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Building Blocks of a Disorder

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, May 15, 2012.

  1. Freddd

    Freddd Senior Member

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    Eight years and 51 weeks ago I put that first mb12 "Under my tongue ..." (As sung by the Stones). I knew my life was changed in 1 hour flat. Over the next year I learned there are 4 b12 deficiencies, not one, and a whole lot more. Things separate out into components that have some at least logical discreteness.

    1. Indentification of effectiveness of current form of b12. When evaluated against the list of symptoms for which both active b12s are near 100% effective with suitable cofactors the identification of cyanocbl and hydrocbl goes like this. Cyanocbl was noticably but slightly effective for 6 of 300 symptoms. Hydroxycbl caused rapid onset of skin lesions that continued to spread as long as I took it. Hydroxcbl could not be continued long enough to determine if it had any effectiveness because of epithelial lesions and rapid neurological breakdown. A combination of methylb12 and adenosylb12 were effective for 175 of the 200 symptoms I had. Results will vary by person. However, hysdroxycbl and cyanocbl are not full effective for anybody. The degree of partial effectiveness varies considerably from 1 to maybe a dozen or two dozen symptoms affected partially.
    2. Idenitifcation of BODY - mb12 deficiency
    3. Identification of BODY - adb12 deficiency
    4. Identification of CNS/CSF- mb12 deficiency - large dose required to penetrate CNS
    5. Identification of CNS/CSF - adb12 - large dose required to penetrate CNS
    6. Indtification of sudden low potassium casued by methylation (healing) startup
    7. Idenitification of folate insufficiency
    8. Identification of paradoxical folate deficiency - folic acid
    9. Identification of paradoxical folagte deficiency - folinic acid
    10. Identification of paradoxical folate deficiency - vegetable food source folate
    11. Identification of paradoxical folate deficiency/insufficiency on small doses of Metafolin
    12. Identification of CNS/CSF - adb12 - normal dose or micro dose required to penetrate CNS coupled with neurological hypersensitivity to l-carnitine fumarate in limbic system all tied into neuronal ATP hypersensitivity and and increased sensitivity to dopamine variations some with Benzo side effects affecting dopamine receptors causing "Tolerance withdrawal".
    13. Hypothesized - CNS hypersensitivity to mb12 with microdoses but not to adb12. As some mb12 converts to adb12 to test this one would need to saturate on adb12 first and see what the mb12 response is after that. There is some indication that after adb12 and carnintine are in place that mb12 hypersensitivity may appear as it needs the functioning mitochondria as a prerequisite.
    Basically hydroxycbl, like cyanocbl, will affect some small percentage of the 300 symptoms, maybe limited to a number that can be counted on your fingers. Item 12 above is the only one about which there is any question of whether it can be substantially healed.


    So out of all of these building blocks and probably a few more not yet identified we can build the follwoing. Remember, there can be comodbidities and otehr complications that are not related and DON'T respond to the active b12 protocol.
    1. ME - Active b12 protocol 90% effective against these symptoms
    2. CFS - Active b12 protocol 90% effective against these symptoms
    3. FMS - Active b12 protocol 90% effecrtive against these symtpoms
    4. Pre-parkinson's leading to (hypothesized) Parkinson's - Carefully titratrated active b12 protocol affects this hugely, whether this leads to effectivbe healing or not is currently unknon.
    5. Pre- MS (hypothesized) leading to (hypothesized) MS (MS may not be anything really different from SubAcute Combined Degeneration except the specif-c nerves affected.
    6. Pre- ALS (hypothesized) leading to (hypothesized) ALS
    7. Pre- Alzheimer's (hypothesized) leading to (hypothesized) Alzheimer's
    8. Pre- SupraNuclearPalsy (hypothesized) leading to (hypothesized) SupraNuclearPalsy
    As these identifications are pragmatic, they also suggest possible treatment by correcting the funtional and/or absolute deficiencies. The first 3 can be reasonably well healed in a year with several more years to rehabilitate and finish healing. The question is what about these others, Item 4 for instance which is up right now. Does correcting the deficiencies in the end correct the problem? When does it become too late for repair and the disease becomes inevitable. Can it be moderated? Should it be treated even if the treatment is unpleasant or should the person simply take the path of avoidance of unpleasentness into the full blown illness? Can it be effectively treated any other way than ending the deficiencies?

