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Glutathione & Precursors - Detox or Induced Methylb12 and Methylfolate Deficiencies?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Sep 12, 2009.

  1. dannybex

    dannybex Senior Member

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    Hi Freddd,

    Please note that I was bringing up the issue of the Metafolin, not methyl-b12.

    You're correct that many of these symptoms can be due to other things, but mine only increased over the last year or so, after being prescribed a Thorne b-complex supplement that in hindsight I realized contained 2 'active' forms of folate and a few months later, Folacal.

    I've also had 2 blood tests done during the last 2 years -- both showed elevated (but 'normal') levels of mercury and arsenic. I did the Doctor's Data Hair Elements Test, which showed several slightly elevated levels of several heavy metals, but also highly skewed minerals, or as Andrew Cutler describes it, "deranged mineral transport", which he says is caused (to this degree anyway) by mercury toxicity.

    I also had the methylation panel done in August, and was found to have the partial methylation cycle block. (The NutrEval test confirmed this, and have since also found out from that, that I have a sulfation problem. I may have other detox pathway problems as well.)

    So anyway, at my next appointment in October, I was prescribed several different forms of active folates, along with adenob12 and hydroxb12 drops. Within a week or so my anxiety, twitching, cramping, tingling increased DRAMATICALLY. I was suicidal on at least six ocassions during a 2 month period. I can't imagine going through that again.

    Rich has commented that he thought the extreme reaction I had may have been due to probiotics I was taking were "remethylating" -- I think that was his word -- the folates, making my reactions even worse. My doctor's ART testing showed I was 'dumping metals' as a result of these methylation supplements.

    In addition to the symptoms mentioned above, I also developed a symptom I have never had -- ever -- until about June of this past year, and that is 'skin shedding' or desquamation. My skin is very dry and flakes off. When I'm able to take a shower, my skin peels off when I dry off -- very scary -- I don't recommend it. It is listed as one of the 'common' symptoms of mercury toxicity:

    "Common symptoms of mercury poisoning include peripheral neuropathy (presenting as paresthesia or itching, burning or pain), skin discoloration (pink cheeks, fingertips and toes), swelling, and desquamation (shedding of skin)."

    http://en.wikipedia.org/wiki/Mercury_poisoning

    And halfway down this page...

    http://www.noamalgam.com/

    ...you'll find a section entitled "What Mercury Poisoning Does to You". That description fits me to a 'T'.

    Another unusual symptom noted on that page is that 'teeth feel loose and can be wiggled very slightly'. I have had this symptom off and on since a year or so after having my amalgams replaced back in 1988 (without proper chelation). Dentists have had no explanation for this, because my pockets are in good shape, but still my teeth can wiggle and my bite can shift, and this odd symptom has increased with the others, since the overprescription of the methylation supplements back in October-November.

    Like many on this forum, my potassium is high in relation to sodium on the hair mineral test. Water, with a little sea salt added, helps this, albeit temporarily. It may be, as described above, that this is a result of mercury causing 'deranged mineral transport'. My calcium and magnesium balance is also messed up. I've almost never been able to take calcium or magnesium supplements -- and I've tried dozens of combinations over the past 13 years -- without increasing muscle twitching or sometimes cramping problems, again, suggesting that mercury has been skewing my mineral balances for years.

    The cramping I've experienced since Oct-Nov is in my upper abdominal area -- just below my ribcage, but it moves around. I never had that before either, but fortunately it has subsided but happens maybe 2-3 times a week, especially as anxiety or tension increases.

    Anyway, that's my story to date. I don't know what the answer is, just trying to figure it out. Cutler and those who have followed his chelation protocol, suggest that proper chelation of mercury will correct the methylation and other detox pathway problems, and also improve digestive intolerances and problems (like candida/fungal infections). Whether or not that is true, I don't know.

    Correct me if I'm wrong, but it seems to me like you came from a place of (near) paralysis, which is the opposite of many of us who are 'wired but tired', myself being 'extra wired'.

    It's also interesting that you mention your father was a dentist and you were exposed to a lot of mercury when you were younger. Could it be that your symptoms are due to hidden mercury toxicity?

    Best regards,

    Dan
  2. dannybex

    dannybex Senior Member

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    Thanks Rich -- that's the same reason why I posted here as well. I'm concerned that people with undiagnosed, "hidden" mercury problems, may become a lot worse, as I did, and certainly wouldn't wish that on anyone.

