Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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B-12 - The Hidden Story

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

  1. mtnwoman

    mtnwoman

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    Fredd, are you familiar with Pure Encapsulations B Complex Plus? It looks to me to be a better formulation than Jarrow's B Right. Pure Encaps. product has the pre-activated forms of several b vitamins and active folic acid (methlyfolate) and MB12:

    Each capsule contains: B-Complex Plus
    Supplement Facts

    each vegetable capsule contains:
    thiamine HCl (B1) 100 mg.
    riboflavin (B2) 5 mg.
    riboflavin 5’ phosphate 10 mg.
    (activated B2)
    niacinamide 100 mg.
    inositol hexaniacinate 10 mg.
    (no-flush niacin)
    pyridoxine HCl (B6) 10 mg.
    pyridoxal 5’ phosphate 10 mg.
    (activated B6)
    pantothenic acid 100 mg.
    (calcium pantothenate) (B5)
    methylcobalamin (B12) 400 mcg.
    folate 400 mcg.
    (as Metafolin, L-5-MTHF)
    biotin 400 mcg.
    vitamin C 16 mg
    http://www.purecaps.com/itemdy00.asp?T1=BCP1
     
  2. Freddd

    Freddd Senior Member

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    Hi H4house,

    Allergies, food, drug and chemical hypersensitivities, skin problems and all those thinbgs are characteristic of methylb12 deficiency and methylfolatye deficiency. Since starting mb12 I have discontinued taking all the vatious antihistamines and asthma meds since I no longer need them. When I took the glutathione precursors and it induced immediate severe folate and b12 deficiencies the allergies came gallopping back. When I took a much larger dose of Metafolin I statrted recovering immediately from the deficiency symptoms and I had startup symptoms all over again with a sizable mb12 injection and an 18mg SL dose of adb12. Headaches are a very common b12 deficiency symptom. I used to have chronic daily headaches that exploded to killers each 2 weeks for 3-5 days.

    Any research based on Cycbl, Hycbl and/or folic acid may not apply to mb12madb12 and/or Metafolin. These active forms appear to counteract histamine formation and reduce inflammation..
     
  3. Freddd

    Freddd Senior Member

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    Hi X,

    You have put your finger on it. At no point is a big flag raised saying "THIS IS ThE LAST TIME YOU WILL HAVE XXXXX". So nothing calls our attention to it. I don't remember the last time I had antibiotics. It was some time not long before my first mb12. Nothing announced "Last Time". However instead of averaging antibiotics 3-6 times a year for decades I haven't had a single instance in 7 years so clearly something has changed. If you don't keep track you might not even notice as things fade away.

    From where I sit now I can hardly remember what my life used to be like. I find it rather unbelievable myself, that it was so incredibly awful. When I go over the list of symtoms I can say yes to a lot of them for those period but somehow that doesn't sum up the experience of living like that. I've had to readjust my definition of "normal". I was 39 when I crashed. I'm 62 now and things just are not the same as 23 years ago. As I have similar old pains from old injuries as my friends and I don't feel 25 any more nor do my friends I can only assume that comes with age. Other that that I am as healthy as any one my age I have come across.
     
  4. Freddd

    Freddd Senior Member

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    Hi Tal,

    I don't have an answer for you. I find I can't avoid folic acid and that it in no way substitutes for Metafolin. So I choose to fight the battles I might be able to win. With folic acid so widespread it is nearly impossible to avoid it, lots of effort involved. Even if I were to succeed 100% avoidance it is unlikely to make a significant effect. The cost of 100% avoidance in effort is large with a small or nil potential payoff. Many other things have a superior cost-benefit ratio for me so I do better expending my energy in that direction. Taking Metafolin makes a sizeable difference for me. Avoiding folic acid appears to make no difference. Perform your own trial and see if you notice any difference. I noticed an immediate differnece when I added Metafolin. It is possible to avoid folic acid for a week or two and see if it makes a difference when you go back on. If you do that 3 times you will have a good chance of seeing if it is worth the effort for you. There can be a significant difference between a theoretical ideal which may have no payoff and actual pragmatic results. Good luck. According to some theories hycbl "ought" to work better than mb12/adb12 for some people. However, I don't see anywhere near as many people having substantial recovery with it and returning to a normal life as I do with active b12s. Choose your theories and test them.
     
  5. Freddd

    Freddd Senior Member

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    Hi Rich,

    I think it necessary to demonstrate the problems of the assumptions built around the inactive vitamers of Cycbl, Hycbl and folic acid. These flagrantly false assumptions cause immense amounts of disease and misery. YOU might not believe them as you are clearly aware of the problems with folic acid, at least to a certain extent but they present very real problems for those of us out in the world trying to get treatment. I wanted to continue living and have a decent life to live. There doesnt appear to be a physician in the USA that was able to figure that out for me. The why of that is critically important to our entire system of medicine. By having found the solution, and I have to say it wasnt that difficult, the causes of the problem become obvious. It took me 9 months of journal and internet reading when I wasnt able to read half the time due to neurological visual problems caused by the unknown problem. In the following 7 years I have done some very basic fundamental research doable at home, with trivial instrumentation, by anybody so inclined, which has answered many basic questions. As always, in order to get worthwhile answers one must ask worthwhile questions. Sometimes it is important to ask the apparently too simple to bother with questions in order to get fundamental answers. So I asked them. Nobody else has who has published their work that I was able to find.

