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Active B12 Protocol Basics

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, May 8, 2011.

  1. Sea

    Sea Senior Member

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    If you want to get a member's attention tag them like this @Looking for Answers or send them a private message
     
  2. AngieLynn

    AngieLynn

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    I'm recently diagnosed with the C677T methylation disorder. I have late stage lyme and a long list of other issues. I have some questions after reading these posts, including Fredd's. I'd appreciate some input from you all, and Fredd. Thanks! Here goes:

    1. I see Fredd's discussion on glutathione. I've been getting glutathione IV's for many, many years. Without them, I become like a person with alzheimers - seriously mentally impaired. With them I have some quality of life. The IV's also improved my immune system.

    I'm beginning to build up on methylfolate and methyl b-12. I've been studying the protocol by Dr. Ben Lynch, and have begun at the bottom. I see Fredd says it's a disaster to take the glutathione, but I'm not sure what to do. I'd appreciate any advice.

    Also my sister is taking glutatione IV's for Parkinson's and it's seemed to help her. Any thoughts on that?

    2. Can someone point me to Fredd's most recent version of his protocol? Is there somewhere I can read a simple description of the protocol?

    3. Do I need a b12 with two kinds of the b12? I've just been taking the plain methylcobalamin.

    4. Dr. Lynch's protocol for methylation has you get on the Betaine TMG, but I read online that it can actually increase cholesterol levels. Does anyone know about this? Is it still important to take?

    Thanks!
     
  3. Gloria H

    Gloria H

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  4. Freddd

    Freddd Senior Member

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    Hi AngieLynn,

    I'll try to explain as best I can for your answers. Concerning glutathione. First, there is a the completely unexplored relationship of dose to effects. I would like to describe the people who were in the N=10 trial. ALL 10 of us, using our preferred or available varieties IV glutathione, un-denatured whey, commercial glutathione generating product or simply NAC plus L-glutamine, but large enough doses that we all felt some effects within the first day or two.

    It may have been way too much, but were doses being enthusiastically touted by folks on the internet. All of us had already had 6 months or more of substantial healing with all of us having had partial methylation block, methyltrap and partial ATP block; basically ME and/or CFS and/or FMS. We were all pretty sick to begin with.

    By that time I had achieved a high level of healing in all levels but the muscles. I had already had substantial CNS recovery, regaining feeling and motor control of my toes. I could move them and feel them move. I had been falling and didn't know where or what position my legs were in. I could see a wheel chair in my future, then I was able to reverse that substantially.


    Also my sister is taking glutathione IV's for Parkinson's and it's seemed to help her. Any thoughts on that?


    Yes. Very specifically on Parkinson's. Let's look at Parkinson's. It involves damage in the limbic system from apparent mitochondrial failure increasing MMA in the Cerebral Spinal Fluid along with generally a low cobalamin (B12s) level in the CSF which is a separate compartment form the body and has independent results. ATP is required to make dopamine.

    It appears that lack of ATP generated in the neurons affects dopamine levels. As the whole methylation-ATP business is at least a 4 way deadlock (estimated 95%) with another possible dozen or more items having a low probability but some, of being a deadlocking item. So let's picture these limbic circuit neurons being partially disabled, irritated, inflamed maybe. The same is true of neuropathies anywhere in ones body.

    Glutathione does indeed make these feel somewhat better, by turning them off even more and if continued long enough, making them totally non-functional and no longer painful. I haven't recovered in 5 years from much of the neurological damage and have been walking on broken glass ever since, not to mention the CNS cognitive and mood damage.

    From having the SACD at about a 75% remission before glutathione. I'm struggling to maintain it at 50% remission ever since. By 6 weeks it was clear that it was doing damage to all of us and we all stopped the trial at 6 weeks. I couldn't ethically ask anybody to continue at that time. Increased neurological damage, CNS and peripheral, was not one of the disclosed risks. Had we known the very real risk of damage none of would have done that. However, it made clear what it was doing.

    Now a person with what looks like "pre" or "pseudo" Parkinson's has much discomfort and often "intolerable" emotional sequences, i.e. anxiety, panic, fear, anger rage, homicidal rage and severe depression started by any or all of the Deadlock Quartet, especially AdoCbl and even more carnitine (ALCAR 90% or LCF 10% dependent upon person). So basically glutathione can put a person into methyltrap in several hours.

