1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    757
    Hi, freddd.

    I'm glad you liked reading my hypothesis. I think we are in substantial agreement about how this type of protocol works. The basic essence of our two treatments is essentially the same, in terms of including B12 and 5-methyl tetrahydrofolate, with some cofactors.

    I understand what your views are about the need to use methyl and adenosyl B12 rather than hydroxo B12, and also your views about the need to use higher dosages of the active B12s. These make particular sense to me for people whose cells are genomically not able to do the conversions, but I agree that this approach will also work for those whose cells can make the conversions, so in that sense, your protocol is a more general treatment than the "simplified treatment approach" that I have suggested for CFS.

    As I think I've mentioned before, Amy Yasko bases the choice of whether to use hydroxocobalamin or methylcobalamin on the person's individual genomics. In particular, she looks at polymorphisms in the COMT enzyme and the Vitamin D receptor. For people who have a greater need for methyl groups, based on whether these polymorphisms are present or not, she recommends methylcobalamin. In choosing the supplements from her overall treatment program for the "simplified treatment approach," I chose hydroxocobalamin because of my concern about moving mercury into the brain, as I've mentioned. I think that inorganic mercury is more of an issue in CFS than in autistic children, with whom she primarily works.

    I still haven't gotten to studying your mathematical model involving mercury. Sorry about that. It may be true that with high enough dosages of methylcobalamin, mercury can actually be removed from the brain, as we have discussed earlier, but I don't have clinical or experimental evidence to support this mechanism, so for now I feel that I have to remain cautious about the possibility that such an approach could move mercury into the brain from elsewhere in the body.

    As you know, my other concern has been that it has seemed to me that many people cannot initially tolerate dosages as large as you have suggested. I think that some people have also been reporting here that they need to take the treatment more slowly, in order to be able to tolerate what appear to be dieoff and/or detox symptoms. That is what I have found with the "simplified treatment approach," also.

    I agree that we still have more to learn about everything that is needed to bring full recovery to everyone with CFS. I hope to live long enough to see that happen!

    Best regards,

    Rich
     
  2. imgeha

    imgeha Guest

    methylation block hypothesis / heart function - Rich

    Hi Rich

    Well, that's certainly given me something to chew on!! I think you used the phrase 'trying to drink from a fire hose' in another post, Rich, and now you've done it to me!!

    I certainly find it useful (I'm one of those people who has to know WHY things happen as they do), and obviously others are also finding it helpful. Many many thanks for your input here and patience with basic questions. I have been trawling all over google for answers, but get the most comprehensible ones here...

    Feeling ropy today after one whole tablet of methylfolate yesterday (plus the other Bs) but onwards.. I'm convinced this is the right thing for me to do, it all makes sense. Thanks again.

    Nicola
     
  3. dmholmes

    dmholmes Senior Member

    Messages:
    326
    Likes:
    78
    Houston
    Rich, thanks for the great info. I was reading this older piece by Dr. Bell on low blood volume and vasoconstriction. Definitely makes sense for my OI.
     
  4. klutzo

    klutzo Senior Member

    Messages:
    543
    Likes:
    10
    Florida
    Does B12 deficiency prevent cancer? Also, Update

    Dear Kim and Fred,
    Regarding your posts about whether or not B12 deficiency might prevent cancer:
    My mother had pernicious anemia and so was severely deficient in B12. It was a long time ago, and despite monthly injections, she wasted down to 62 lbs. and died of malabsorption at age 60.

    Recently, in discussing my 20 times increased risk of stomch cancer due to my father and grandfather both dying of it, combined with the fact that I already have a precancer in my stomach, detected by EGD, plus the fact that having my gallbladder out caused me to develop bile reflux gastritis, a precancerous condition in itself, I was asking my GI doctor what my total increased risk of stomach cancer was and was shocked to find out that my mother having had pernicious anemia also confers a 20 times INCREASED risk of stomach cancer. I had no idea there was even a relationship between haivng PA and having cancer. Having blood Type A also confers increased risk of stomach cancer, and I am blood type A. Needless to say, I get an EGD done every year now, but am not suffering any delusions. Stomach cancer is still a death sentence.

