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Cannot tolerate oral B12 – causes shortness of breath and tachycardia. Why?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by LynnJ, Mar 12, 2014.

  1. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    I guess you simply get folate deficiency because it's used up by the b12. I find I get anemia symptoms, like weakness, dizziness, headache, shortness of breath, tachycardia, anxiety aso.

    Ben Lynch also says that b12 becomes a free radical without sufficient folate.

    At the moment I seem to need more folate than b12, but you are going to have to experiment to find your optimal level.
    Gondwanaland likes this.
  2. LynnJ

    LynnJ

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    Interesting...

    I've seen some threads here with people talking about some very nasty side effects they get with folate, so I've been a little wary of upping my dose to 1000mcg, much less 5000mcg.

    It might be a coincidence, but I thought I felt a little more sore on the days after I took folate. Based on the research I've done, though, folate helps repair mylein sheaths, so... Definitely could just be a coincidence.

    My main problem with B12 is a racing heart and shortness of breath. I've been trying to up my potassium intake, but I never thought it could be connected to folate as well.
    Last edited: Apr 15, 2014
  3. Helen

    Helen Senior Member

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    [quote="adreno, post: 453067, member: 5082".
    Ben Lynch also says that b12 becomes a free radical without sufficient folate.
    ...[/quote]

    Interesting. Could you tell where he wrote or told this?
  4. adreno

    adreno 3% neanderthal

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    I don't have the link handy. It's discussed in some other threads, and one of his videos.
    Helen likes this.
  5. LynnJ

    LynnJ

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    May I ask how much magnesium people here generally take? I know everyone's different, but a ballpark range...? I've been using Slow-Mag, a brand that was recommended to me on another website, but it's not a megadose or anything (I take two a day per the instructions).

    With all the pain I'm having, I'm wondering if I should up my dose, even if the pain isn't due to magnesium deficiency.

    I wish I had kept track of how long it took for my symptoms to clear up last time. I'll be curious to see how this plays out... The clavicle/shoulder/neck pain is just killing me. If I could get some relief from the Naproxen or muscle relaxers they gave me (at least while I'm at work), it wouldn't be so bad. But maybe it's nerve pain rather than muscular pain, as they're basically useless.
  6. ahmo

    ahmo Senior Member

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    LynnJ, I'm currently taking typically about 1gm Mg citrate AM and PM. When I'm detoxxing w/ coffee enemas, it's more, especially straight afterwards. I take it in footbaths. When I increase folate, I tend to need more also. I strongly recommend self-testing for supps. It's what keeps me progressing without needing to figure things out analytically.
  7. LynnJ

    LynnJ

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    Self-testing is definitely key, but I like to have reference points. I mean, before coming here and talking to people about dosages, I would have never known that 20,000mcg of B12 per day was okay!

    I took 3 of the methylfolate 800mcg pills today. I could swear that I'm feeling more sore this evening. I just don't know how to handle this folate. Some people recommend starting slow, while others say that's the WORST thing you could do, and that you should immediately be taking 1500-5000mcg per day with B12.

    I'll keep experimenting and reading up on threads here, but I just hope I'm not doing more harm than good.
    Gondwanaland likes this.
  8. ahmo

    ahmo Senior Member

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    How much were you taking before the 3x 800mcg today? The thing is to not increase too fast. It's always possible the increased pain is start-up. But you've been describing muscle, rather than nerve pains, I think.

    That certainly sounds like K+. In the dose ranges you've been taking, I think it would be hard to do more harm than good. cheers, ahmo
  9. Gondwanaland

    Gondwanaland Senior Member

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    So perhaps that is exactly what is going on with me...
    Tomorrow starts a 4-day long holiday here and I wouldn't like to go to the ER again... In 2011 I spent this holiday in hospital due to thrombosis...

    Today after lunch I will start my low dose B complex and wonder if I should restart the methylfolate 200mcg or take the folinic acid 300 mcg. Gotta practice self testing and learn to trust it...

    izzy
  10. LynnJ

    LynnJ

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    800mcg, 1600mcg on one or two days I think.

    I'm no longer sure. Sometimes the pain is very sharp and shooting, and feels like it's burning a little as well. Occasionally the backs of my shoulders almost feel like they're sunburned.