    1. Are there differences amongst brands of methylb12 sublinguals in vivo? Yes. The differences between brands may be nearly as large as between types of cobalamin thereby obscuring the real differences between cobalamins. Brand differences appear to be able to account for at least 100x difference in effectiveness.
    2. At what rate are sublingual tablets absorbed? The two brands of methylb12 sublinguals and one brand of adenosylb12 sublinguals tested (5 star best of 11 tested) compared to injections via urine colorimetry and effectiveness appear to be absorbed at the rate of 15% to 25% over the range of 45 minutes to 120 minutes under tongue and/or lip. Amount absorbed is highly influenced by duration in contact with oral tissues. Chewed and swallowed appears to reduce absorption to the approximately 1% of a swallowed oral dose.
    3. How rapidly does light cause deterioration of methylb12 injectable solution at ordinary room light levels? It appears that no more than 10 minutes in a clear 10ml vial, single or cumulative exposure, are needed to break down the mb12 to the extent that it causes acne type lesions as does Hycbl and loses the specific effectiveness of mb12. This effect is duplicated by one minute in a clear syringe of 0.5ml capacity. I am presently drawing up plans that will enable me to put numbers as to lumen/minutes and color temperature or types of light sources to this. This is little enough light exposure that many pharmacies probably exceed it while mixing methylb12 for injection causing high variability in effectiveness of injected mb12 which has been experienced by approximately 100% of those using injectable mb12 with whom I have spoken. This is actually a very serious issue. It serves to completely obscure the very real therapeutic differences between Hycbl, Cycbl and Mb12 and deprives people of the effectiveness of the medication they are paying for. It may even be a factor underlying much research that is done with methylb12. In NO study that I have read has light conditions during preparation or injection (or IV) been mentioned. As I was taught in sales courses years ago dont assume anything because assumptions make an assume and researchers are making HUGE assumptions if they ignore light conditions.
    4. What percentage of people have different responses to methylb12 and adenosylb12? In corresponding with many hundreds of people trying both active b12s the majority of those having a noticeable response to one form of active b12 also have a different noticeable response to the other active b12 despite having saturated the system with the first one and ceasing to have any further reaction to it. Some people only have this differential response at the body level, some only at the CNS/CSF level and some at both.
    5. What percentage of the population has a noticeable rapid response to methylb12/adenosylb12? Of approximately 1000 people apparently healthy people in social situations questioned as to symptoms and observed while taking a sublingual methylb12 and/or adenosylb12 held for 45 minutes or longer, about half had a noticeable immediate effect. Of those having prior recall of symptoms that might suggest b12 deficiency that increases to approximately 75%. This is sufficiently high with no false positives that it would be an effective inexpensive method of (mass) screening for functional b12 deficiencies. It is effective whether the person is taking Cycbl or Hycbl or not. Those just dont make much difference and may even enhance the effectiveness of mb12 response by causing a methylation block or other hypothetical causes.
    6. As research has indicated that people with CFS/FMS have a lower CSF cobalamin level than those without, do these people with CFS/FMS have a different response to CNS/CSF penetrating levels of active cobalamins. Yes. Many of those with these diagnoses have a pronounced effect to the 50mg sublingual or 7.5mg SC injected doses of methylb12 and/or adenosylb12 after body saturation has completed within 2-4 hours of injection or start of sublingual dose (2-3 hours to complete). Most people have no response at all these doses after body saturation even if they had a response initially. Some people have no body response at all and only the high dose CNS/CSF response.