    Lack of methylation happens with the lack of methylb12 and Methylfolate though these are not generally enough in themsleves and are recycled many times receiving methyl groups from Choline, TMG and other donors. SAM-e is a product of having methylb12 in the body and unless added as a separate item is part of a zero sum situation. I don't think there can be broken methylation in the presence of methylfolate and methyb12. This abnormal condition only occurs when the body is being starved for the real thing by being given pseudo vitamins like folic acid, cyanocbl and hydoxycbl or has paradoxical folate deficiency or other dietary and/or heriditary processing conditions. These three pseudo vitamins do not allow the body to normalize. Adenosylb12, methylb12 and Methylfolate allow the body to normalize. The intial stage of the body normalizing is for cell reproduction to turn on allowing general healing. 50mcg of methylb12 (1/4 of a sublingual 1mg ET or Jarrow) and 50mcg of adenosylb12 appear sufficient for widespread body healing but may not be enough for CNS normalization. As healing with mb12 and adb12 appears dose proportionate more of these allow somewhat more widespread healing to occur at the same time.

    ATP startup is often by far the "stronger" startup. It can independently trigger enough healing that didn't happen with mb12/metafolin that it can casue an increased need for potassium and additional Metafolin and additional mb12.
     
  2. Freddd

    Freddd Senior Member

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    I would also like to add to the above that most all of these diseases have had (cyanocbl OR hydroxycbl) AND folic acid AND b6 tested as a treatment and/or preventive because other people can read the research and see that low csf cobalamin and elevated MMA and/or HCY sure seems to indicate a b12/folate/b6 deficiency. Since they automatically use the inactive forms of all the vitamins they have had no results. It is not conjecture on my part that the inactive hydroxcbl, cyanocbl, folic aicd and b6 don't work. Reserarch as already demostrated if not proven in all cases that they don't. Based on our collective experiences with mb12 and adb12 and metafolin and p5p it is clear that a lack of response to the inactive forms in no way predicts what the active forms might do. Also, they leave out all sorts of other important and even essential items. The tests with just the cyanocbl/hydroxycbl preceded the 3 item tests usually so these are gnerally 2nd generation tests. The active b12 protocol has been through in excess of 30 generations of variations getting to be effective. If you include all the side trials pinning down what brands of b12 work and how sublingual relates to injection, why all sorts of variations don't work, micro titration trials, combinations trials and all that, there are well over 100 generations of active b12 protocol, hundreds of years if done sequentially on the usual type of research cycle, to get from hydroxycbl-cyanocbl & folic acid and b6 with doesn't work to the active b12 protocol which works on some of the listed diseases and might help for the hypothesized ones.
     
  3. alex3619

    alex3619 Senior Member

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    This active/inactive issue goes beyond B vitamins too. Vitamin E has a range of versions with different activity (gamma or mixed tocopherols are better) and much of the CoEnzyme Q in the diet is Q9 (from vegetables, meat has Q10). As we get older we lose the ability to convert Q9 to Q10, so for older people an increase in meat intake is required for good health.

    I am currently trialing Thorne Research B Complex which has mb12 and adb12, as well as methyl folate and folinic acid (and I am aware that not everyone tolerates folinic acid). This has currently (only out to two weeks so far) reversed my circadian dysfunction. I get up shortly after dawn every day now, though I do have to nap once or twice in the day. Based on past experiences this might well stop working at some point, but then again it might continue. Side effects include slight fevers and a general higher body temperature (though I was never particularly cold unlike some). I also have an increase in allergic effects, though I wonder if this is due to increased mast cell activity as my immune system has had a boost?

    Testing inappropriate vitamins is a big problem. So is testing vitamins in isolation. Vitamins work in combination with each other and cofactors - highly reductionist experimentation can be expected to fail on occasion for this reason alone.

    What is the basis for your claim that this is helpful in Parkinson's Freddd, if you can say? I ask this because apparently an uncle of mine died from it, or at least died in the advanced stages.