    I agree -- this issue is complex, and hasn't been resolved. Maybe it never will, without more tests that might come available. And whether the hair elements test is an accurate way to determine hidden mercury problems...I don't know...but many people have sworn it, and the Cutler protocol, has saved their lives. They had to chelate for years in many if not most cases, but they recovered.

    As you know, there are many people who have reacted negatively to even small amounts of the methylation supplements...that's why I know you recommend people start with very small doses, which I will hopefully be able to do soon. I did start a coenzymate b-complex from Source Naturals just yesterday. All the b's are in their coenzyme forms, except for FOLATE, which is odd, but helpful for me, at least right now. The b12 is the adenob12 form. I've continued to lose muscle, now even in my hands(!), (the skin just sags), and I seem to be more 'bloodless', so I'm sure not taking any b-complex supplements in the past 2 months hasn't been helpful for making new blood cells or metabolizing protein, among many other functions...

    ???

    I'm also taking selenium with vitamin e, as mentioned in the study on this site:

    http://www.nutraingredients.com/Research/Vitamin-E-and-selenium-could-reduce-mercury-toxicity

    Also taking SAM-e, 400mgs twice a day, and l-taurine, which has been shown to be beneficial (in rats anyway):

    http://www.ncbi.nlm.nih.gov/pubmed/18405108

    Thanks for the studies Rich. As mentioned in my original post, Dr. Cutler doesn't think that methylb12 methylates mercury in humans to any reasonable degree and cause problems, but I don't understand it. I could post a link to his comments if you like, or backchannel them to you...

    Best regards,

    Dan






    J Environ Sci Health C Environ Carcinog Ecotoxicol Rev. 2009 Oct;27(4):212-25.
    Reproductive, developmental, and neurobehavioral effects of methylmercury in fishes.

    Weis JS.

    Department of Biological Sciences, Rutgers University, Newark, New Jersey, USA. jweis@andromeda.rutgers.edu
    Abstract

    In the decades since the Minamata tragedy in Japan, there has been a considerable body of research performed on effects of methylmercury in fishes. The studies have revealed that some of the most sensitive responses seen in fishes are reminiscent of the symptoms experienced by the Minamata victims. This article reviews the literature, with a focus on mercury's effects on fish reproduction (hormone levels, gametogenesis, fertilization success), embryonic development (morphological abnormalities, rate), the development of behavior, and neurobehavioral effects in adults. Both experimental exposures and epidemiological approaches are included. There have been many studies demonstrating delayed effects of mercury exposure in that exposures during one life history stage can produce effects much later during different life history stages. For example, exposure of maturing gametes can result in abnormal embryos, even though the embryos were not themselves exposed to the toxicant. Exposures during sensitive embryonic periods can produce long-lasting effects that can be seen in adult stages. The existence of these manifold delayed effects renders the practice of short-term toxicity testing particularly unhelpful for understanding the effects of this (and other) toxicants.

    PMID: 19953396 [PubMed - indexed for MEDLINE]



    Toxicology. 2010 Nov 28;278(1):112-23. Epub 2010 Jun 16.
    Dietary selenium's protective effects against methylmercury toxicity.

    Ralston NV, Raymond LJ.

    Energy & Environmental Research Center, University of North Dakota, 15 North 23rd Street, Grand Forks, ND 58202, USA. nralston@undeerc.org
    Abstract

    Dietary selenium (Se) status is inversely related to vulnerability to methylmercury (MeHg) toxicity. Mercury exposures that are uniformly neurotoxic and lethal among animals fed low dietary Se are far less serious among those with normal Se intakes and are without observable consequences in those fed Se-enriched diets. Although these effects have been known since 1967, they have only lately become well understood. Recent studies have shown that Se-enriched diets not only prevent MeHg toxicity, but can also rapidly reverse some of its most severe symptoms. It is now understood that MeHg is a highly specific, irreversible inhibitor of Se-dependent enzymes (selenoenzymes). Selenoenzymes are required to prevent and reverse oxidative damage throughout the body, particularly in the brain and neuroendocrine tissues. Inhibition of selenoenzyme activities in these vulnerable tissues appears to be the proximal cause of the pathological effects known to accompany MeHg toxicity. Because Hg's binding affinities for Se are up to a million times higher than for sulfur, its second-best binding partner, MeHg inexorably sequesters Se, directly impairing selenoenzyme activities and their synthesis. This may explain why studies of maternal populations exposed to foods that contain Hg in molar excess of Se, such as shark or pilot whale meats, have found adverse child outcomes, but studies of populations exposed to MeHg by eating Se-rich ocean fish observe improved child IQs instead of harm. However, since the Se contents of freshwater fish are dependent on local soil Se status, fish with high MeHg from regions with poor Se availability may be cause for concern. Further studies of these relationships are needed to assist regulatory agencies in protecting and improving child health.
    Copyright 2010 Elsevier Ireland Ltd. All rights reserved.