    Richvank said:
    As I've written before, I can't say that this (simplified methylation protocol is the one referenced, ed) is the optimum protocol, and I know that you (Freddd, ed) have a very firm view that it is not. But that is the history of it. I selected it to take advantage of the extensive experience Amy had already had, since I had little experience with treatment, having focused on developing a hypothesis for the pathogenesis and pathophyisiology of CFS. I needed a treatment to test this hypothesis, and that's what I selected at the time.
    As many researchers and physicians have found, treatment with b12 is not as predictable or reliable as those requiring treatment might desire. Because of the belief systems shared by 100% of all my many physicians through the years, my multiple problems were never found, considered or treated. That is an incredibly high degree of institutional blindness. It would be difficult to find something else that 100 physicians of many specialties are all in 100% agreement with and are also 100% wrong. Many others are in the same boat. The belief systems are solidly based on decades of research and treatment experience that are based almost 100% on statistically significant results for a significant percentage of people with Cycbl and /or Hycbl. Unfortunately all that statistical agreement on small matters add up to be 100% wrong on large matters. Its a matter of what questions are asked. Maybe this is a matter of philosophy but it sure does affect health. I am sure that other similar problems are hiding in the statistically correct assumptions that add up to something completely wrong. These wrong assumptions have researchers chasing phantoms for causes. A good example is trying to chase down why the mitochondria are not working correctly in CFS. The simple answer for a sizable percentage of people is lack of adb12 and/or l-carnitine fumarate. This just plain fixes the problem for many persons with CFS/FMS. There may be some more subtle reasons but until this one is eliminated by trial you cant know that. Since nobody researching the matter is trying adb12 and lcarnitine fumarate they must be assuming that it cant be that. Or maybe they dont even know to ask that questions since their knowledge of b12 stops at Hycbl or Cycbl. However it is easily demonstrable for many people that it in fact fixes the problem though additional cofactors that are less obvious may also be needed and relative quantities may vary considerably.

    Methylb12 injections when considered at all are considered too fragile for reliable treatment instead of finding out what the problems are making it unreliable. After all, it deteriorates to Hycbl and that just doesnt produce the effects expected of methylb12. Vitamin brands are dismissed as just vitamins which are not tested for reliability and so nobody actually expects them to do anything.




    ASSUMPTIONS

    1. Cycbl and Hycbl are the only valid forms of b12 for therapeutic use. This is believed by something in excess of 90% of MDs in the USA. The problem is that this is blatantly false. Most MDs are not aware of adb12 and mb12 or if aware that they even exist not aware of how different they are. There is no progression of treatment such as there is for pain, progressing through progressively stronger medications if the lower level substances are not effective.
    2. Cycbl and Hycbl work for everybody for whom b12 can work. Study after study shows ineffectiveness for 20-40% of subjects on the basis being tested over a multi-month period, whether MCV or uMMA or Hcy or serum levels or other measures. While some of this may very well be due to lack of needed cofactors virtually no doctors explore that aspect and provide the needed cofactors so the patients receive ineffective treatment regardless of actual cause. A differential effect can be easily demonstrated by people between mb12 and adb12, with some persons responding to one but not the other. An even larger differential effect can be demonstrated between Cycbl/Hycbl and mb12/adb12. A person given mb12/adb12 for 3 months will demonstrate no effect from Hycbl/Cycbl whereas a person given 3 months of Hycbl/Cycbl will have the usual startup responses from mb12/adb12 apparently undiminished, often even increased, by pretreatment with Hycbl/Cycbl demonstrating that Hycbl/Cycbl do not fill the needs for mb12/adb12. With a population screened by symptom patterns to be likely to have b12 deficiencies, approximately 75% of such population will demonstrate response to mb12 and/or adb12 sublinguals within 2 hours. Most of the rest will demonstrate a response after supplying the needed cofactors. There is no such comparable response to Cycbl or Hycbl which a few may show response to witin hours but most take weeks to months.
    3. If a person doesn't have pernicious anemia (or in some providers' minds, macrocytic anemia) then they can't be b12 deficient. This totally ignores some 295 other symptoms and signs that are far more common than the 1-2% with PA. In the USA the average MCV is now so high that labs no longer give first alerts >92-94 and have moved that up to >100. My MCV was 99.8 for decades and alerted for decades. My doc mentioned on one set of tests that I no longer had a high alertable MCV and therefore must be doing better. However, on checking deeper the lab had moved the alert level from >96 to >100. My MCV was still 99.8. On conversation with the involved major lab they said "If we alerted everybody we get ignored. The average we see now is over 96". Hematological standards haven't changed, just the data the tests are normed on.
    4. Treating to cobalamin test ranges brings good results. This is the justification for ceasing b12 treatment when serum cobalamin reaches 900-100pg/ml. It is also the justification for once a month to once each 3 months injections being adequate because it keeps the minimum serum level above 300pg/ml. Ceasing b12 treatment when serum level reaches an arbitrary level of 900-1100 prevents many things from healing. A study of neuropathy showed that of those responding to methylb12 63% had test results that would have prevented treatment or inclusion in studies with an average serum level of over 700pg/ml to start, with some responsive persons having initial serum levels over 1500pg/ml, "normal" homocysteine and "normal" uMMA. 300pg/ml is a ridiculous low figure for calling successful when people with levels that low may have hundreds of responsive symptoms. However, because once a month injections keeping serum level over 300pg/ml is often sufficient to bring the size of red blood cells below 100 it is considered adequate. For those receiving such "treatment" it is like torture.
    5. Hycbl is considered longer lasting than methylb12 because with methylb12 symptoms start returning after about 3 days. The logical fallacy in that is that methylb12 affects symptoms often within hours that are not touched by Hycbl and it is those that also return most rapidly. Since Hycbl and Cycbl don't affect those symptoms within hours to three days, they can't possibly return after 3 days without hycbl or cycbl since they never were affected in the first place.
    6. Most medical personnel speak of b12 deficiency as being a unitary thing when in fact there are 4 distinct deficiency syndromes and 2 major variants of each one dependent upon folate status. The assumption is that minimal amounts of any form of cobalamin will correct all 4 deficiencies. A careful reading of the literature will reveal a limited awareness of this. The deficiency detected by high uMMA is an adenosylb12 body deficiency; the deficiency detected by high homocystein is a methylb12 body deficiency with possibly a folate or p5p deficiency. The deficiency detected by high Cerebral spinal fluid homocystein is the CNS methylb12 deficiency with or without folate/p5p deficiency and high cerebral spinal fluid MMA detects a adenosylb12 CSF deficiency. The problem is the CSF tests are rarely performed and even "normal" numbers (if there are any) don't mean sufficiency at the body or csf level. Further with low CSF cobalamin levels detected in CFS/FMS/Alzheimer's and hypothesized that there is a problem getting cobalamins into the CSF as ordinary injected and oral doses don't penetrate the CSF sufficiently. Further it needs to be high diffusion gradients of specifically mb12 and adb12, far more than the body alone needs. All of this can be easily and predictably demonstrated. Most people who respond to mb12 also respond to adb12 but differently and even following saturation with mb12. Further some persons demonstrate specific CNS responses to high doses of mb12 and/or adb12, again quite different responses even after saturation with the other form. No dose of Hycbl or Cycbl demonstrates this.
    7. Dose proportionality was assumed to not exist for Hycbl and Cycbl for decades. Mb12 has demonstrated dose proportionality over a much wider range. Because of recent research claiming that 6 mcg was quite sufficient another researcher did a study of dose proportionality with Cycbl and found that it does indeed exist based on saturation percentage of TC2. The tested range was 3 to 100 mcg. Maximum effectiveness was reached in terms of saturating the transport system at between 25 and 50 mcg. With methylb12 actual healing results were used to gauge effectiveness and dose proportionality was demonstrated over the range 120mcg to 1500 mcg daily for peripheral neuropathy and extended to 50,000 mcg daily for CNS healing by Japanese research. While the dose proportionality is not linear and is discontinuous between approximately 2.5mg and > 6.0mg when the CNS healing effects typically begin.