    On the precautionary principle I think every B complex and every mutivitamin should do away with the common drug forms of any vitamin. I am aware they use these for two reasons - they are cheap and they are stable and so do not degrade much over time. The natural forms will reduce the shelf life, but they will also be much more effective. This includes vitamin E. Every vegetarian formula must also include CoEnzyme Q10. There may be other vitamins similarly effective but I am not up to date on vitamin research.

    Bye, Alex
     
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  4. Freddd

    Freddd Senior Member

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    Hi Alex,

    What is the basis for your claim that this is helpful in Parkinson's Freddd, if you can say? I ask this because apparently an uncle of mine died from it, or at least died in the advanced stages.

    I have no idea if it will be helpful in Parkinson's. What I have identified is the symptoms characteristic of a specific one of 4 b12 deficiencies with limbic system damage and symptoms that look like Parkinson's symptoms (which damages the limbic system, and which are exaggerated by benzos which change the dopamine receptor making them less sensitive giving a preview of characteristics after dopamine reduces for other causes.

    These folks are hypersensitive to adenosylb12, l-carnitine fumarate and possibly mb12. They tend to develop "tolerance withdrawal" on benzos and anxiety is a major characteristic. When the neurons turn on from mitochondrial function it triggers intolerable anxiety, panic, fear and in succession sometimes rage and even murderous rage without provocation. One can get quite a tour through the behaviors of the limbic system.

    I posted a more complete description in the past few days on this same methylation menu.
    Some questions exist:
    1. At what point does it cease being a vitamin deficiency and begin to be Parkinson's?
    2. When does the damage become irreversible.
    3. How much can be reversed at any given point?
    4. Is the actual damage the same as in Sub Acute Combined Degeneration and MS, that is to say demyelinations that can be healed to some extent or something different?
    5. Can further damage be stopped by reversing the deficiencies even if existing damage can't be healed.
    Many b12 deficiencies are thought to be hereditary. My kids all have similar b12 and folate characteristics as I have. I also had a CNS-CSF adb12 deficiency of a moderately extreme nature as well as a marching mb12 deficiency as well as both body deficiencies. I went though two 6 month CNS healing periods that were quite emotionally volatile and unpleasant.
     
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  5. Lemnia

    Lemnia

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    Fredd. Thank you for this article.
    I have been very ill for 4 years, firstly diagnosed with CFS/ME and then in 2015 I tested positive for Lyme Disease.
    I believe I have a vitamin B12 Deficiency (yet my tests constantly come back sky high) and that I have a blocked methylation pathway.
    After reading about the MTHFR gene and also Methylation issues that can be a cause of why somebody isn't getting well even though they are being treated for the illness, I decided to get tested by 23andMe.

    My results indicate I need help in this area.

    I am homozygous for MTHFR C677T /
    COMT V158M / COMT H62H / VDR Bsm

    I am heterozygous for MAO-A R297R/ MTR A2756G/ MTRR A66G / CBS C699T.

    My Mother almost died 20 years ago when they failed to diagnose Pernicious Anaemia, after 9 months deteriation she collapsed and it took 17 days in hospital before they found it. My Father died of Parkinsons. I am now bedridden most days. Your post makes sense and sheds light.

    Can you please recommend or guide me to somebody who I can consult with (specialist/doctor?) via Skype or phone as I am in the UK (do you consult?) I do know that with my combination of MTHFR and COMT I need to be very careful with what I take. I'm highly sensitive to most things.
    ANY help at all with this, I'd be most grateful !!
     
  6. helen1

    helen1 Senior Member

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    @Lemnia, if you want to get someone's attention you do this: @Freddd.
     
  7. Lemnia

    Lemnia

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    Helen, thank you and forgive my ignorance on this, but 'what' exactly do I do? Whatever it was you did I hope it gets Fredd's attention and he will deam me with a reply.
     
  8. Marc_NL

    Marc_NL

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    When you use the @-sign and start typing the forum name (like Helen did) you can select the name from a list.
    The colour of the name is changed to blue.
    Then this particular user gets an alert and can reply in your thread.
     
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  9. Lemnia

    Lemnia

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    Thank you.
     