    PMID: 20561558 [PubMed - indexed for MEDLINE][/QUOTE]
  3. Freddd

    Freddd Senior Member

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    Hi Dan,

    Correct me if I'm wrong, but it seems to me like you came from a place of (near) paralysis, which is the opposite of many of us who are 'wired but tired', myself being 'extra wired'.

    Thank-you, you are the first person I have talked to that has described this 'wired but tired' making that distinction. I was one of those with no energy at all, mental or physical. I had multiple sleep disorders and took Provigil which usually kept me from going face down in dinner. I have no idea what might cause wbt reaction.

    There is a whole list of items that affected my physical and mental energy, separately; mb12, adb12, SAM-e, L-carnitine fumarate, Metafolin, Zinc, D-Ribose (noticeable but not significant difference).

    Rich has commented that he thought the extreme reaction I had may have been due to probiotics I was taking were "remethylating" -- I think that was his word -- the folates, making my reactions even worse. My doctor's ART testing showed I was 'dumping metals' as a result of these methylation supplements.

    I understand how messed up mineral balance can cause all sorts of things. That was something else the glutathione did to me, mess up the mineral balance and muscle spasms.

    I went and read your links. As I had previously read mercury symptoms overlap mb12/adb12/mfolate deficiencies better than 80%. If mercury can be methylated by mb12 then this would disable the b12 and since typical total annual consumption of b12 is 1-3mg, and 7mg of mb12 can be destroyed by 1mg of mercury a mercury can do a lot of damage by starving the body of mb12 for years and years.

    The cramping I've experienced since Oct-Nov is in my upper abdominal area -- just below my ribcage, but it moves around.

    On sides? front? back?

    It's also interesting that you mention your father was a dentist and you were exposed to a lot of mercury when you were younger. Could it be that your symptoms are due to hidden mercury toxicity?

    It would be very hard to say. I don't have any symptoms that are not accounted for my a car wreck or prolonged b12 neurological damage called sub-acute combined degeneration.

    http://www.merckmanuals.com/home/sec06/ch093/ch093i.html
    The disorder begins with a general feeling of weakness. Tingling, a pins-and-needles sensation, and numbness are felt in both hands and feet. These sensations tend to be constant and to gradually worsen. People may not be able to feel vibrations and may lose the sense of where their limbs are (position sense). The limbs feel stiff, movements become clumsy, and walking may become difficult. Reflexes may be decreased, increased, or absent. Vision may be reduced.
    People who have this disorder may become irritable, apathetic, drowsy, suspicious, and confused. Their emotions may change rapidly and unpredictably. Rarely, dementia develops.

    And all this happened without ever being diagnosed with b12 deficiency.

    I am recovered from all my symptoms except some of those of SACD and from a car wreck. So I can't really say that I have a lot of current symptoms, about 20 currently and all accounted for.

    Now whether or not the mercury contributed to the severity of the b12 deficiency, because even a very small nontoxic amount of mercury could disable a lot of mb12, and my symptoms of my first 3 decades were primarily folate and methylb12 deficiency symptoms. They took a sudden trun for the worse and then 7 years later exploded in number, basically about doubling in a few months with at least half of them appearing over night when I had some mysterious disease that was going around. My wife had it for 6 months and then she got better. I didn't get better for 16 years until I tried methylb12 and then everything suddenly changed. And again 9 months later with adb12.

    I don't think I had any symptoms pointing directly at mercury, and if I did have mercury I believe that the doses of mb12 I have been taking have bypassed the mercury block and helped remove it from my body,the serum halflife being 71 days after methylation. In almost 8 years I have gone through 38-40 half life periods likely clearing the mercury from my body if they interact. I think that with my history I was likely to have a mercury load if anybody was. I have two amalgams left in my mouth. Nothing ever changed by replacing the fillings as they reached the end of their lifetimes.
  4. richvank

    richvank Senior Member

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    Hi, Freddd.

    I want to respond to this statement in your earlier post above:

    "We know from much research that 33% of persons have zero response on the measures taken, to hycbl and/or cycbl and the rest often have very minimal response both as to range of symptoms affected and degree of affect."