    I understand your selection of a protocol for testing a hypothesis. I just had a different hypothesis to test; that it was possible to recover from decades of FMS/CFS . I was in the position of rapid neurological deterioration and the beginning of cardiac problems and wasnt going to last the next 50 years of working backwards through causality chains until getting at root causes. 20+ years had been ripped out of my life and it was rapidly getting worse. I needed something that would work NOW, not decades from now well after I was dead and my childrens lives ruined. Based on many symptoms it was obvious that methylation was shut down or depleted or something of the sort. So my question was with what substance(s) would that be impossible and what assumptions stand in the way and the answers came up mb12 and methylfolate and for the second question inactive cobalamins and folic acid. The same questions came up for the mitochondria. What makes them work? What assumptions stand in the way of seeing that? Once one sees that the assumption that it cant be missing adb12 because a person is taking Hycbl/Cycbl that assumption MUST be tested otherwise everything else is possibly just spinning the wheels. I read the proceedings of a recent Utah CFS/FMS conference. Its sad to see a researcher chasing down the biochemical details of the mitochondria while assuming that Hycbl is sufficient when a trial with adb12 and l-carnitine fumarate will make the answers to the biochemistry irrelevant for many CFS/FMS sufferers. Now it is likely that some percentage will still have mitochondrial problems after starting those. I found that exercise promoting the formation of MORE mitochondria was absolutely needed to fully recover. At the same time I found that I was now able to rapidly repair and grow muscles. Research questions are only as strong as the weakest assumption used in their basis.

    I work strictly with macro data, not minute biochemical detail. Something has to work at the naked eye healing level to work for me. Correcting one pathway out of hundreds of malfunctioning ones doesnt necessarily heal a person. For me to have a worthwhile life from that point 7 years ago I needed a miracle. The miracle meant finding the flaws in the assumptions of approximately 100 providers who never figured out the problem or treatment. Clearly it wasnt an individuals sole flaw, it was an institutional set of flaws. Collectively they all believed the same incorrect assumptions. That interestingly enough is also a flaw in the democratic process. In a democracy when 51% of the voters make wrong choices because of shared flawed assumptions, the results are 100% wrong choices. When the consensus on standards of care shares flawed assumptions the standards of care are wrong. I had no problem picking out intentionally wrong data, detecting fraud was part of my job.