  10. Freddd

    Freddd Senior Member

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    Hi Lemnia,

    Being "very sensitive" to methylators also means as far as I can tell, being very deficient. I was very deficient and very sensitive. I could take 10 different btrands of b12 for 3 days each and tell you the best ones for me. The more they knocked my socks off the better they healed me when I took all the rest of the needed nitients.

    Basically I don't know how to heal without turning healing on. As my doctor has said to me, actually healing can be painful and have lots of side effects which if not treated can be deadly and if corrected aid healing and relieve induced symptoms.

    B12 levels come back sky high if supplementing adequately with MeCbl. If not supplementing than a high level can be breaking down liver cells or lack of cofactors like methylfolate. Do you have anxiety as one of your symptoms?

    Fred
     
  11. Lemnia

    Lemnia

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    Fred thank you for your reply. I would say my anxiety and ability to handle stress is far lower since I became ill. Other situations are heightened, such as claustrophobia, not just that I can no longer enter elevators but being inside in crowded places. This has all come about since becoming ill. I do not take supplements so the high B12 is not from that. I want to start on a course to unblock these Methylation pathways which I believe are an issue for me. I know I have read somewhere that for a person who has homozygous for MTHFR C677T and
    COMT V158M / COMT H62H as I do, one must take great care and cannot just go ahead with the normal protocol, as this would cause dangerous reactions. I just need to find somebody who is knowledgable enough to guide me in this regard. There doesn't seem to be anyone here in the UK who specialises in this.
     
  12. Freddd

    Freddd Senior Member

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    Hi Lemia,

    I had as extreme response as anybody here. I just interpreted them differently because I've spent 30,000 hour studying the situation, run thousands of days of trials, thousands of combinations. You know the pogo stick illusion with a strobe light showing the person only in the air.or only on the floor or wherever. Observing ourrselves is like that. With MeCbl for instance, observed at plus 1 hour, wow, neurology is waking up, usually some ATP is starting up too. It can be intense and feels like a strong stimulant and there are hypotheses that this is not how it should be rather than a flag signalling the beginning of healing. At + 3 days a person starts feeling very sick from usually induced potassium deficiency which can be fatal if ignored or if called "detox" as something that has to be gone through. It isn't. It's refeeding syndrome. If you quit at that point, at plus 30 days observation you are in the same boat you were in before taking MeCbl or worse and wondering what you can do to heal since that didn't work. If one learns to follow the clues provided by refeeding syndrome and correct the potassium deficiency, every day, and increase folate rather than teasing your body with 10% of what one needs to be folate deficiency symptom free and maintaining starvation on 6 or 7 of the estimated 8 to 10 internal triage levels, and I experienced that, because I did just that, being cautious, and I had a great deal of further CNS damage. From what I have seen that anxiety is caused by very specific locations of damage from demyelination in the brain with mitochondrial failure in the neurons. I'm not a doctor but I have lived through it and almost ended up in a wheel chair 7 years ago. Then I tried what I should have tried 6 years sooner, had the Metafolin been available, and reversed a lot of the CNS neurological damage. It was one of the last triage layers to be activated to healing. After that came muscles and then my kidneys. Now with the copper, which was diagnosed by symptoms with a test that showed "low but in range", I was undergoing upper motor neuron damage and my connective tissue was falling apart and cost me half my teeth so far by rapidly shrinking gums. Nobody could tell me a year ago or 5 years ago what I needed to do to correct these things. Only realizing that it was refeeding syndrome and investigating it from that direction was that something that could be seen.

    I will have more to say but have to go now.
     
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  13. Lemnia

    Lemnia

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    Lot's of information there thank you again. Trying to decipher it and break it down to a starting point. I have the CNS damage, as though the signals and neurological pathways are misfiring or crossed in my brain. Pain is a constant, feels as though my brain is swollen. My muscles in upper body especially upper arms is not only painful and wasting but gives a feeling of dislocation almost. I am too ill to play at being my own doctor. Who the heck does one go to for help if not able to figure it out for themselves. I considered myself above average intelligence prior to this illness, certainly not the case now. Please write more as I'm interested in what you have to say.
     