    This stops methylation which can deadlock ATP sometimes. But basically, the first days of symptoms are methyltrap or partial methylation block start appearing in hours to days when the level of glutathione gets high enough (whatever that is). MeCbl symptoms start accumulating and coming back after the 3rd day and after more than a months partial ATP block starts showing up unless totally blocked by lack of carnitine which is likely in Parkinson's.

    As most people who get glutathione symptoms put it, with "glutathione detox" is the return of symptoms. The catch is if the person has all the methytrap and partial ATP block in the first place they have no return of symptoms because they never left. So the only thing noticed is the soothing of the nerves.

    . I see Fredd says it's a disaster to take the glutathione, but I'm not sure what to do. I'd appreciate any advice.

    You know, at this moment I can't know what is going on. I do know that it is estimated by some researchers that 40% of what is diagnosed "Alzheimer's dementia" is actually B12 deficiency dementia. Also that 50%+ of people over age 60 are deficient in b12. As b12 is not a single thing, but rather at least a 5 different (AdoCbl-CNS, MeCbl-CNS, AdoCbl-body and MeCbl-body, and organs) there is not a simple answer.

    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-19

    On about half a dozen posts in the last few pages of the above thread there are lists of symptoms affected by which nutrients. At the beginning the layers of healing are described in decent detail, with the Deadlock dependencies shown on some other posts. Useful info is posted throughput that thread as people had things to say.

    If you go and make a list of all your symptoms on each of those pages before glutathione and after glutathione, plus include whatever symptoms you had and now have that are not on those lists.

    After you read the material we will be able to talk better. Many of your question may well be answered or reconceived after you read these pages. It's complicated. However, 100% of these things are based on people's responses. The hypothesis and theories came about because of the results. Two of the main pathways are pretty well known, the MeCbl-Methylfolate branch (ALS, MS, SACD, ME, FMS, CFS) and the AdoCbl-LCF (ALS, ME, FMS, CFS, Parkinson's) . There are other pathways and as you see, there are some items that appear on both. Now all this "arranging" is very much a work in progress.

    There is a relatively easy way to demonstrate that glutathione flushes the active b12s in serum out in the urine very quickly. Inject 5 mg of MeCbl for several days without any glutathione in your system and with Metafolin. Observe your urine. Increase the dose until a just noticeable coloration occurs (towards orange if normally yellow, towards light pink if clear). Then take a large enough dose of glutathione. Then observe the coloration of urine.

    I'll put my comparisons here for all to see. All injections were MeCbl of 20mg/ml concentration.

    On folic acid - 2.5mg injection sc makes a just barely noticeable coloration in a few hours.
    On Metafolin - 4.4 mg injection sc makes just barely noticeable coloration in a few hours.
    On Metafolin - 4 x 7.5mg or 3x 10mg daily injection sc, makes 24 hr unmistakable tint in urine, mid-orange or medium pink
    On Metafolin - 3x 60mg daily injection sc, dark orange urine

    Glutathione On Metafolin 4x 7.5mg injection sc daily urine dark red or clear magenta. As I injected 4 times a day and found even that made no difference. It would all be in the urine. I got the same MeCbl symptoms starting on day 3 as when I go off it entirely for 3 days. It was redder than with 180mg a day injected. It was redder than 100mg single dose injection.

    The only thing close was an EMT who tried a 500mg IV infusion described his urine, "Lurid". B12 is much more a magenta than red. Of course magenta and yellow make red. It almost looks like blood except it is clear whereas diluted blood is translucent.

    This clearly demonstrates what glutathione does to B12, flushes it from the body much faster than with any folate or nothing. It flushes on the order of 100x as much b12 into the urine than is normal. That causes deficiency so severe that methyltrap starts in hours. It takes not complicated biochemistry or enzymes.

    It is exactly like cyanide and nitrous oxide, it oxidizes the MeCbl or AdoCbl into a form that is rapidly excreted upon contact. One researcher MD told me on the phone, "glutathione is too dangerous to take in any way".
     
    Last edited by a moderator: Dec 4, 2013
    Looking for Answers likes this.
  5. Looking for Answers

    Looking for Answers

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  6. Freddd

    Freddd Senior Member

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    Both b12s are required for most people. Either one can deadlock hundreds of processes. All of this is explained in detail on the thread I referenced.

    TMG is most useful after you have started all four of the Deadlock quartet. TMG can actually take a lot of the edge off the LCF excitatory startup.
     
  7. finalgates

    finalgates

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    if all supplements are in place and you have potassium and folate sufficiency and have dizziness this is healing?and you have to wait a few months to stop?i diddnt have any dizziness before deadlock quartet and essential supplements.
     