    So, I would be very surprised if B12 deficiency protected against cancer, since it definitely raises the risk of stomach cancer substantially.

    klutzo

    P.S. UPDATE to anyone reading this: I am finding dramatically increased energy on the B12 program, but I only need the dosages on the bottles. I take one B-Right daily and one folate every other day on an empty stomach to keep it away from my pancrelipase, and I take one SL B12 under my top lip every day, alternating the ADB12 with the MB12. I take potassium and calcium once daily, krill oil and lots of vit. D, and one tab of TMG daily. Taking more made no difference over the more than a month I've been playing around with this.

    It has not improved my severe brain problems, but it may not be the culprit. The scariest problem, which developed just this past year, is that I cannot walk and talk at the same time or gobbledegook comes out of my mouth. I must stop whatever I am doing for my speech to make sense.

    I discussed this with my Cardiologist, since he is the only one of my team of 4 doctors who really spends time with me and listens, and he surprised me by saying he is convinced my high blood pressure medication is to blame for that problem! It is what docs call a "bad" drug, used as a last resort, since none of the other medications lowered my blood pressure at all. It also helps prevent seizures and helps with pain, and I find it a magnificent sleep aid and a big help with overstimulation, but it has a dark side. So, here is the moral of my story: Do not take Clonidine if you can avoid it, and do not assume that all your problems are due to undermethylation.
     
  5. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City

    Hi Klutzo,

    B12 deficiency does appear to cause some varieties of cancer and is being investigated in that regard in at least half a dozen varieties. However, the question was concerning whether once a cancer has started whether b12 accelerates or retards cancer growth. If as one study claims, b12 appears to accelerate cancer growth, does it's lack retard growth? However it was cyanob12 in the study so that in no way answers the question about mb12 and/or adb12 which may be totally different as cyanob12 is not the same and doesn't have the same effects. It can cause worse deficiencies of some kinds.

    Glad to hear that the active vitamins are helping. Have you tried the CNS/CSF 50mg doses yet? Some people find that only these help with the brainfog and other CNS issues. Whether one or both varieties help is individual.

    Have you tried the l-carnnitine fumarate yet?
     
  6. klutzo

    klutzo Senior Member

    Messages:
    543
    Likes:
    10
    Florida
    B12 and cancer

    Dear Fred,
    Thanks for the clarification of the cancer issue. This issue of helping the pathogen to grow is the same issue I saw in an article which said folate makes existing cancers grow. As a Lyme Disease patient, I constantly deal with this issue. Borrelia steals my B vitamins and ravages my magnesium stores, so taking those supplements is considered to be feeding the pathogen, but I would die without them, so my response is to take more, so I have enough for basic bodily functions after the pathogen takes it's share. It is a trade off to be sure, but I suffered from arterial spasms that brought me to my knees before I started taking large doses of magnesium, and that scared me into the point of view I now hold on this issue. Thank God Magnesium is so cheap that even I can afford it.

    I have l-carnitine in my multivatamin. I tried fumarate awhile back with no difference in results. Funds are sorely lacking to try any new items right now, and we may have to drop all but the most essential supplements soon. My husband is lucky to have 1 or 2 days of work per week now, where he normally works six days per week, and since he is self-employed, he can't get unemployment benefits. We have already cut everything else there is to cut and are lucky that we have no debt, unlike most people.

    klutzo
     
  7. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City

    Hi Rich,

    Most of the people who respond to active b12s have separate reactions to each form, far more than would be predicted by what are presumed to be relatively rare genetic variations. So either those genetic variations are just rarely recognized or there are more of them or something. Maybe they are what make us more susceptable to the viral onset of CFS and the traumatic injury onset of FMS. Maybe they impair our immune systems just enough to make us more susceptable. So perhaps there is a selction process that concentrates the "rare" genetic variations within the CFS/FMS set. Each active b12 relieves overlapping, but different, sets of symptoms. So generally, the endothelial, epithelial, neurological, CNS neurological and neuropsychiatric effects of ME, CFS and FMS tend to be related to mb12 deficiency. The severe fatigue, muscle problems, muscle pain, and certain CNS effects map to the adb12. This is very simplified but holds up pretty well. It can be demonstrated quite easily in the majority of responders.