  14. Lou

    Lou Senior Member

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    Hi Lemnia,

    Fredd's protocol can be incredibly difficult to understand when you're first beginning. There's just so much to learn and it's not one size fits all and you're trying to figure it all out while changes, sometimes good, other times seemingly bad, are happening within you body and brain. It has, however, helped many people here, myself included.

    While he's away perhaps I can give a shot at explaining something further of the folate portion of the deadlock quartet (DQ). The DQ you probably already know consists of Mbcl, methylfolate, AdClm, and carnitine fumerate. The deadlock refers to his belief that for proper healing all four eventually have to be in place and each of them require the others to perform in optimum fashion.

    One of the first things people usually start out with is methyfolate, most of us use the brand name, Metafolin. It's tricky, though, it can work at first and then problems can emerge, you may feel worse than ever. Sometimes, what is happening (the problem) is not the added folate as you would naturally think but rather that your body craved the folate to such an extent it was quickly used up in some initial healing and was depleted even worse when your body started stealing it from other body levels(these body levels needed to hold on to what little it had and suddenly it gets taken away) to continue healing. I think Fred calls this paradoxical folate insufficiency. It will likely happen to you so be on the watch for it.

    So, it can be that it's not too much folate you've taken causing the problem, it's that your body actually needs more.

    Then there can also be the problem of folate added without the presence of adequate mb12 in which case the folate can be kicked out of the cells and into the bloodstream where it can do damage.

    Okay, that's as far as I'll go for now, but it's only a small piece of what you will have to learn. If I can gain some small knowledge of it I'm sure you can as well. This is kinda the way you have to learn it, piecemeal, but eventually it comes together. I'm no expert by a long shot, so any of this I've said is subject to further clarification by @Freddd or others here more knowledgeable than I. I wish you well.
     
    Last edited: Jan 7, 2016
  15. Lemnia

    Lemnia

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    Hi Lou. Thank you. You're not kidding about it being complicated when starting out. I need this broken down in layman's terms and directions. A list, that tells me what to get, when to take and what reactions to expect and look out for. Fredd's knowledge is immense and I am grateful to you all, but to use this knowledge being as limited as I am now I need to keep it simple with the directions. I want to try this, I believe as with many that B12 IS A PROBLEM FOR ME. My first concern is that I have read repeatedly "If you are double homozygous for MTHFR mutations, you should proceed very cautiously with methyl-B12 and methyl-folate supplementation as some people do not tolerate high doses." I am double homozygous for MTHFR & COMT. I have no doctor to ask can I proceed with this. I have found nobody here in the UK with knowledge of this. So, with this in mind and taking what I can pull from another of Fredd's past posts, can you, Fredd, or anyone please tell me if I have the following protocol correct ??

    1. Start with Jarrow B-Right
    2. Add Country Life Dibencozide (adenosylb12) retaining for 45 minutes or longer under upper lip.
    3. Once comfortable add Methylb12


    Can you advise how much of each to take? ( I am currently not taking ANY supplements).

    I really appreciate any help. I can honestly say the last 4 years have been a living hell from which I have wanted out many a time and to find this beacon of hope means a lot when you feel so utterly desperate.

    Karin
     
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  16. Lou

    Lou Senior Member

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    Hi Karin,

    Not sure how old that information is regarding those three supplements listed in your post, but it is not the order in which I started.

    I am reluctant to advise you on how to get started, especially given the mutations you mentioned. Fred is likely to show back up before long or perhaps someone like @ahmo or others here well versed in the protocol will be willing to give you some pointers.

    Hang in there, it's a long haul but you may be on a trail that will make a difference.
     
  17. Lemnia

    Lemnia

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    Thank you for your reply. Is there anyone that can guide me to the most up to date protocol for this please????
     
  18. Lou

    Lou Senior Member

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    The problem may be that not many are watching this thread. You could post your question on Fredd's B12 Protocol or the Refeeding Syndrome thread and more likely get a response.
     
  19. sregan

    sregan Senior Member

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    Country life I thought wasn't preferred because it contains folic acid. Anabol Naturals, Dibencoplex was the better choice.
     

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