    I feel cruddy today. I woke up in the middle of the night feeling fairly dizzy. I still felt dizzy when I got up in the morning and now I've got a fair amount of nausea. I just feel nervous for some reason, and extremely tired.

    I'm seeing a lot of posts here saying if you try to take small doses of folate, you risk paradoxical folate deficiency. Some go on to say that sloooowly upping your dose ISN'T the way to go; that low doses can cause more harm than good. They say you want to start off with a sizeable dose and then increase as needed. Hence my confusion.
    Last edited: Apr 17, 2014
  11. whodathunkit

    whodathunkit Senior Member

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    @LynnJ, my $0.02 is that since folate isn't working for you this way (slow way), why not try the other way (increase quickly, fast way) to see what happens?

    I got sick from too little folate. I was taking 800mcg/day for about two weeks, and then got really sick. That was what provoked me into implementing Freddd's full protocol. When I added a lot of folate quickly I felt better quite fast. I did not get completely well but the improvement in just a couple of days was marked and a great relief.

    Jumping in with both feet may not work for everyone like it did me. I'm not as sick as some around here and probably not as sick as you. I had an excellent first reaction to my first injection of methylb12, for example. I got into the rest of this because it became obvious pretty quickly that B12 wasn't the end of my journey, but I never had the problems with B12 or folate that you've had.

    But jumping in has worked for a surprising number of people, given what the experts generally have to say about increasing folate quickly.

    @ahmo has chimed in and her advice is always stellar. Hopefully @stridor might chime in, too...he was one who was very sick and benefitted greatly when he finally bit the bullet and implemented Freddd's "jump in with both feet" protocol.

    Main thing to remember is that when your cells start "waking up" they can use up all your potassium very quickly due to increased demands. Too little potassium is dangerous. So if you decide to take the plunge and go higher with folate rather quickly for a couple of days, keep some potassium on hand. Supplement a little bit at the first sign of deficiency and then supplement a little more at intervals until deficiency symptoms subside.

    I can't remember if you're one of the ones with adrenal fatigue, but if you are you may need to balance your potassium and salt. It can be confusing but it will work.

    And unless you let potassium deficiency go, it's not dangerous. Even if going higher doesn't help you, as long as you don't get dangerously potassium deficient I don't think there's any harm. At least, that's my conclusion from what I've read. I mean, psychiatrists put people on big doses of Deplin (high-dose metafolin) all the time, and usually without attendant increase in B12, either. So it seems that potential potassium deficiency is the most dangerous thing about increasing folate quickly.

    Also to remember is that if jumping in with both feet doesnt' work for you now, it doesn't mean that it won't work for you in the future. You may need to clean up your diet some more, possibly take a look at the role heavy metals are playing your recovery (or lack of recovery, as the case may be), or look at balancing some nutrients before you proceed. This has happened to me in the past on my first attempts with other therapies. For example, I couldn't tolerate iodine when I first started taking it. It gave me insomnia, anxiety, polyuria, wired me out, made me tired, etc. But after cleaning up my diet and chelating for heavy metals (took several months), as well as upping my magnesium and selenium intake (plus some other minerals) I tolerated iodine just fine. It's now a valuable part of my health regimen. Again, just for an example of why trying something once and not succeeding does not mean you should give up.

    The whole process of healing can be daunting in general, and if you're an active participant it's a lot of work and takes a lot of trial and error. But it's definitely more rewarding than passively doing everything a doctor tells you.
    Last edited: Apr 17, 2014
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  12. LynnJ

    LynnJ

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    I haven't even been taking folate that long. I had a few days where I took one or two 800mcg pills, and then yesterday I decided to take three. Possibly four... Can't remember. Anyway, this morning is when I woke up feeling awful. So of course my instinct was to connect the higher dosage with the negative side effects. Maybe this weekend I'll try taking, say, 4000-5000mcg. But again, it's the frequent, opposite advice on folate (jump in with both feet vs. start slowly) that has me wondering how best to do this. If it was just minor side effects it wouldn't be a biggie, but it seems like folate can really mess with you (increased inflammation, etc.), so I'm trying to be careful here, particularly because I can't afford to miss a lot of work. And I can't handle much more physical pain.