    It is very clear that having the very unnatural situation of ample unbound mb12 and adb12 allows each of them to be used where needed at rates far outside the range that the body can transport and interconvert. This can start occurring within 5 minutes of starting a sublingual. All of the presumed interconversions and transport systems all serve as bottlenecks or keyholes. A single dose of adb12 can produce mitochondrial effects not matched in years of taking inactive b12s in any quantity.

    In people having a depressed CNS cobalamin level, and looking at the doses needed of active b12s to overcome that, it's clear that this identified characteristic of CFS/FMS can never be changed by any quantity of inactive b12s. This is relatively easily demonstrated pragmatically. Unfourtunately without a lot of money the study can't be done.

    These large doses should not be done until after a body level saturated equilibrium of the b12 in question, is achieved. Even the best sublingual can be reduced to the 1% absorbtion rate of an oral form merely by chewing and swallowing immediately. It has always been easy to have very low absorbtion rates. The challange is to have a high enough absorbtion rate to heal.

    One of the things that shows up in suitable studies is that with methylb12 there is dose proportionate healing unlike with specifically cyanob12 and hydroxyb12. There are so few studies using adb12 that it is difficult to say anything about it based on studies.

    In my own experience and observation and correspondence with hundreds of others, it is not a linear dose proportionality. It's more like twice as much increases healing half as much as the previous increment. Then there is a threshold of response in the CNS at a certain high level of dose and no more apparant dose proportionality after that.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,106
    Likes:
    6,088
    Albuquerque
    Nicola: dysautonomia & methylation

    Hi Nicola,

    I haven't been on the forum for a bit and just saw the latest on this thread. I am one of the ones with an original dysautonomia/OI diagnosis who has been on Rich's Simplified Protocol for nearly 2 years. I have also had what appear to be "heart" symptoms in the past but they have now mostly disappeared. I don't know whether I have primary dysautonomia or dysautonomia as part of the ME/CFS syndrome--though I have had ANS symptoms since childhood.

    In the course of my 2 years on the methylation protocol I have had some pretty difficult detox reactions that made me lower my hydrox B12 and folate doses to a "sprinkle" level. I believe I have a very high toxic load from being sick for so long and pretty likely having a partial methylation block for many years--hence an accumulation of toxins.

    I have recently begun some experimental protocols to reduce toxicity and am now again able to tolerate Rich's recommended doses of the methylation supplements.

    So, from my experience (which of course may well not be yours), improving methylation has greatly improved my dysautonomia symptoms. I am almost off drugs and never have to do a "quick sit on the floor" anymore. Yes, it takes time, but it took time to get so sick too. I'd say keep at it but watch carefully for signs of too much detoxification as sometimes it can take a couple of weeks to get out of detox hell.

    Best wishes!
    Sushi
     
  9. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Thanks for all the good input on this thread lately. It all makes good and coherent sense. Freddd I have the methyl and adentsol and metafolun. Question is when to try a sprinkle. Today has been a bad day and I want to try on a day I am clearer.
     
  10. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City
    Hi Jenbooks,

    I would also suggest doing it before noon. Mb12 causes melatonin generation later and they both will tend to increase nervous system function and metabolism. If you start with a crumb, you can always do several crumbs. With both b12s in a sublingual mode, increase in effects tends to halt 5-10 minutes after you chew and swallow as the absorbtion decreases significantly. As the reaction to methyfolate is mixed that's a tougher timing issue. Some get drowsy, some get aroused and many have no significant effect separate from it's effect on utilization of mb12 and adb12. Start with the 1mg mb12 sublinguals for breaking up. Both are there because of your known sensitivity to miscellaneous components. Whether you start with the adb12 or mb12 is your call. Adb12 has less potential for startup effects.
     
  11. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    I didn't open your package yet as it says light sensitive. I will start with a smidge of adenysol. I don't have perque here.