  8. Freddd

    Freddd Senior Member

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    Hi Finalgates,

    There are so many different "dizziness" things. It can be purely neurological, it can be inner ear, it can varying feedback from nerves in the feet. A lightheaded and/or dizzy sensation is not uncommon. If you stand still and shut your eyes, do you feel like you are going to fall over? What about walking with your eyes shut or in the dark. Somebody watching you can see a lot. Even touching something with a hand can give you a point of reference that stops some kinds of dizzy. So can you describe better? Many sensations are transitory while the nerves themselves, the sensors, change.
     
  9. finalgates

    finalgates

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    no i dont going to fall over.and i walk in a straight line in the dark.dizzyness is in my head and is more intense in the midday.in the afternoon gets better.it has and a high feeling like marijuana drugns.but dizziness too.
     
  10. Freddd

    Freddd Senior Member

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    Hi Finalgates,

    That really sounds like the neurological changes one gets during healing. Sometimes the balance between AdoCbl/MeCbl can make a difference. Chart it every day and see what is steady and what changes day by day and even the pattern within the day. I found this kind of diary very helpful in knowing what was going on. I could see clear changes in the right direction in a month that were not visible in day to day memory comparisons. Our memories are so frail in this and it is so easy to forget most of the changes. Looking back 11 years I have trouble now believing how sick and miserable I was, how disabled I was. I was reasonably euphoric for the first 9 months or so despite all the increased awareness of muscles and nerves damage.

    If anything, I am a genuine data nerd. I made a living for a lifetime collecting and analyzing data. It was that which allowed me to solve my way out of it.
     
    Last edited: Dec 8, 2013
  11. finalgates

    finalgates

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    thanks man.i will report my news.
     
  12. Moshi

    Moshi

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    Hi! I was diagnosed with ME two years ago and started an active B protocol about three months ago. Since then I've had my highs and lows but I believe I am improving in general, perhaps close to 20% improvement so far! However, I recently got worse again but think I may have just solved the situation with additional niacin and more potassium, too early to tell for sure. Since my current protocol is a mix of Fredd,RvK,Yasko and Lynch, it's a bit confusing, and I would really appreciate input and comments from all the clever folks in this forum, to find out if something's seriously wrong with it....here it goes (daily amounts):

    Methylcobalamin sublingual tablet 1 mg
    Methylcobalamin liposomal mouthspray 500mcg
    Dibencozide sublingual tablet 4 mg
    Hydroxycobalamin nasal spray 2mg
    Methylfolate 800mcg (as part of MetabolicMaintenance B-Complex)
    Methylfolate 150 mcg as sublingual drops (methylmate)
    SAM-e 200mg
    Alcar Fumarate 855mg
    D-Ribose 5g
    TMG 600 mg
    Ubiquinone 200mg
    Nicotinic acid 100mg

    I also take, multi, maganese, molybdendum, iodine, omega 3, lechitin, zinc, selenium, vit C etc etc etc.....
    But is there something I should really add or delete from the list, perhaps something crucially wrong...? Suggestions warmly welcome!
    My overall functionality is improved but I still crash badly in the afternoons and evenings, my knees really weak and my head so muddled....I feel I need to tweak the protocol but don't know exactly how....

    Thanks so much!!
     
  13. AngieLynn

    AngieLynn

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    Hi Fredd and others,

    Thanks so much for your answers. I've been reading your posts Fredd, and though I have a ways to go, I have a couple follow-up questions.

    Fredd, someone asked you the following:

    I notice you seem to recommend a 1:1 ratio for mb12 and adb12. Is there a specific reason for that?

    Fredd you wrote:

    Yes. It is below the 3:1 Ado:Me ratio at which neuropsyc effects appear as artifacts of the ratio in people who otherwise had no indication of such.

    Here's my question: Fredd, I just purchased the Seeking Health version of b12. It has the following:




    Vitamin B12 (4,000 mcg as methylcobalamin, 1,000 mcg adenosylocobalamin)

    5,000 mcg

    Fredd, is this going to cause neuropsyc effects?

    I couldn’t find an adenosylocobalamin b12 product that doesn’t have folate and is gluten free. I’d been taking Solgar sublingual methylcobalamin, and I already have the methylfolate in a separate product. I wanted to add in the adenosylocobalamin separately. I couldn’t find it as a separate product – it’s always in combination with the methylfolate and methylcobalamin. I find it’s always best for me to try things one at a time. The closest I could come was getting this Seeking Health product.