    If you are basing this statement on the clinical study that Dr. Nathan and I carried out using the so-called Simplified Treatment Approach, which incorporates hydroxocobalamin as the B12 form, I need to say that I don't think it's valid to reach this conclusion from the available data. It's true that about a third of the women in our clinical study did not report significant improvement on this treatment regimen. However, there are a number of possible reasons for this, in addition to the form of B12 used. For example, the comorbidity with Lyme disease and/or its coinfections, mold illness, entrenched viral infections, high body burdens of toxins blocking enzyme function in the methylation cycle or related pathways, lack of sufficient amino acids, such as methionine, to feed this part of the metabolism, and/or lack of cofactor vitamins and/or minerals for the enzymes in this part of the metabolism. These other possibilities would have to be ruled out in order to reach the conclusion that the use of hydroxocobalamin as the B12 form was responsible for the lack of significant improvement in these women.

    I don't think that the results of our clinical study can be validly used to support an argument that one-third of the people are not able to make effective use of hydroxocobalamin. I agree that some portion of the population is not able to use hydroxocobalamin, but I suspect that it is a much lower proportion than one-third.

    Best regards,

    Rich
  5. Freddd

    Freddd Senior Member

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    Hi Rich,

    Actually I was basing it on the combined results of a multitude of studies, much simpler ones, usually looking for a very narrow response, such as decrease in MCV or Hcy or uMMA or quite a variety of other specific symptoms or biochemical changes, or on equivalence of oral and injectable forms, on both hydroxycbl and cyanocbl. That is part of the problem of taking a narrow view, it limits the possibility to very specific and small ranges of symptoms. The range in most every study for non-responsiveness on the specific measure(s) being used being 20-40% non-response. So some of the more recent are studies trying to affect neurological diseases with daily oral doses or occasional injections of cyanocbl or hydroxycbl and often with folic acid and b6 to cover all the bases on the Hcy. In this situation of deficiencies we are discussing comorbidity is the rule rather than the exception. In so many cases I have seen removal of the confounding b12 deficiency symptoms has made diagnosis of comorbidities easier.

    The composite non-response rate including body based and CNS based study signs and symptoms all come up with that same 20-40% range, or more in some cases, probably for at least a dozen different reasons and usually more than one.

    The Japanese high dose methylb12 studies are all very small and look more like pilot studies to me and are not large enough for any statistical analysis, but they do show patterns. Right now, taken in the composite, they appear to be in the stage of trying to refine the dose size and dose form that is most effective for CSF/CNS cobalamin deficiency related diseases. What they have basically found is that while there is often substantial functional improvement, it lasts as long as the high dose study and then the people revert fairly rapidly. Most of the study periods are short, on the order of months. Others using methytlb12 for treatment have said that it takes 5 years of continuous treatment to retain the changes made. I have found that each cycle of neurological healing appears to last about 9 months. I have had additional cycles started by each of a number of cofactors; adb12, Metafolin, l-carnitine fumarate, 56mg/day of zinc instead of 15, and things like that. None of my early healing symptoms, basically the CFS/FMS symptoms plus a lot of the neurological, came back with glutathione. The things that returned in force were the damaged not yet fully healed areas and selected functional areas having to do with folate very quickly and b12 much more slowly. More and more symptoms were being added over the 6 months until I tried 4800mcg of Metafolin.

    It might be interesting to reanalyze the data from "the clinical study that Dr. Nathan and I carried out using the so-called Simplified Treatment Approach, which incorporates hydroxocobalamin as the B12 form",from the point of view of whether the symptoms not affected were more like to be CSF/CNS-adb12, CSF/CNS-mb12, body-mb12 or body-adb12 or folate. or whatever combinations. That might be very informative.

    I approached things from a different point of view. My analysis was several fold; why the abject failure of the system to identify people that will respond to b12. Why the abject failure of the system to include 200 additional b12 responsive symptoms as part of recognizing b12 deficiencies, functional or "absolute". Why the abject failure of the system to treat adequately people with these deficiencies such as the tendency to call them names and blame the patient with "Its All In Your Head" in one form or another and why the abject failure of the system to provide a "stepped" therapy approach as pain is approached, to step people up the the highly active forms of b12 and folate when the first one doesn't work.

