The 12th Invest in ME Conference, Part 1
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Treating severe b12 deficiency

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Martial, Dec 20, 2013.

  1. Martial

    Martial Senior Member

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    Hey everyone, after making an initial post on this site I have been to many doctors, running many different tests..

    Recently I have been having issues with severe mental impairment, and neuropathy pains, weakness, trouble walking, blurred vision and the like... Luckily the more severe neurological symptoms only kicked in the past week though they were notable things for a bit of time, I also had extreme insomnia and was slipping more and more into a psychotic state.

    I had waited a bit to get a test confirm but thought I don't want to risk permenant issues, so I am treating it still in early stages..

    I went out and purchased Methyl B12 and Methyl Folate.. Today I used 2,000 Mcg of b12 and 400mg of methyl folate. I am not too sure of dosage protocol but I am just doing something early so I don't risk permanent damage before getting more tests and possible shots. I was gonna bump the methyl b12 to 5000 mcg for at least the next few days taking it on an empty stomach, I was wondering how much methyl folate to take aside it.. Also I know it depletes potassium so gonna take that on the side..

    My main concern is that using dissolvable lozenges penetrate enough into the CNS to reverse the neuropathic damage? Or would I need injectable shots? I figured regardless it would take at least a bit of time to go through the process and convince a doctor to prescribe me methyl b12 shots regardless so was gonna use this in the mean time..


    Thanks for any help!

    The benifits so far have been a huge gain in energy again even with severe sleep deprivation!

    and a paradoxical reaction of shooting pains and weird nerve changes

    Is there any supplements or medications I should avoid while using these supplements, and any possible dietary changes?

    -Todd
     
    Last edited: Dec 20, 2013
  2. Helen

    Helen Senior Member

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    Hi Todd,

    With your story a doctor should give you methylcobalamin injections. You shouldn´t have to be your own doctor with these severe symptoms that are typical. You gave yourself a good start :). I think you should try to add Dibencozide too (Adenosylcobalamin see iherb.com). Continue with the tetrahydrofolate too. Nobody knows the dose you really need. Trial and errors...A 23andme test might give a clue of the impact of genetics.

    Labtests might not show any defiency as you have taken B12. But homocysteine and MMA are well worth taking.

    Best,
     
    Radio likes this.
  3. Freddd

    Freddd Senior Member

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    Hi Todd,

    The shooting pains etc are the nerves starting to come back. Great! Now get the rest of the things you need and be ready for low potassium. Then AdoCbl and L-carnitine fumarate will also help. Carnitine helps neuroblast formation and energy getting the mitochondria going. It stimulates all sorts of healing

    I've been through it all. Enzymatic Therapy is the only brand of MeCbl I can suggest for CNS healing currently. Read the http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

    The Enzymatic therapy MeCbl needs to be held under the lip for 45-120 minutes in order to get 10-25% absorption approximately. If you get methylation startup on about the third day you could have mild to severe low potassium. Be prepared. If you wake up screaming in pain from spasms in the middle of the night you won't be able to go get it. You will also likely have donut hole paradoxical folate deficiency. You can end up in the ER for the potassium or, dead in generally prolonged cases.

    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 dev
     
  4. Martial

    Martial Senior Member

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    @Freddd

    Hey Fredd thanks so much for the response! Yes I had all the re booting come on, I am wondering though it feels I really need some actual b12 shots to start off again, don't think these lozenges alone are gonna bring me back from severe deficiency... What is your input on that?

    Also I definitely felt the dangerous drop in potassium as well.. Sudden bouts of muscle weakness and heart rythm changes... The scariest feeling was having my heart rate drop so low it felt like my body was shutting down lol..
    I purchased potassium chloride supplements to off set any adverse risks from this.

    So far I have used methyl b12 @1,000 mg taken twice yesterday and today, as well as methyl folate at 400mg yesterday and today.. I also purchased Niacin non flushing to help with possible over methylation, as well as Magnesium Atp, and Zinc gluconate with pyridoxal 5 phosphate b6 for possible pyruthingy however you spell it lol...

    I am also going to purchase the 5000mg methyl b12 and use those for a few months to really boost recovery quicker..

    Also interesting to note, I feel like my entire life I have always had symptoms of undermethylation though my personality pointed to symptoms of both under and over methyl... I think though you obviously can't define someone solely on how their body processes nutrients so thats something to skew it a bit lol...

    Thanks for all the help again!
     
    Last edited: Dec 21, 2013
  5. Freddd

    Freddd Senior Member

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    Hi Martial,

    The only 5 star MeCbl that I am aware of is Enzymatic Therapy B12 infusion. You need to know the gold standard before you try anything else as I have only found 2 for sure 5 star brands in 11 years, and one remains. Read the "95% reasons why b12/folate therapies don't work". It's on that Levels Of methylation and Healing post.

