12 they wouldn't be sick and posting here in the first place.

    I have already said everything I could possibly say on this forum and others. If you want to contact me do so as I mentioned at the start. If I did charge I would affer a money back guarantee of results as I do with my clients
  15. zoe.a.m.

    zoe.a.m. Senior Member

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    Can you go into a little more detail about tolerating the startup response? B12 shots made an enormous difference to me for about 5-6 wks and I've been having escalating problems ever since. (The shots are cyanb). I am trying to get a sense about whether or not my "new" problems have anything to do with the B, as it seemed to help so much in the beginning.

    Question for anyone trying/with knowledge of B: Is it quite possible that different forms will work for different people for various reasons and should we base our protocols on what we respond to?
  16. richvank

    richvank Senior Member

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    Hi, Zoe.

    I don't know how large the dosages were in your shots, but I would not recommend getting cyanocobalamin at dosages of milligrams repeatedly if you have CFS. Cyanocobalamin contains cyanide. The human body normally has four ways of detoxing cyanide, including reaction with thiosulfate, pyruvate, alpha ketoglutarate and hydroxocobalamin. However, I have studied one case of CFS in which all of these were depleted. The person was taking several milligrams of cyanocobalamin per day, and became very ill. Treatment with hydroxocobalamin and oxygen was necessary to counter the cyanide toxicity. I think this can be life-threatening. Most people can tolerate micrograms-type dosages of cyanocobalamin, but the larger dosages can cause problems for some people. Cyanocobalamin continues to be sold as the main B12 supplement because it has a longer shelf life and is thus less expensive, but it's not the best form of B12 for the human body.

    In CFS, I think it is true that depending on a person's genetic polymorphisms, she or he may do better with hydroxocobalamin or with methylcobalamin. Dr. Amy Yasko emphasizes this in her treatment of autism, which in my opinion shares the same basic biochemical issues with CFS. She bases the choice of B12 forms on characterization of polymorphisms in the genes for the COMT enzyme and the vitamin D receptor. It's important to have enough methylation capacity to produce methylcobalamin in the cells, which they need as a coenzyme for methionine synthase in the methylation cycle, but excess availability of methyl groups may cause problems. Normally, the availability of methylation capacity is limited in the cells by the enzyme glycine N-methyl transferase, which shunts excess methyl groups to glycine, forming sarcosine.

    Best regards,

    Rich
  17. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Hi Rich,
    The shots have been at 1000 mcg/wk for 5 wks and then every other week. Remarkably, in the first month or so, my myoclonus issues dissipated for the first time (I had this problem as long as 19 years ago, but only for short periods of time and seemed to be related to working outside in hot weather or doing demanding manual labor). In the past several years, it has become a problem of epic proportions. In the last 3-4 wks it reappeared, and has been intractable despite magnesium, klonopin, and more. It could be related to the B12 (as I was surprised that I had no issues tolerating the shots--and expected a negative reaction--as is usually the case with meds/many supplements), but I really have no way of knowing. I went from feeling that I had essentially "kicked" the myoclonus (it is mostly in my shoulders, forearms, hands, neck and face, oddly), to an "attack" that is more resistant to treatment than any before.

    The doctor I began to see over a month ago (have only seen him once) mentioned wanting a tissue hypoxia test done, and I have wondered if, because of feeling improvement and being more active--this is all relative of course, that I have pushed the hypoxia and now am suffering the effects. As far as side effects go though, or just symptoms, PLMD is the most intolerable, and so I've been scrambling for possible answers.

    I'm not familiar with the "polymorphisms in the genes for the COMT enzyme and the Vitamin D receptor" and not sure of what that means. I do know that I had a D level of 12 when tested earlier this year and had been supplementing 2-4,000iu/day (though not every day) for over a year prior to the test. I was told to take 10,000iu/day for 2 wks, then 5,000iu/day for 2 wks, etc. and was tested about 7-8 wks later and my level was close to 30. I'm not certain if this ties into what you mentioned or if I am just borrowing the "Vitamin D" out of that sentence and applying it to my results!

    The current doctor whom I've seen once gives 5-10,000 mcg of methylB12 as often as 2-3 times/wk, depending upon the patient and their reaction. I chose not to go that route as I was having positive results with much less. I need to double check that I am taking the cyan form and not the hydroxyB12 as the vials are at my local practitioner's office. A few weeks ago, when I started to have the reappearance of myclonus, I decided to buy the Perque B12 so that I could supplement more as needed (thinking more would be better) and Folapro. The shots themselves are an issue as they leave me extremely bruised if not done IM, which caused too much local pain. At this point, I'm too exhausted to even consider trying the Perque and Folapro. It sounds like some members here are taking very small doses in order to tolerate the side-effects.

    Thanks for your reply,
    Zoe
  18. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Zoe,

    The human body utilizes adb12 and mb12 for all functions. Cycbl is a waste prodeuct of detoxifying cyanide. From your description you are having the same problem with cycbl that many people have, an initial period of some results and then escalating problems as the cycbl induces the methylation block and cyanide builds up.