    I think that there is a large enough body of work now showing the linkage between various diseases, including CFS/FMS and CSF/CNS deficiencies of cobalamin. adb12 deficiency indicated in some cases by high MMA in the CSF, mb12 deficiency in other cases indicated by high Hcy and both in some cases as indicated by both MMA and HCY. Then the Japanese research indicating that there is a "threshold" dose of mb12 needed to get the mb12 into the CSF/CNS to affect the symptoms, which it does rapidly with healing taking longer than any of the studies have lasted so far. Any researcher using normal oral doses of ANY form of cobalamin are going to fail in having results for CSF/CNS low cobalamin diseases becasue it fails to enter the CSF via diffusion because of lack of a steep gradient. As you mention because of the equilibrium situation with aquacobalamin and the charged nature, it would have an even more difficult time penetrating the BBB into CSF/CNS than mb12/adb12. That would tend to predict that even for those with body symptoms of cobalamin deficiency which respond to hydroxycbl there would remain the CNS symptoms relatively untouched for those who have to get their cobalamin by diffusion through the BBB.

    Further a study of reversal of diabetic neuropathy via intrathecal injection of 5mg of mb12 indicates that the rate of removal of cobalamin from the CSF is highly variable, apparently independently of transport method into the CSF, and ranged from less than 3 month to more than a year at which time improvements faded away.

    I'm willing to supply you a first approximation list of symptoms differentiated by which respond to Metafolin, CNS/CSF-adb12, CNS/CSF-mb12, body-adb12 and body-mb12 in Excel format. I would be interested in seeing how the responsive and non-responsive symptoms from your study shape up on this, whether there are patterns to this reflected in this list. There are a few other supplements thrown in too in the secondary positions of response. It isn't by any means finished and I have to get it a little more complete before sending it but I could have it in a week or two. I have not read your study so whatever this would predict is without that information and it is not sculpted to produce results with your information which may not have been published with the needed detail in any case.

    I offer this to you for the increase of both of our understandings.
  6. dannybex

    dannybex Senior Member

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    Thank you Freddd. I think it's an incredibly important distinction to make (I know, pass the humble pie Dan). :)

    But it could very well help to explain why at least some of the people who try the folates and b12s get a lot worse. We're all different, and all have so many different factors that play into our illness, that 'one' protocol, no matter who's it is, can't be expected to have the same results.

    Well, my serum b12 was measured twice in the last 2-3 years, and was high both times. I understand that it can be high, and still be low in the cerebral spinal fluid, but if I recollect correctly, Rich seemed to think in my case it was the low folates that were creating a b12 'trap'. ???

    Thanks Freddd for filling in the blanks for me. I'm sure this is probably the 999th time you've retold your story, so I appreciate you retelling it again so I didn't have to search for it. That is interesting that you suggest that the mb12 'bypassed' the 'mercury block and helped remove it' from your body. The serum halflife -- do you mean the serum halflife of mercury or of the methylb12? It's my understanding that mercury stays in the body for years, decades even.

    THANKS FREDDD.
  7. Freddd

    Freddd Senior Member

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    The serum halflife -- do you mean the serum halflife of mercury or of the methylb12? It's my understanding that mercury stays in the body for years, decades even.

    The serum half-life of methylmercury has been measured in the case of accidental exposures as being about 71 days which is just about exactly -1% per day, like a benzo taper. If and when methylb12 methylates mercury it becomes monomethylmercury with a measured serum halflife of 71 days via excretion in the liver bile.



    Well, my serum b12 was measured twice in the last 2-3 years, and was high both times.


    That means far less than you might be inclined to believe since people in studies who are responsive to methyb12 in a study of peripheral neuropathy had average serum levels over 700pg/ml and some were higher than 1500pg/ml before treatment as long as they were selected by symptoms rather than test results. Also, as many studies are confirming over the past 20 years, is that cerebral spinal fluid can be low on cobalamin even while the serum level is anywhere from "normal" to "high".
  8. Binky123

    Binky123

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    I can only reply with another anecdotal report, but along time ago I took perque b12 and felt nothing. I feel a powerful impact from Methylb12 though. I can't say I've had consistent positive results with either yet.
  9. Freddd

    Freddd Senior Member

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    Hi Binky,

    Having all needed cofactors and critical cofactors in place can account for the majority of consistent positive results. The problem is that healing progresses a step at a time along a path of many steps, all of which are just other ways for things to be wrong until the final step signals "healed", and there might be hundreds of such processes going on at once. So an awful lot of "positive" steps don't look or feel positive at the time.
  10. Freddd

    Freddd Senior Member

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    Hi Danny,

    I'm responding again to this post to address a different issue


    Correct me if I'm wrong, but it seems to me like you came from a place of (near) paralysis, which is the opposite of many of us who are 'wired but tired', myself being 'extra wired'.