    You really need to read that thread. There are cautions and alerts. CoQ10 can cause dangerously high blood pressure within an hour of taking for perhaps the first year.

    Over and under methylation is usually really out of balance. For instance a lot of "overmethylation" symptoms are often low AdoCbl symptoms. You need to get all folic acid, folinic acid, folinate, etc. out of your diet and supplements as they can cause paradoxical folate deficiency. No NAC, glutathione or whey. The can cause problems via methyltrap.
     
    Last edited: Dec 21, 2013
  6. Martial

    Martial Senior Member

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    @Freddd

    I will check out the thread thanks for the input again, funny enough I already bought the b12 brand you had mentioned... After reading through the thread though I am having a hard time finding the recommended supplement protocol names as most are abbreviated... Though wow!! THat is an amazing thread and so informative, rest assured I will use this therapy for a long time coming!


    I know the supps suggested though are L Methylfolate, L Carnitine Fumarate, Adenosylcobalamin..

    I have two of the recommended sups, will buy the rest tomorrow..


    TO heal my CNS system I will use the following

    MeCbl & AdoCbl 10000mcg absorbed 3 times daily & L-Carnitine Fumarate & L-methylfolate 3200+mcg (titrated to sufficiency) will start correcting, 30,000mcg daily diffusion level needed.

    IS this a good plan for me?

    I feel like i am very much at the bottom end of total collapse from b12 deficiency and definitely have nerve damage, is there any risk into jumping into this high of doses at first? I will remove all methyl traps from my diet as well of course..

    Also 10,000 mcg 3 times a day is the equivalent of a direct muscle injection shot as I know it so that is very helpful!

    I do not see many lozenge type supplements that offer this high of a dose though... Are the recommended needs based on intra muscular injection liquid? or is the MeCbl, and AdoCbl both meant to be used as a lozenge?

    Thanks again for the help!

    Also I know this high of doses will lead to severe side effects, any things I should use to counter act reactions? Like potassium depletion for example, what can be used? Potassium Glucosane?


    Also is there any other recommended sources for the MeCbl and AdoCbl.. The only things I have seen offer MeCbl at only 1000mcg at least from the recommended brand, and all brands of AdoCbl also have folic acid in them...

    Better yet good source to purchase all the trusted supplements? lol
     
    Last edited: Dec 21, 2013
  7. Martial

    Martial Senior Member

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    As an update today I had taken 10,000mcg of Methyl B12 which resulted in a severe rash and hives that showed up in my face, nose, burning ears, and a rash on my chest and neck.. It went away completely after a few hours but I was planning on using 2 more 10,000 mcg doses today to absorb the equivalant b12 of one shot, Since I was not able to get in touch with any doctors around that prescribe or give it out yet... Also I had immense feelings of agitation that came on a few hours after the 10,000mcg dose...

    I woke up and felt very weak having a hard time moving my muscles, with spasms, tingling sensations, and a hard time staying awake... I think this is just the low potassium so I treated it with potassium Gluconate 595; two pills, and a hardy diet of potassium to offset the symptoms..

    I am going to look into methyl b12 as shots as I feel it would be easier and maybe less reaction then taking mega lozenge doses through out the day... I had 5000 mcg and used two pills and plan on taking two more doses of two pills today..


    Is there any potential risk of trying to take 2 more 10,000mcg doses of Methyl b12 today? The only thing I am worried about is a worse allergic reaction, or severe behavioral changes... I used Niacin as well to help with the reaction but I don't know how much it helped as I still had those changes occur..

    @Freddd

    should I adjust and titrate doses until my body better handles it.. I figured the adverse reactions would dwindle in time when the body is used to it.

    The only thing I want to do as of now is at least treat this severe deficiency then when my levels are better adjusted go onto the protocol with smaller dose protocal.. Using Methyl b12 to treat the long lasting deficency with some shots and lozenges as needed, and maybe with or without methyl folate.. I feel if I tried using the entire CNS high dose protocol right now to treat this deficiency I would have far more severe of a reaction then I already did and dont want to risk long term damage from reaction, I want to start slow and maybe choose some easier handled amounts for the methylation system re boot. After I get this deficency under control and more stable levels in the system .

    Would this all sound like a good plan? I feel like I am understanding more, and more the process and how it works but am still relatively new and inexperienced to this..

    I also am still going to purchase the other recommended supplements from the protocol from the site recommended.. Just figured I would work some damage control for now as I am not able to get the proper doses and supps within the next few days.