    But now I’m concerned I wasted my money by buying a product with a bad ratio. Did I? If so, can you advise me on what to get? It must be gluten free. Thanks.

    And here's a question for my sister:

    She’s on products for her brain with the Parkinson’s (NeuroReplete, and CysReplete) that have amino acids, but there’s also folic acid in them. The label says “folate” but I called and it’s folic acid. You can see them here:

    http://www.kalishresearch.com/patients/store_misc.html

    The products seem to be helping her, but she’s also got the homozygous A1298C MTHFR mutation. I suggested to the doctor that we deconstruct the ingredients and purchase products that include all the vitamins, but that we change the folic acid to methylfolate. The doctor said that if we do this, the lab that tests and makes recommendations for dosage of the vitamins will no longer work with her. They only work with patients taking the cysreplete and neuroreplete. This sounds fishy to me, but it’s helping her so I don’t want to stop it if we can get around it.

    She’s on 2 capsules of the Neuroreplete and 6 capsules of the cysreplete right now, getting 998 mcg of folic acid a day.

    Can I get her on the methylation supplements despite the fact that she’s on these products? Is the folic acid a problem for her? I've read on other sites that with the A1298C MTHFR mutation, it's not damaging to take folic acid, but I would appreciate your input.

    Thanks for your help!!!
     
  14. AngieLynn

    AngieLynn

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    Fredd, I have one other question in addition to the above. After reading your recommendations I ordered Dr's Best L-carnitine fumarate (855mg). I see you say to start this before anything else. I've already begun to get on the mb12 and methylfolate. Here are my questions:

    - Should I stop increasing those and just start on the L-carnitine fumerate?

    - And should I wait to add the adb12 and more of the methylfolate and mb12 until I get to a full capsule of the L-carnitine fumerate

    Also I was wondering why the L-carnitine fumerate needs to be titrated up? Does it also get the detox pathways going like the b12's and the methylfolate?

    Thank you!!!!!
     
  15. Freddd

    Freddd Senior Member

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    I suggest estavbloishing Methylation startup with 100+ mcg of MeCbl and AdoCbl absorbed each (at least, since the effect is NOT linear, 80% of all the body healing that can turn on does with a couple of hundred absorbed mixed active B12s. One ENZY tablet and part of an Anabol Dibencoplex capsule along the lip and gum for 1-2 hours is quite sufficient until potassium and L-methylfolate are titrated to full need at that level, then tolerate the LCF.


    Also I was wondering why the L-carnitine fumerate needs to be titrated up? Does it also get the detox pathways going like the b12's and the methylfolate?

    The LCF is the only one of the Deadlock Quartet where the dose drives the quantity of healing. With B12s and folate there are at least 5-6 or more levels of healing, each one of which starts independently of the others when the full requirements are available. See LEVELS OF METHYLATION AND HEALING http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

    LCF, if it is what methylation is deadlocked on, will cause low potassium and donut hole paradoxical folate deficiency/insufficiency which is usually called "detox" just as glutathione detox equals paradoxical folate deficiency and so does NAC "detox". Of everything I have seen called detox, better than 9 out of 10 times it resolves with potassium and/or Methylfolate. "Detox" has so many meanings it is meaningless. The docs immediately go deaf when they hear that word and won't hear a thing you said before or after.

    So let's consider what carnitine does. First, some people have to have LCF, about 90% of us here with these for whom it makes a difference. About 10% have to have ALCAR. It transports fats to mitochondria. It, by demonstration on me and others, causes proliferation of mitochondria in conjunction with the other 3 items. It causes muscles to grow back. It causes osteoblast proliferation strengthening bone. It cause neuroblast formation, encouraging neuronal healing and growth. These are essential to healing and causes demands on Methylfolate and potassium as it encourages new cells to grow as well as more mitochondrial density producing more ATP.

    I started with a 500mg dose and had to be peeled off the ceiling. I was quite deficient. It was key in my taking off 85 pounds of water and healing all levels. A person who has no deficiency will have no obvious reaction. It was almost made a vitamin but wasn't because some people can make enough of the right kinds. Even if they had it would have been ALCAR and most of us would be out in the cold anyway. I backed off to 128mg. After a few months I could increase to 250mgl, then a few more months 500mg. That turned out to have peak effect and 1000mg did nothing more so I backed off to 500. If a person has anxiety and is overly risk adverse they may have a specific type of hypothesized damage to the limbic system in the brain and then they have hyper responses to less than 1mg of LCF. Such folks might need to microtitrate starting at 100mcg with Jarrow liquid carnitine. It really has nothing at all to do with detox and everything to do with neuronal damage from deficiency and restarting damaged or inflamed nerves with ATP generation which also is needed for dopamine synthesis.
     