    On the internet the problem is sifting through the data of millions of primates pounding away on their keyboards (modern version of million monkeys on typewriters). However, when you have a thousand people having the requisite miraculous results, out of millions performing multitudinous trials of their own design, on certain problems and 100% of them having results are having them with mb12 and/or adb12 with additional cofactors at various rankings and not one of them having miraculous results has them based on Hycbl and/or Cycbl the results pretty well speak for themselves. I then found out why even more were not having great results and debugged the process. It isnt perfect. All I have claimed that it does is increase the probability that a person with CFS/FMS and other sets of symptoms will have more beneficial results than with other forms of cobalamin. The active b12 protocol is not complete nor perfected. A lot of the main reasons people were not having success were eliminated between realizing that type, brand and technique all played major roles in success or failure as did cofactors. However type (mb12/adb12 versus Hycbl/Cycbl), brand (only some brands highly effective) and technique (absorption was proportional to time in contact with oral mucosa) eliminated about 99% of the causes of non-response with oral and sublingual forms and tremendously increased response. I find it more than a little curious that such fundamental work towards understanding this was never done by the institutional researchers. Further to find that much of the prescribed injectable methylb12 is so damaged by light as to be useless as it is converted to Hydroxycobalamin via photolytic changes and that nobody has studied that is mind blowing.
     
  6. Freddd

    Freddd Senior Member

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    Cancer cells feed on fructose, study finds

    WASHINGTON Pancreatic tumor cells use fructose to divide and proliferate, U.S. researchers said on Monday in a study that challenges the common wisdom that all sugars are the same.
    Tumor cells fed both glucose and fructose used the two sugars in two different ways, the team at the University of California Los Angeles found.
    They said their finding, published in the journal Cancer Research, may help explain other studies that have linked fructose intake with pancreatic cancer, one of the deadliest cancer types.
    "These findings show that cancer cells can readily metabolize fructose to increase proliferation," Dr. Anthony Heaney of UCLA's Jonsson Cancer Center and colleagues wrote.
    http://www.msnbc.msn.com/id/38528161/ns/health-cancer/
     
  7. mtnwoman

    mtnwoman

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    Hello Fredd,

    Are you familiar with Leesburg Pharmacy in VA (a compounding pharmacy)? I was thinking of getting some meB12 injectables from them (25mg/cc,,,#10ml for $80).
    I believe you mentioned University Pharmacy in SLC? Are they conscientious re light and meB12 preparation?
    Also, if you have time, can you comment on my post #1621 ---
    many thanks,
    p.s. do you have a website yet where the core info is summarized (i know about wrongdiagnosis).
     
  8. h4house

    h4house

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    South East England
    Hi Freddd,


    Thank you for your reply. Have ordered the necessary supplements in the stated brands. Looking forward to starting them, but have a couple of concerns. I find the pyschological aspects of CFS very disturbing. In your experience, has following this protocol helped the anxiety/panic and depression side of things? If it does, would I be right in thinking they may get worse before improving, as the body starts to adjust?


    Many thanks.
     
  9. shannah

    shannah Senior Member

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    Hi Fredd,

    I'm not done reading all the information yet but I have a similar question as h4house.

    Do people experience the same sort of detox reactions on this protocol as in the Simplified MCB Protocol? I tried this one and couldn't bear through with the initial reactions but I was less functional then than I am now I think.

    So do people tend to get worse before experiencing positive benefits? Do you start out with small amounts and increase?

    Please forgive me if you've answered this question a thousand times before.

    Thanks
     
  10. Freddd

    Freddd Senior Member

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    Hi Mtnwoman,

    University pharmacy is light aware as far as I know. I certainly told them about all of my reactions. I was not aware of of PURE b-complex though it sounds good. I like the content of Metafolin. University pharmacy told me they could not guarantee more than 20mg/ml because some batches of crystals just don't disolve that well and was leaving a lot of expensive b12 in the filter. They have every batch tested by an outside lab for content and sterility. They showed me the report of about 20mg/ml despite starting with more, so they just changed to what they could deliver reliably without wastage and I adjust the injection volume, going form 0.3ml to 0.5ml syringes; no big deal.
     
  11. airjacobs

    airjacobs

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    If you are desirous of discussing such agenda, you could start a thread in the Community Lounge section, since it only concentrates on medical aspects. I, for one, would be interested in having so. At least some, I think, would be doing so as well.
     
  12. Freddd

    Freddd Senior Member

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    Hi Airjacobs,

    I have absolutely no idea what "this" you are speaking about. However, if you want to find out about using active b12 protocol, which also includes all the side issues, cofactors, difficulties and so forth, which gets us into everything nutritional and all the ways the body can respond for healing and health, this is the place. Strictly speaking we are not strict here and don't enforce intellectual bondage and discipline.
     
  13. Freddd

    Freddd Senior Member

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    Hi Shanna,

    Do people experience the same sort of detox reactions on this protocol as in the Simplified MCB Protocol?

    If the simplified MCB protocol is the one Rich talks about with the Hycbl, then the results are quite different.