    The only thing I figured as of now is at least use the 30,000mcg of 6 methyl b12 5,000 mcg lozenges a day to get the system running again, then adjust to easing into a good methylation protocol from there. Would it help to add methyl folate at 450mcg as well into this?

    I mean realistically in the short term my available immediate supps are Methyl b12 at 5,000 mcg and Methyl Folate at 450 mcg, maybe L Carnatine, but I will not be able to get Abocbl until ordering from Iherb.. Plus the L Carnatine will not be in the recommended dose...
    I guess my biggest question is to treat this deficency as damage control in short term what could I try with the above mentioned options?


    I would still like to try and treat the CNS system with its protocol I just can't get access to all the needed amounts of supplement in that short of time to treat current problems. I am however very excited to jump into the protocol and start at a dose of supps my body will process well... Keep in mind I don't need the process to be peachy, I don't mind painful and hard changes as a result of healing.. I just want to be sure to differentate between what is good painful re booting, and bad painful reaction which could lead to damage, such as extreme potassium shortage..

    Also does this protocol work as well for someone that doesn't have ME/CFS.. I think I could have a methyl blockage obviously but do not have ME or CFS.. I don't know if it makes a difference or not, as it sounds from what I read that EVERYONE in society is running on extreme methyl blockage right now lol
     
    Last edited: Dec 21, 2013
  8. Freddd

    Freddd Senior Member

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    Hi Martial

    The Anabol Naturals Dibencoplex has no folic acid and works well. One can start with 1 mg of each ENZY MeCbl and Dibencoplex by shaking a little out onto a spoon and putting under the lip. The actual amount you need will depend upon your own body and titrations. At that dose of 1mg and 1mg, you can absorb about 20% give or take some by holding under lip as long as possible. That typically will give 80% or so of all the healing. The reaction can be intense. Then as it fades, one titrates to keep the "neurological brightening" going. That is the initial flag of healing. And then the potassium and folate titrated to stop induced deficiency symptoms. Later LCF is added.

    The way you are going about things is dangerous. Low potassium can kill you if not taken care of.
     
  9. Martial

    Martial Senior Member

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    @Freddd

    I did not realize, i will make sure to cut out the excess vitamin B at this time then.. have only taken in the 2,000 on day one, 3,000 on day two, and 15,000 today.. As well as added methyl folate. at 450mcg both today and yesterday.

    I did however add a ton of potassium in my diet and took some potassium supplements along with it..

    I will do what you suggested and use those recommended doses, how much potassium and folate titered should I use for symptoms? And what type of potassium?
     
  10. Freddd

    Freddd Senior Member

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    Hi Martial,

    Food based potassium has a serum peak 14 hours after consumption. Tablets with water on empty stomach can provide relief in 30-60 minutes. Get stable on 1 or 2 or 3mg of Enzy MeCbl, it really doesn't matter that much except that Enzymatic Therapy is qualitatively superior MeCbl. The Anabol Naturals Dibencoplex is also generally superior for AdoCbl. Star those with `1600mcg or so of Metafolin and then get potassium titrated and Methylfolate titrated and healing noticeably started and doses stable. The basics are all needed. Then after you are stable, titrating LCF is next. And how that is done depends on how this first part goes. It is all responsive to your responses. This is critical for you to heal safely. You have noticed those nasty potassium symptoms. They get worse if not taken care of.
     
  11. Martial

    Martial Senior Member

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    I understand will do fred! the supplement form of Methyl Folate I have is calls it Methyl Folate is that the same as Metafolin? I will use the recommended dose of what you mentioned as well ,got to go out and purchase the Anabol Naturals Dibencoplex for AdoCbl as well. Working on stabalizing Methyl Folate and potassium as well.. adding LCF down the line. How much AdoCbl should I take it shows up at 10,000 mcg which is very high! lol
     
  12. Freddd

    Freddd Senior Member

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    When I switched to it started with 1./3 a capsule, about 3.33 mg. The dose might be very powerful or might not make a noticeable difference. However, it can also start a lot of healing and increase need for methylfolate and./or potassium, so adjust appropriately. Metafolin is a brand of l-methylfolate that is a specific form that is stable. There are a couple of other makers of variations of methylfolate. I am working on a plan for a study for us here to do for the 3 brands comparatively so that we might have some answers about equivalence.

    How the LCF is started depends on how these other things go.
     
  13. Martial

    Martial Senior Member

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    Should I just eye ball how much AdoCbl I can use and put it in a spoon as suggested then? I saw the brand name that offered Metafolin @800mcg, didn't realize I should have purchased that one instead as it was also offered in the place I bought the methyl Folate, will my specific brand work well enough for now?