    Cycbl and hycbl do nothing at all themnselves. Hycbl has the advantaqge over cycbl in that it can detoxify the cyanide and cause it to be excreted as cycbl They both, however, have to be converted to the two active forms which happens to a very small degree in some people for a while. They are expensive in terms of body resources to convert to active forms. Mb12 and adb12 work about 100 to 10,000 times better than cycbl and hycbl. Instead of causing methylation depletion or block they prevent it.

    I do not agree with those that state that some genetic variation do better with hycbl. If necessary, limit the amount of mb12 if there is actually any evidence of "over-methylatiom", but in the beginning that would never be necessary. I did a comparison of symptoms listed as being characteristic of people with "over-methylation" and of people with "under-methyaltion". I found that most everything listed on BOTH those lists were straight out mb12 and adb12 deficiency symptoms. I had approximately equal numbers from both lists as did many other people. This comparison is listed on the B12- Hidden deficiency thread. Working with those lists of symptoms appeared to indicate that the people promoting those lists as supporting under and over methylators theory have no idea of what they are talking about.

    If hycbl actually worked in any significant number of people with CFS/FMS (and I have no idea whether or not autism is included with those with any common mechanisms) Hycbl would be better at produing results than it so obviously isn't. From all the reading I have done here and elsewhere I would estimate the "cure" rate with Hycbl for CFS/FMS at less than 1 in a thousand and maybe less than 1 in 10,000, assuming all needed cofactors are also taken. With mb12/adb12 plus cofactors I would estimate the cure rate at perhaps 1 in 5 or 1 in 10 or thereabouts depending upon definitions and actually following through on many factors and exercise. And I am speaking of the ability to return to normal life with normal exercise ability and the almost complete if not complete removal of the relevant symptoms. However, symptoms due to actual neurological and other damage can take longer with autoimmune damage persisting for life. As exercise is important for some of the recovery to provoke the muscles to heal and grow and for rehabilitation the rehabilitation can take years longer than the main part of the healing. A high percentage of people will have a large reduction of symptoms within a year on the active b12 protocol including ALL needed cofactors sufficient to begin the rehabilitation part. For instance muscles might not be able to start healing or growing until adb12 and l-carnitine are present on top of all basics and any other critical cofactors needed.

    Understand I am not basing this on a theory or on a theoretical interpretations of genes or results only seen on lab tests. I'm basing it on the things I have worked with for years, symptoms and utilization review from a purely pragmatic basis and outright naked eye healing. On the hycbl protocol only one or two people have ever been known to actually recover. It is as rare as hens' teeth.

    You can always try the hycbl protocol for a year and then when you are not largely recovered switch to the active b12 protocol. However, startup will be worse because some of the symptoms will have comntinued to worsen. Startup with the active b12 protocol might be a real knock your socks off experience anyway as the body processes are kick started. I urge people to take potassium as part of the minimum right from the start because so many people have hypokalemia with the sudden start of cell formation. That doesn't happen very often with the hycbl.


    Good luck.
  19. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Thanks for your reply Freddd,
    What are the cofactors? Is potassium one of them?

    Surely by now I am confused as I thought Perque was strongly recommended! Where is the document that states what protocol you are doing? I think I've done a lot of searching on the site and haven't been able to find it, and am still working my way through the B12 thread.

    How do I find out if I have in fact built up a cyanide problem? Regardless of a test, how do I get get rid of it (or can I?!)? Are myoclonic jerks what you mean when you refer to startup (or are the startup effects from the "active" protocol different from the toxicity associated with the cyanB? Now, on nearly 2.5 wks of almost no sleep, I can honestly say that I'm terrified of taking B12 at all. I am having difficulty understanding why I would get such profound (relative to ME/CFS-world anyway) effects with my nervous system calming down and then have it overload like nothing I've experienced before with the exception of trying to wean off of clonazepam?! Unfortunately the doctor who prescribed this and the doctor giving me the shots have no insights into any of the problems I've described and neither of the protocols mentioned here.

    Is there info anywhere on this site that keeps track of who is using which B12?

    Most importantly, since this myoclonic nightmare seems to have no end in sight and can't be controlled with meds: will it end? Will the effects wear off in time (and how long can a person go on like this before they're cooked)?

    I'd like to know as much about all B12 info as I can so I can make the best decisions for myself based on my results so any references I should look at are most welcome.

    ETA: I see you mention a poll/comparison list on the B12 thread and mention detoxifying cyanide with Hycbl. How/how much Hycbl should be used to detox and how does one know if it's working?

    Is there an antidote for B12-induced nervous system problems to at least get the body back to baseline and stabilize?
  20. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Zoe,

    The results from Hycbl and/or Cycbl in no way predict the results of mb12/adb12. They can cause problems for different reasons than startup of stalled b12 deficiency processes. They can make some deficiency symptoms much worse. When mb12/adb12 are started they often have starttup symptoms. With those the things that react the most to begin with are frequently the things that produce the most results soonest. With mb12/adb12 they are signposts of healing. With Cycbl and Hycbl reactions are no indication of healing of any kind. They can be signposts of worse deficiencies symptoms.

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