    With the active b12s most of the startup responses are not "detox" reactions for starters. While some people may have some detox reaction, there are a whole lot of startup responses that have nothing at all to do with that. When starting the adb12 for instance, 100% of the startup response is the effects of the mitochondria starting to function again and generating ATP. That is just about the only thing that adb12 does. The more severe the fatigue and lack of energy, usually the more intense this startup is. Most people have only a few days of adb12 specific startup which is clearly evidenced if the adb12 is started after the mb12. Adb12 does not supply a methyl group and if the only one given would probably deplete methyl just as Hycbl and Cycbl do.

    With the hycbl many symptoms continue to worsen for a year or more. Virtually all of the symptoms are called "detox" by many people but they are also b12 deficiency symptoms that worsen becasue Hycbl is NOT mb12 and only helps about 1/3 of the symtpoms that mb12 helps. Those symptoms that worsen indefinitely with hycbl are usually gone in months with mb12. WHen people are taking glutathione or precursors and have "glutathione detox reaction" (pretty common), my experience was that every symptoms listed as "glutathione detox reaction" were actually a severe induced methylfolate deficiency and mb12/adb12 deficiencies and start going away withon hours of taking large enough doses of Metafolin, mb12 and adb12. I even had mb12 and adb12 startup responses all over again though of short duration as I inject mb12 and went back to saturation within days. I developed all these deficiency symptoms despite my continued use of mb12 injections, adb12 and Metafolin during the glutathione (precursor) trial. I had to increase the dose by 4-6x to get the indiced deficiencies back under control. Others have had the same effect with glutathione and how to repair the socalled "glutathione detox reaction". It's very obvious that "detox" is a convienient term for certain not understood reactions that have nothing to do with actual detox.

    The major startup responses usually come from mb12. The first thing it does, in minutes to hours, is change how the nervous system works. It almost immeditately starts resporing lost functionality. This is perceived as unpleasant mostly as all the many neurological (all aspects of neurological system, peripheral and central) symptoms, many of which people were unaware of as they crept up slowly over 20 years, become very apparant. Nerves that had become slowly pretty numb spring painfully back to life and muscles and things start reacting. At the same time cell division picks up as there is now enough mb12 for that to happen and all sorts of tissues start healing. My burning tongue, burning muscles and burning bladder stopped burning in the first 10 days.

    While some people attribute these things to "detox" there is very little evidence that is at all common. There are a set of common startup responses that most people have some or all of. So either EVERYBODY with visible or occult b12 deficiencies of a certain severity has "detox" symptoms or almost nobody has them. Those that become concerned about startup responses and call them "detox" and stop the mb12 are just as sick a year later. Those that put up with the startup responses and continue titrating have about a 75% reduction of affected symptoms after 1 year, assuming they add all the needed cofactors. After a year I was quite ready to start rehabilitation which is an entirely different thing. A body inactive for 17 years can become quite debilitated. It took me a year to work up from being able to walk 600 feet to 5-6 miles. At first I increased the distance I walked each day by one house lot along the street. An increase of 100 feet per day for 50 days is a mile.

    So do people tend to get worse before experiencing positive benefits? Do you start out with small amounts and increase?

    My lifelong depression started lifting after about 15 minutes after that first mb12 went under my tongue (by the Rolling Stones?). After 1 hour I had enough energy to walk up a flight of stairs normally for the first time in 16 years. However, all my symptoms were perceived far more intensely in exquisite detail. However, as that was also accompanied by the start of brainfog lifting and seemed connected, it wasn't "bad". Some aspects were unpleasant. Remember though, many of the things are just changes in perception, an increase of intensity becasue the nerves are suddenly working better, well enough to perceive all the damage. The things that exploded into awareness most were also the first things to heal.

    I started with a 1mg sublingual which delivers about 150-250mcg to serum in 45-120 minutes. Over the next 4 months I titrated up to 20-25mg sublingual/day (delivering about 4-5mg to serum) taken in divided doses throughout the day. After 3-4 months of startup it fell off in 1 week as I just took more and more mb12 saturating the system. The more I took the less effect each tablet had until they ceased to be any reaction at all and everything stabilized. From that point on symntoms got progressively better and milder. After 9-12 months I was able to discontinue or reduce most of my medications. The neurological pain was 99% gone. My allergies and asthma was gone. The burning bladder was gone. The IBS was reduced and as soons as I got rid of milk went away completely. Before the mb12 I was sensitive to everything and milk was no different. After mb12 it was the only thing remaining. The constant nausea and vomitting was gone. The waking up at night with acid shooting up my thoat was entirely gone. I had exercise tolerance back. My muslces started groing with exercise. It took a few more cofactors to finish the job but looking at my muscles now you would never know that they were mere shadows of themselves 7 years ago.
     
  14. shannah

    shannah Senior Member

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    Many thanks Fredd.

    My retention & comprehension is very impaired currently (lots of brain lesions) but I'll keep reading at the wrongdiagnosis site. I'm assuming this will give me everything I need to know to get started. Is that right?