    This could very well point at a CSF/CNS cobalamin deficiency of one or both kinds of active b12 with or without folate deficiency, without a body deficiency of cobalamin, or maybe a body deficiency of one kind of cobalamin but not the other. The problem with understanding more of what is going on is a lack of data.

    But it could very well help to explain why at least some of the people who try the folates and b12s get a lot worse.

    First I would like to make a distinction that is not well recognized. There are at least 4 separate and distinct b12 deficiency symptoms plus folate deficiency, which is unknown whether CSF folate levels can be low while body levels are normal or high. Anxiety is one of those difficult things. B12 deficiencies in the brain can cause all sorts of mood and personality changes including depression, anxiety, psychosis, hallucinations etc. Some of those can disappear within hours of dosing with rapid biochemical changes and others are intensified. So when doses of the forms of active b12 and folates are taken, almost all the neurological symptoms are increased in intensity. From my own experience and experiences of others, the path of healing in the brain can be very intense and volatile for months. My experience has repeatedly been about 9 months of volatile changes, on each round of neurological healing. It sure doesn't feel like healing and improvement until right near the end of a healing cycle. Further there is the "shaping the brain" problem. Studies have shown that changes visible on an MRI can occur in two weeks of learning a new skill, juggling being one used in a study. I hypothesize that learning meditation and emotional skills of various sorts also causes brain changes which might in part account for the proficiency increases, the same as learning new physical skills. As they are pointing out the quicker rehabilitation starts on brain injuries (lots of recent publicity) the quicker the brain can start making new pathways and learning lost skills. It is my opinion that the neurological healing period triggered by the active b12s, folates and cofactors can make use of specific rehabilitation and retraining that can happen more powerfully during this period. There are many spiritual practices that do work on retraining emotional, personality, attention and consciousness. I have mentioned this doorway opening during this period for at least 4 or 5 years now, but I don't bring it up very often just as I don't bring up physical rehabilitation very often. Exercise provokes healing of the muscles after all the cofactors needed for healing are established. This is not popular. Back in 1982 I brought up the idea of data mining to an HMO to pick out women at risk for having babies with neural tube defects and providing them with suitable prenatal vitamins. I was told that it was "politically incorrect" to point out such things as poor dietary practices because it could appear to be a "blame the patient" approach as it points out that we do have individual responsibility in what we eat. After 18 years of severe disability and decades of increasing problems beforehand, just because my symptoms lessened I wasn't healed. It took specific rehabilitation efforts for the entire time since then to regain muscles, a normally functioning emotional and personality system and just about everything. Even after my mitochondria were working correctly I wasn't any stronger and the wasted away muscles didn't just grow. I had to work through 20 years worth of psychological system failure, all sorts of unprocessed or ill processed events, "habits" of thinking sick which when ill, were adaptations in some cases or neurological failure in a physical and functional sense in other cases or combinations.

    Have you gone through the list of symptoms and identified all the ones you have or have had, all the ones that changed when you tried folate and mb12 and other things, how they changed and the things that didn't change and the things that reverted when you stopped the items?

    All these things might help in distinguishing and understanding what is going on. You need to understand that the tests used for folate and b12, direct and indirect do not predict response or lack of response. The CSF/CNS cobalamin, MMA and Hcy tests don't appear to be done outside of studies and even then might tell you when you are in really deep trouble but again do not predict responsiveness or lack there of. And then there is the situation that response may look very negative all the while actual healing is going on.

    If you are interested in seeing how your symptoms stack up compared to specific sets of symptoms for the 5 different deficiencies I have mentioned it might prove interesting no matter what it shows.
  11. richvank

    richvank Senior Member

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    Hi, freddd.

    I would be happy to receive the list you've offered. I don't know to what degree I would be able to sort out which symptoms on your list were helped by the hydroxocobalamin-containing protocol and which were not, but perhaps I could extract something about that from our study results. I do still have (at home) the individual responses from the women who participated in our clinical study, and they include responses on a list of symptoms, which you can find in the Appendix of our paper, which is the last item on this webpage:

    http://www.aboutmecfs.org/Trt/TrtGSHIntro.aspx

    I expect that your list will include many more symptoms than were included in the list we used (which I think Dr. Nathan got from Dr. Ritchie Shoemaker).