    Rich talked about Amy Yasko's fine tuning. I'm an overmethylator she says. So I suspect she'd recommend hydroxy for me as I apparently dump noxious byproducts down my bathtub drain (I remember the visual). I need to plug the drain and convert my methyl groups properly.

    I have a feeling it's the methylfolate that will be tough on me or else miraculous or both. I don't make enough methylteyradydrofolate (forgive typos I'm on iPhone). It's clear as day when you look at my SNPs.
     
  12. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    948
    Likes:
    91
    cofactor magnesium

    hope this is not too off-topic.

    I have been doing some form of methylation support for a couple of years now. Recently I started experimenting with putting mag chloride crystals in my bath.

    I found it gave me a lot of energy and a lot of detox. Stomach-curdling, morning toxin dump detox...and by that I mean nasty stomach sensations which I assume are caused by the liver dumping toxins in the early morning.

    My reaction makes me think I wasn't getting any benefit from those huge magnesium horse pills I was taking, and at one point I was taking the yasko dose of 6 or so a day.

    It seems like most of us get a much better bang for our buck, or response from IV/IM than just oral supplementation.
     
  13. imgeha

    imgeha Guest

    Hi Sushi

    it's really encouraging to hear of the improvement in your dysautonomia. And yes, I will push on. I haven't read anything elsewhere which makes as much sense, and a lot of the dysautonomia forums are floundering around with various treatments, but no cures, as far as I can see. I see Rich has even been on some with his methylation block hypothesis, and didn't get a good response. Well, I'm another guinea pig for the methylation / active B12s protocol.

    I hear what you say about detox momentum. I'm hoping I can tolerate 1 tablet of metafolin / day without feeling too bad, as I have already done 2 years of DMSA / ALA chelation to reduce mercury body burden, and will continue to chelate throughout this to take the edge off detox. I have had some improvement already, but it's not reliable from day to day. It's a journey, that's for sure.

    Thanks again

    Nicola
     
  14. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City
    A small update on my glutathione precursor experience.

    The recovery period of the NAC/glutamine specific problems now appears to have come to an end. I'm back to approximately where I was before starting except for my muscles which still have more pain, but much more defined now. This kind of pain took months to clear last time As I described a couple of days ago the specific pain and inflammation caused by NAC/l-glutamine has finally faded. A little less noticable is something that happened 6 years ago in the initial period of mb12. As areas of generalized pain decreased, quite suddenly the perception of all sorts of specific pains sharpened, became much more defined. This clarity of perception has been lacking the last 10 months or so. This is such a major defining part of the mb12 experience, this clarity and sharply delineated perception; out of the fog, into the smog.
     
  15. Sunday

    Sunday Senior Member

    Messages:
    732
    Likes:
    31
    Thanks to Rich for the clear laying-out of methylation theory, and to Freddd for his elaborations on it.

    I'm pretty spacey right now but I will say that I'm one of those who responded strongly to methylfolate and my own experience has been that the adb12 reactions were often pleasant and the bad ones not nearly as debilitating as my reactions to mb12 when I started it and to upping mb12 last week: OI, brainfog (but a lighter, better quality of brainfog), depression, fatigue, nausea blahblahblah. The methylfolate reactions were similar to the mb12 ones, though there may have been some differences. Possbily the fatigue is still due to adding the methylfolate ten or so days ago. Dunno.

    klutzo, glad to hear news from you and that you have at least one dr. who's paying attention. Is there some alternative to Clonidine that would work for you?

    I'd be interested to hear opinions about the magnesium (epsom salt) baths and how they might work (or not) with the B12 protocols.
     
  16. _Kim_

    _Kim_ Guest

    Freddd?

    After a week of taking all of the other essentials (Mg, Vit.C, zinc, potassium, Vit. D3, ALA, carnitor, B-right) I decided to start adding the active B12s in today. Despite all the suggestions to start with crumbs, I decided to start with one whole 3mg tablet of adB12 and figured if I started to have some discomfort, I would just take it out of my mouth. I kept it there until it dissolved - about 90 minutes. There were no changes observed. Then I got courageous and stuck a 5mg mB12 up there. Kept it there for 2 hours. No changes observed. I was expecting something - especially after reading all the cautions here about startup. So, later, I tried another 5mg mB12 and kept it there for about 90 minutes. No changes observed.