    Wonderful to hear of your progress.
     
  15. DrD

    DrD

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    Thorne Bcomplex #12 is very good as well. The B6, B12 active forms and both active forms of folic (folinic and 5-MTHF). I have 2 a day.
     
  16. abc123

    abc123

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    NT Factor...?

    Fredd, have you ever tried NT Factor or seen it benefit others? It's supposed to help energy by improving mitochondrial membranes; I'm wondering if using it in conjunction with adb12 would help mito function and speed up healing in this area.

    I'm considering trying it again, now that I'm taking adb12. When I tried NT Factor previously it made the brain fog and fatigue much worse, which I couldn't figure out...
     
  17. xchocoholic

    xchocoholic Senior Member

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    Florida
    Hi Fred,

    I'm trying to help a friend of mine get started with this protocal and noticed that you didn't mention the Enzymatic B12 Infusion in either thread, PR and wrongdiagnosis, as a preferred source of MB12. This is the one that I've been using and I'm almost out so if it's not as good as the others, I may as well change it now too. I can't really say that I noticed anything from this MB12 but I'm not sure what to look for either. I did find it referenced here though ...

    http://www.forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story/page3&highlight=infusion

    Thanks again for providing this info ...

    I'm still doing really well with this protocal. KOW ... Again though, and not to discourage anyone from trying this, but I started a few things (DHEA, pregnenolone, testosterone, homemade probiotic drinks, including Kombucha) before, during and after I started this protocal, so it's going to be hard to tell what's doing what for me.

    I've been busy with company for a few weeks now and I haven't had significant PEM yet. In fact, I've been busy most of the time for weeks. My cognitive capabilities are much better now too. KOW ... All I've noticed was a little fatigue and the need to take a couple of short naps every few days is all. Where before I was a complete zombie and slept all day for the 1st day after exerting myself. I even got glutenned a few times but recovered quickly.

    Also, I'm having to tell myself to lay down and rest when previously I was struggling to stand up. So something is helping me with my OI too. My arms aren't losing strength when I'm trying to carry something, fold clothes, etc either. I still get the feeling like my arms are going to fail but it goes away as quickly as it came on as if my body recognizes that the feeling isn't important anymore. Not sure what that's all about but it's better than having my arms go out on me. I still can't go up stairs without getting seriously winded though.

    Because the feeling of weakness in my arms stopped shortly after taking my first ADB12, I'd credit the ADB12 for this. No longer feeling the need to lay down, I'd credit the DHEA for since I'd noticed this the first day I took it. Kombucha has caffeine in it too though so maybe this is helping my adrenal fatigue. I kinda doubt it since caffeine never worked this well for me before. Of course, since our bodies depend on a combo of nutrients to function, there's no way of telling what's what ... X

    PS. I hope you don't mind that I put a link to this info up at http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=4807 ... just let me know if it is ... tc ... x
     
  18. retireddpm

    retireddpm

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    b12 deficiency need some input here

    have b12 deficiency and trying sublingual b12 as recommended by Freddd. Added methyl folate and it seemed to get worse with lower or larger doses. I read that b12 and folate can increase histamine especially folate is not recommended for elevated histamine people. I guess this can be a form of undermethylation with the high histamine. I did have some paresthesias around the body with the b12 deficiency. I see many with cfs use hydroxy b12. Freddd seems to think that the absorption of hydroxy like cyano is limited to 10 mcg a day because of conversion needed and a keyhole effect. Has anyone with bad reaction to methyl b12 been able to correct b12 deficiency and neurologic symptoms with the hydroxy sublingual. right now the methyl folate is a killer either due to increased histamine or too many methyl groups. Anyone have any experience with glycine, same, or inositol to help with excessive histamine.
    I am confused since I need to correct for b12 deficiency but do not want histamine side effects

    Thanks very much
     
  19. retireddpm

    retireddpm

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    I think I meant methionine not glycine to reduce histamine
     
  20. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon

    Hi Freddd,

    I want to start out by admitting that I have not read all 1,636 posts on this thread. I've read a good many, but undoubtedly I'm missing some key points.

    That being said, your comments here are not consistent with my own experiences at all.

    I started out on my detox journey by taking a "sprinkle" of FolaPro (5-MTHF) and 1000 mg of sublingual hydroxy B12 per day. This was back when I was living in my moldy house. This gave me an insane detox reaction that made me sick enough to be listed in the "Adverse Effects" section of Rich's revised paper.

    A while after I moved out of my moldy house, I was able to take Rich's recommended doses of the supplements with substantial detox that was at a level that I considered to be safe.

    I continued taking 1/2 pill of FolaPro (the Actifolate seemed to be unimportant or maybe counterproductive) and increasing doses of sublingual hydroxy and then (very occasionally) 1000-5000 mg sublingual methyl B12.