    I'm away from home for an extended time, working on remodeling a house, so it will be a while before I will be able to access these data. Nevertheless, I would appreciate receiving your list, and I agree that it would be worthwhile to take a look at this. Thanks for suggesting this.

    Best regards,

    Rich
  12. Freddd

    Freddd Senior Member

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    Hi Rich,

    I want to clarify one thing about the following startement.
    "We know from much research that 33% of persons have zero response on the measures taken, to hycbl and/or cycbl and the rest often have very minimal response both as to range of symptoms affected and degree of affect."


    As you know, this is from many different studies on cyancbl and hydroxcbl. In other places I have stated it with a little more detail. This applies to the specific symptoms being tracked in a specific study. If the study is tracking uMMA and Hcy for instance and those are not affected in that person, it doesn't matter that 40 other symptoms might be affected. Also, with only a limited subset of symptoms being used in any specific study, that is only saying that the specific items tested for are not affected. Further, as I have agreed before, many of the non-perfomance issues are also lack of critical cofactors as most studies don't include them or the right forms or whatever.

    Take me for instance. If I had been in a study of MCV being kept below 100 and serum b12 above some very low minimum, by cyanocbl and folic acid, I would have been a total success despite my considering cyanocbl as near totally worthless. The adb12/mb12 is a good 10,000 times more effective. I had marginally siufficient response to cyanocbl not to develop macrocytotic anemia. However, I developed some 150 other mb12/adb12/mfolate responsive symptoms while taking them. If you broaden the range of possible responses and include them all, then some response is more likely. However, If you compare the span of responsive symptoms and the depth of response, adb12/mb12/mfolate are far far far more effective than Hycbl/cycbl/mfolate or whatever. That is what we will eventually see when all the data is in.
  13. Freddd

    Freddd Senior Member

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    Hi Rich,

    I read the paper and looked at the symptoms checklist. Most of them are already in the list but often with different wordings or lack of the specificity that is seen in the neurological list. A few of them have been overlooked by failure of my memory and succeeded in sparking my memory. Some of the others are female specific I didn't do a very good job at picking out from people's comments and don't have from personal experience. The one that surprises me is "nosebleeds" which used to be a terrible problem for me. I have never mentioned it on any forum and haven't seen anybody mention it until I read your list. In college we were performing Handel's Messiah. I was in our white tie and tails performing outfit. I'm a first tenor and on a high note suddenly blood started gushing out my nose. I quickly dropped off the riser out of sight to deal with it. What a mess.

    I am going to modify my list to add new detail that I was lacking. I am also going to put this list to the right in a separate section and then map each of these to all the presently included items and map the characteristics to them for a compact display. This should make including whatever level of detail you can easier to do and to see whatever there is to see.
  14. richvank

    richvank Senior Member

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    O.K., Freddd. Thanks.

    Rich
  15. drex13

    drex13 Senior Member

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    Hi FREDD,
    A couple of questions : What exactly are the critical cofactors and amounts you recommend having in place to support the methylation protocol and do you recommend having them in place before starting or is it okay to start together or add in later ? Thanks to both you and Rich for all of your recommendations, input, and ideas.
  16. Freddd

    Freddd Senior Member

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    Hi Drex,

    The Basics are just that, the items that are foundational to any kind of proper body functioning and tissue building; A, B-complex, C, D, E, calcium, magnesium, zinc, trace minerals, omega3 oils and potassium. Potassium is very important because sudden onset low potassium can occur within 3 days of starting the supplements because sudden healing can start and all sorts of things go wrong without potassium, even potentially fatal things. Then the 5 star brand methylb12, 5 star brand Dibencozide (adenosylb12) and Metafolin. Once a person has been depleted all these are needed for rebuilding even if a person normally might not need both b12s to maintain. After starting these 3 items there can be a lot of startup effects as they start hundreds of healing processes all at once. As these level off and things remain unaffected, then a few other things may help a lot. Adding L-carnitine fumarate and Alpha Lipoic Acid can increase mitochondrial energy generation which can affect body and brain, muscles and moods. SAM-e can also be something needed to get the processes rolling. For some people a lack of vitamin D can stall b12 startup almost completely until they move it up to 5000 IU. A lack of enough zinc can do the same requiring a move to about 50mg of zinc a day. So there is really a lot of fine tuning that can be done. A critical cofactor is one whose lack can cause an almost complete lack of response. Any of the basics could be in that situation but people are rarely that critically short of C or A or magnesium for instance. So the most common critical cofactors are SAM-e, l-carnitine fumarate, D-ribose, D, zinc b-complex twice a day, and omega3 oils after you already have the mb12,adb12 and Metafolin in place. The critical cofactors usually need to be titrated because the effects can be very powerful if their lack is holding things up. It often takes a combination of the critical cofactors, anywhere from 2 of them to all of them at the same time. I suggest adding one at a time after the basics and essentials are all in place. Read at the very beginning of the B-12 - The Hidden ... thread for a lot of basic info.
  17. drex13