  16. AngieLynn

    AngieLynn

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    Hi Fredd - Thanks so much for the answers! I just want to be sure you saw my questions just before this post you answered. I had two other questions for myelf and my sister. I wrote it Saturday at 12:56 PM. I think this might link to it:

    AngieLynn, Saturday at 12:56 PM

    I appreciate your support!

    AngieLynn
     
  17. Freddd

    Freddd Senior Member

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    Hi AngieLynn,

    Check the symptoms below. If healing is turned on at all she might have group 1 symptoms from low potassium. If she had folate insufficiency then she will have group 3 symptoms. It possible to have both.

    The MeCbl/AdoCbl you bought is just fine by ratio., However it may not be effective. Right now Enzymatic Therapy is by far the most effective MeCbl I know of for neurology. The Anabol Naturals Dibencoplex is the most effective AdoCbl I know of. The 5 star b12s are available at www.iherb.com and a referral code of RED843 will get you $5-10 off the first order depending on total.

    Neuroreplete is very little of anything: unspecified folate is folic acid, 5HTP is accused of causing cardiac fibrosis
    Vitamin C 500 mg
    Calcium 110 mg
    Vitamin B6 37.5 mg
    Folate 200 mcg
    L-Lysine 250 mg
    5- Hydroxytryptophan 150 mg
    L-Tyrosine 1500 mg

    Selenium 134 mcg
    Folate 133 mcg
    L-Cystein HCL 1500 mg
    Other Ingredients: Rice Flour, Vegetable Based Capsule, Silicon Dioxide, Magnesium Stearate.
    So, more folic acid, 4x200mcg + 2x133 = 1066mcg of folic acid, enough to paradoxical folate deficiency. Enough to cause neurological damage called Subacute Combined Degeneration without any MeCbl. . Further the l-cycstein could act as NAC in forming glutathione which could cause methyltrap and SUBAUTE COMBINED DEGENERATION. These formulas are neurologically dangerous in my opinion. I would stop them immediately if I were taking them and start on ACTIVE b12s and L-methylfolate immediately to try to correct the damage. She likely has groups 2 and 3 of symptoms

    I would get her off these immediately and replace with something that could help her heal. Folate without MeCbl is DANGEROUS to ones neurological health.

    Version 1.2 12/08/2013

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

    There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

    IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

    Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

    Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

    Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


    Group 2a - Both

    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


    Group 2b – Either or both

    Headache, Increased malaise, Fatigue


    Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

    These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

    Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.

    Old symptoms returning

    Angular Cheilitis, Canker sores,

    Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

    Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

    Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


    Longer term, very serious

    Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily


    Group 4 - Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
     
  18. Moshi

    Moshi

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    To Fredd and others - bless you for taking the time and effort for giving such valuable advice in this forum!
    My question before was way to broad to deserve an answer, I will post more specific questions -

    1) the ratios, once again.....the ratios between MeCbl/AdCbl/MeFolate + cofactors are of course individual and must be determined by trial and error, right? However, what are the recommended ratios to start out with?

    2) is it a bad idea to mix methyl- and hydroxycobalamin in a protocol (as Yasko sometimes advises according to genotype) if so, why?

    3) I take my protocol supps early in the day, before 10am, in the early afternoon I still crash badly; weak knees (feeling that kness cannot support my weight) fatigue, brain fog, general neuro weakness, headaches (different types including local stabbing ones) I kind of go from beeing slightly wired during mornings to beeing more or less incapacitated in the afternoons/evenings....I have upped potassium gluconate to about 600mg-1g/day....perhaps I need more? Any other suggestions?

    4) Since I know that my two daughters (age 6 months and five years) have inherited part of my +/+ MTHFR etc, I am considering giving them both methylfolate, like 100-300 mcg daily, in the form of methylmate drops perhaps, should I do this?
     
  19. Moshi

    Moshi

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    One more thing: it's exciting to learn that OMI +collaborators intend to launch a clinical trial of an active B protocol in relation to the MTHFR mutation! Finally more recognition! Personally I believe that avtive B/methylation protocols in combination with safe and effective chelation methods (yet to come!) will be the answer. At least for most people with methylation defects.
     
  20. Freddd

    Freddd Senior Member

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    OMI? Oakland Military Institute? I would like to learn about this.
     

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