    For 2 1/2 years after moving out of my moldy house, I detoxed continually. About a year and a half of this was in the most pristine Godforsaken deserts that I could find. Five months of this was in a tent. The rest was in a super mold contamination free RV, sleeping in a tent when feasible.

    The intensity at which my system detoxed was dependent on a) the extent to which my environment was pristine with regard to toxic mold/biotoxins and b) the amount of cholestyramine and/or detox-promoting supplements I was taking. If I was taking a lot of stuff that promoted detox and was in a clear environment, I would go into a state that Erik Johnson (my mold mentor) describes as "zonked-out immobilized semi-comatose groggified." Lots of very icky (to put it mildly) stuff would come out of my body through all channels (including sweat, breath, saliva and - occasionally - vomiting as well as the usual routes).

    As a result of a variety of things (including Valcyte and neural therapy as well as extreme mold avoidance and detox) my system got strong enough for me to try pushing detox even further. By that point most of my ME/CFS symptoms were gone as long as I was clear of mold/biotoxin exposures, and my reactivity to those toxins had gone down considerably.

    I thus cautiously started on high-dose methyl B12 injections. I started with 1 mg and then experimented with working up.

    Now I'm doing 10 mg injections as often as I can tolerate them, which is a couple of times a week. The toxins have been POURING out of my body as a result. For a day or two after each injection, I go into that "zonked-out" state. The intensity of my immobilization and "groggification" is at least as strong as it's been at any time during this journey.

    If I don't take a lot of csm or some other binder, everything in my intestines moves through as quickly as possible (apparently a defensive move to keep the toxins from re-absorbed), which is precisely what happened at the very beginning when I tried Rich's supplements. (This was just before my colon got blocked up entirely, which is the adverse event reported in Rich's paper.)

    In summary, this whole experience is precisely what happened to me on Rich's protocol.

    What I'm passing through is noticeably and (I think) undeniably toxic. It only was after I started daily coffee enemas that I stopped feeling so toxic (like a continual very bad hangover even when not wholly comatose).

    I've now been doing this for about six weeks. The reactions that I'm getting to each methyl B12 shot have become less intense by the week, and my remaining ME/CFS symptoms (not that many) have decreased. So I hope that I'm almost at the end of this road.

    (I don't think I'll ever be able to be around much toxic mold or other biotoxins, but it's getting to the point where my reactivity is not so severe to prevent me from living a normal life.)

    I thus think that what you're saying is not true for me. And since I am as classic of a Canadian Criteria ME/CFS patient as they come, I'm not sure that what you're saying would be true for a lot of other people here either.

    I am especially concerned about your comments that people should be able to get well from ME/CFS without detoxing.

    It's not my impression that this is true, and it's not been what I've seen in other people with classic ME/CFS who have gotten well.

    This particularly concerns me because of my and others' experiences that our bodies only release toxins when we are in an environment that is only moderately clear of toxic mold. It is my belief that insofar as the system is in a bad environment, it clings to toxins for dear life, so that the combined burden of newly inhaled and released toxins isn't overwhelming.

    I think that if people with classic ME/CFS aren't experiencing detox symptoms, they should suspect that they are in a bad environment. Insofar as they don't check out that clue, they may not only fail to get better but may continue to decline as a result of being in the dangerous environment.

    Mike Dessin, who has recovered from near-death classic documented ME/CFS as a result of mold avoidance, neural therapy/detox, and various other treatments, had an experience with a methyl B12 IV when he was living in a very bad environment. This knocked his moderate ME/CFS down to being very severe.

    Mike and I agree that while methyl B12 can be a very good thing for people who are in good environments and are ready for it, it (like all other detox treatments) can be very dangerous for people who are in bad environments.

    Suggesting that if people get a detox reaction and then get extremely ill from taking a lot of methyl B12 (as happened to Mike) they take even MORE methyl B12 seems to me a risky business. And while I don't disapprove of people taking risks (I've taken lots myself along the way), maximizing the likelihood that those risks will not result in precipitous slides into greater disability and then death (which is where Mike eventually found himself) seem to me to be prudent.

    Thus, I'd like to encourage people to consider the role of toxic mold in their environments before following your suggestions.

    I can't speak to your own experience. Maybe your condition was not classic ME/CFS. Maybe you were in a good environment when you pursued this (though I still find it perplexing that you didn't experience any classic detox symptoms).

    But I can speak to the experiences of myself and the only half-dozen people who I know for sure had classic severe ME/CFS who have recovered from this illness (most of whom I have visited). Their experiences have been so similar to mine that I do not believe it can be a fluke.

    Perhaps you will tell me that Adb12 is the magic bullet that will change everything. I'm willing to try it, if someone gives me instructions on how to get it.

    It had better be soon though, before the intense detox that I'm experiencing now comes to an end.

    Thanks much for discussing your own recovery on the board. We need all the info we can get, and I'm really happy for you.

    Best, Lisa
     

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