    Maybe I don't have a B12 deficiency? I think I'll try adding more mB12 tomorrow. Maybe start the Metafolin?

    Freddd, what do you suggest?
     
  17. imgeha

    imgeha Guest

    I can echo Sunday's experience. The methylfolate has been like rocket fuel for me. I have had a couple of herxheimer toxin dumps and general detox on 1/2 tab of metafolin and 5mg B12, and was pulling through that and beginning to feel quite OK. I have now upped the metafolin to 1 tab / day and am in serious detox - nausea, brainfog, bad sleep, feeling blah, fatigued, big metal taste. I accept that I have to go through this to get better though :-( so I am hoping I can see the detox through at this level.

    From what I have experienced so far, the detox generally lasts one or two days, and then you start feeling better at that dose, so hopefully it will be the same with the metafolin.

    This stuff is powerful!! Be warned!

    Nicola
     
  18. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    918
    Salt Lake City
    Hi Kim,

    Maybe I don't have a B12 deficiency?

    It's much to early to come to such conclusions. It can take a year for the neurological effects to really show. Until you have added in methylfolate, zinc, b-right, magnesium, l-carnitine-fumarate, alpha lipoic acid, SAM-e, all the rest of the basics and critical cofactors and then try the 50mg singles doses of both mb12 and adb12 to test for CNS/CSF deficiency there is no way to know whether these will benefit you. So far you have only taken the first step of many. For many, the effects don't show up until some multiple doses have been taken over multiple days. For some the effects don't show up until the right combination of cofactors and critical cofactors are taken. The lack of certain basics and critical cofactors can completely preventy any response. I've even talked with somebody for whom the critical key was omega3 oils and another for whom it was 5000 IU of vitamin D3.
     
  19. _Kim_

    _Kim_ Guest

    Hi Freddd,

    Thanks for the encouragement to continue on. I did the same dosage as yesterday (3mg of adB12 and 10mg of mB12).

    After all that I've read here, I'm now confused at what is the maximum absorbancy for those two products. In other words, how much of each am I aiming to titrate up to?

    If all goes well, I'll keep upping the B12s quickly until I get to max. dosage, then I'll add in the methylfolate. At this rate, it might only take a few days to get there. Of the basics and co-factors you mentioned, the only one I'm not taking is the methylfolate and the SAMe.

    Thanks for taking the time to answer my questions.
     
  20. Sunday

    Sunday Senior Member

    Messages:
    732
    Likes:
    31
    It's so interesting to see how this parses out for all of us, I learn a lot here. I'd be interested in the answer to Nicola's question, too.

    I will say that assuming your reaction to upped dosage will only be a day or two can be dangerous. I say that because I just assumed it and really bit the dust. The first time I got on mb12 I was in bed for a week with the full panoply of symptoms; when I upped dosage the first time, the effects were much less severe than starting, and lasted only a few days.

    Then I added methylfolate to the mix. That was a rough ride but about ten days later I felt I was stabilizing a bit so upped my mb12 dosage again. Well, that was on Tuesday and while Tuesday morning I had great unprecedented amounts of energy (haven't sprinted across a street between cars for quite a while), I rapidly crashed that afternoon and have remained crashy since. Pretty badly crashy, though I've been able to stand up and do a few things around the house in between bedrest.

    This last crash has been disheartening, and I don't know if it's just the course of the disease, the mb12, or adding the methylfolate and then taking mb12. I just missed a good friend's 60th birthday bash last night because I wasn't standing or computing well; I'd calculated that I'd be over the worst of my dosage-upping crash by then. I was wrong. This illness is wacky, and so it makes a weird sense that reversing it to any extent might get wacky, too. I find it tough to count on any pattern even in myself, much less that my pattern will match someone else's.
     

See more popular forum discussions.

Share This Page