    drex13 Senior Member

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    Thanks Fredd. Is there an issue with taking copper, as in a multi with a small amount of copper in it ? I thought I read somewhere in one of these threads to not take anything with copper. Maybe I imagined it. How much potassium would you recommend ?
  18. Freddd

    Freddd Senior Member

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    Hi Drex,

    There has been a lot of back and forth about copper, as to thge right amount or the right proportion. Too much isn't good and not enough isn't good. If you have copper pipes and live in a natural soft water area you could be getting lots of copper in household water or none at all in hard water areas.

    Potassium is highly variable. I would say 1 or 2 tablets a day with food for prevention. If you develop certain symptoms after starting the protocol, which can include muscle spasms when relaxed, heart palpitations, mood changes and so on that could be reduced potassium showing up. On the blood test 4.5 is good. For me I start having symptoms below 4.2. It can hit so hard and suddenly that you could be incapable of going out to get some.
  19. Shellbell

    Shellbell Senior Member

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    Hi Everyone, I was asked to share my experience with glutathione and precursors by a member of this forum.

    Over two years ago, I tried glutathione IVs. This was the worst experience and the sickest I have ever been in my entire life. After my 3rd IV, I thought my life was over. I was terribly ill, couldn't get out of bed, barely could speak or listen to anyone, my nervous system was in complete overdrive while the rest of my body seemed to be shutting down. I dropped 15 pounds within a very short period of time (after already losing 20 from the previous year) and started losing my hair. I was bedridden for 4 months before I could converse anywhere near normal with anyone. It took me another year before I could step out of my house to do anything with my family. Even then it was always very short lived trips. I refused to allow my family to take me to the hospital during the worse of my decline as it was a doctor that got me sick with my illness in the first place. Then the doc who gave me the gluathione IVs wasn't any better. My trust in doctors these days is pretty minimal. The doc that administered the IV was mystified and didn't know what to do.

    Before glutathion, I had mostly CNS type problems and severe fatigue. After, I developed joint and muscle pain, horrible stomach pain which I still deal with today, even though less frequent and less severe, but quite bothersome. Just a note, a year prior to my glutathione experience right after becoming ill, I was diagnosed with b12 and folate deficiency. I really struggled with supplements as I was sensitive to anything I took.

    My glutathione experience made me much more sensitive to supplements which has made it difficult in trying restore any of my deficiencies. I have also tried using glutathione precursors, basically with the same effect, just not as severe. I won't try them again. They just don't work for me.

    After finding a doc that has provided me with help in turning a bit of a corner (finally!) and reading about methylation treatments, I feel I am now ready to embark on Fred's methylation treatment and actually started a couple of days ago. I am reacting to the supplements, but nothing like I did before. Also, just a quick thank you to Fred and Rich for providing such valuable information to all of us. Let the healing begin!
  20. susan

    susan Senior Member

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    Gold Coast Australia
    I posted last week that Methylation is going weird for me. I take a prescribed Methyl/folinic acid nasal spray I felt drunk like when my bowel was getting de bugged. My Metametrex Test results said 12mths ago I should have Methyl B12 500mcg and 800mcg Folinic acid. I had to stop it last March for other reasons. Now I have started again on 1.25 Methyl B12 and started low on Follinic acid...about 1.25 Mcg . Everything was fine. the next month increased to 400mcg folinic acid.....the drunk feeling started. Then I upped the folinic acid to 600mcg. I thought I was going to die on Sunday. I immediately stopped it all.
    Since then I have improved and now 6 days later I am so sleepy and feel horrible.......heart is racing. Also on Tues late afternoon my Bp went up and I felt wired. Went to sleep and woke up with a panic attack. Yesterday I again was not too far from one. I am taking co factors, e, c magnesium.selenium fish oil.

    What is it about the folinic acid?.....how soes i taffect the B12

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