    Gonna be at least a few days to add in the AdoCbl

    I will wait on the LCF after this current stage of healing and go from there then.. Also adding plenty of extra potassium for depletion that may occur.. How long should I keep this protocol going?
     
  14. Freddd

    Freddd Senior Member

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    Hi Martial,

    In reading the work of some doctors with some degree of success with neurological healing they say generally that 5 years of uninterrupted healing are needed to really heal neurology. My experience is that they things that heal all the way only come back with new deficiency and re-injury. However partially healed things being maintained in remission comes back in days. Then there is the problem of why deficient in the first place. Chances are good that you are in it to some degree for the rest of your life. The things I was 100% on five years ago still are 100%. The things that were holding between 50% and 99% are still holding but with variations. Different areas are numb, different areas hurt but the amount of damage is similar with variations.
     
  15. Freddd

    Freddd Senior Member

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    Hi Martial,

    Food based potassium has a serum peak 14 hours after consumption. Tablets with water on empty stomach can provide relief in 30-60 minutes. I find that potassium glutamate tablets are easiest on my stomach. A certain amount of potassium chloride can be used as a salt substitute in food.
     
  16. Martial

    Martial Senior Member

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    I understand... I did not have neurological effects until the past maybe few weeks though so since its been under 6 months I feel its still a good prognosis of recovery for basic function... I don't mind numbness so much, just don't want to have permanant muscle weakness as weight lifting is one of my favorite things to do lol ... I guess time will tell what happens with what regardless, I feel good about catching it early though. Though I am having a lot of reactions from potassium deficency which closely resemble the issues I had from B12 deficency lol, a lot of muscle twitching, spasms, cramps, weakness that comes and goes... The potassium pills I have are 595 potassium gluconate... it says 595 mg but it only offers 99mg of potassium which I find strange, it also says not to exceed one tablet a day which seems odd as well... As far as I know it gluconate is just a salt so you would probabaly have to take like 47 pills to overdose on it... Unless I am missing something...

    The other issue I am having is differentating between hypo and hyperkalemia... I took at least 5 of the potassium pills today, and had two coconut waters which is 610mg of potassium, and two yams which isaround 650mg of potassium, and the rest from general diet... I just don't have any reference for how low my potassium might have been from the b12 kick up, and if I may risk over doing the potassium.. I find this to be quite a confusing spot. I am just having a hard time with what is what, like what could be re activation of neuropathy, or what could be the effects of potassium deficency, or possible hyperkalemia though that seems to err on unlikely.. I am going to go to a specialist on monday to run some basic testing though, that will help give me reference on all of this..


    Doctors have not been too much help but I am trying to do this as safe as possible..

    If I have to be on some kind of protocol for my life thats not so bad, at least it gives me the benefit of keeping a well maintained body and health no biggie... just gotta find a way to keep it cheap lol
     
    Last edited: Dec 22, 2013
  17. joshi81

    joshi81 Senior Member

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    Martial... are twitches one of you regular symptoms??? because i have twitches (fasciculations) every day since everything started 7 years ago. Infact at first i was diagnosed with Benign fasciculations Syndrome then as i had a lot of other symptoms that diagnose did not fit me anymore.
    So if in your case twithces shows only when you have potassium deficiency i should assume i have a sort of chronic potassium problem????? @Freddd i would apreciate also your opinion ...
     
  18. Martial

    Martial Senior Member

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    The twitches happened few months back while I was over exercising and working strange hours however no tingly feelings or other pain related issues I feel it was probably just a result of over exertion though.. though recently after two rounds of antibiotics i went to the gym or other places and would suddenly get painful cramping twitches, shooting pains all over, this all happened past couple weeks, also notably sicker and cognitively declinging.. I did research and found the answer was b12 deficit, I also had a lot of psychiatric symptoms as well... Then the potassium levels dropped as soon as I started treatment and it caused its own painful cramping, twitching and the like lol...

    Yes both b12 deficit AND Potassium deficency can do this, as well as calcium deficiency, and magnesium deficency...
     
  19. joshi81

    joshi81 Senior Member

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    thnak you martial i asked you because fasciculations well i have them every day...they are not pain ful they are more like the classic eye twiching but all over the body. They are not considered by me a symptom because they are not painful or they do not create discomfort but i just was thinking that they could be a sign of something, maybe potassium deficiency (cronic9 who knows...
     
  20. Martial

    Martial Senior Member

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    Possibly have you checked your b12, potassium, magnesium, and calcium levels? I would recommend an active b12 test to see exactly how much is being used by your body... You can run risks of permanant damage if things go untreated for too long.

    I on one hand am almost questioning if I should check myself to the hospital right now for extremely low potassium from the uptake of recent b12.. My heart is doing wierd things...
     

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