    Still, until I experiment a few more times, I won't know...

    Maybe it wasn't really the folate at all, but a lack of potassium. I'm trying to eat potassium-rich foods and I'm supplementing with potassium citrate, but I don't remember exactly how much I took yesterday. It's hard to keep track of what symptoms are due to what deficiency.

    What I find interesting is that some people here say B12 is borderline wasted without folate, but back in mid-2013 when I started taking 5000mcg of B12 (and ONLY B12) per day, I eventually "healed" completely. At least, all my symptoms went away. I just got the shortness of breath and racing heart, which was probably potassium deficiency, POSSIBLY folate...
    Last edited: Apr 17, 2014
  13. whodathunkit

    whodathunkit Senior Member

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    @LynnJ: From what I've read everybody who develops paradoxical folate deficiency seems to be different in the amount of time it takes them to get ill. For me I think it was a couple of weeks, although thinking about it now I need to read back over old posts to be sure. So much has happened in the last six months. LOL But there are reports of three days, a week, etc.

    FYI, Freddd theorizes that there are levels of healing, and that a certain amount of folate is needed to pass through each level. But that amount is different for each person according to the state of their health. A very sick person will need more for each level, and for a longer period of time, than will a person who is not terribly ill.

    BTW, don't get too hung up on what the "levels" are...I suspect he may have chosen that term simply because it was the best way to conceptualize what he was saying, and also to help categorize the different symptoms that could be manifested when experiencing folate deficiency.

    Main point to the concept of levels being that you can't progress with healing unless you've got sufficient folate to drive the process. Also, sometimes you may get sick, get better, then get sick again. But each time you get better, you're better than you were before. It's like going up stairs or a scatter plot graph rather than a straight linear ramp or shot from illness to wellness.

    So, say you take 800mcg/day of folate for a while. That's enough to get you you going. But when your body tries to pass through to the second level on that amount of folate, it can't, because the folate is all used up. Or maybe it even stops halfway through the first level because you don't have enough folate to get all the way through that. It's like a car running out of gas. To get where you want to be, you need enough fuel to get there. You have to add more folate. When you do, you will progress until you use up all that folate. And so on, until you've done a bunch of healing. When your body is healed or at least well on the path to healing you can reduce the dosage. Or that's the theory.

    FYI, Freddd's theory has held pretty true in my case. I ramped up my dosage to 40mg folate per day (yes, that's *50* 800mcg tabs/day :eek:, I have a *very* high tolerance for swallowing pills :p) quite quickly (over the course of a couple of weeks). I stayed at this level for a couple of more weeks. Now I've ramped down to 26 mg/day (only 33 tabs/day, yay!). I'm keeping my dose this high for a while because I'm trying to see if the high-dose folate has a beneficial effect on my uterine fibroids. So far I believe it does, so I'm sticking with high-dose for a while longer. But were it not for my fibroids, I would have reduced my dose still further to a more normal dosage. High-dose folate is expensive!

    Anyway, I'd hoped this would be a short answer but turned out to be a long one.

    Search the forum for "paradoxical folate deficiency" or "paradoxical folate insufficiency" and see if you can pull up Freddd's list of symptoms that correspond to a lack of folate at the levels of healing. I think you'll see some of your symptoms in there. But again, don't get too hung up on levels. Concentrate on making better progress.

    You may also need to consider adding a tiny bit of adenosylcobalamin to your regimen, as it's the other type of B12 needed for correct methylation. But if I were you I would try ramping my folate up first. You don't want to do too much at once.

    Good luck!
    Last edited: Apr 17, 2014
  14. whodathunkit

    whodathunkit Senior Member

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    FYI, paradoxical insufficiency symptoms according to Freddd. What follows is a direct quote from his posts.

    "Paradoxical Methylfolate Insufficiency
    AKA “donut hole folate deficiency”. Donut hole means some processes are slipping through. Check out the groups of symptoms. Two or three are often as many as some people have until it gets worse.

    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

    Edema

    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 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start."
    Last edited: Apr 17, 2014
  15. whodathunkit

    whodathunkit Senior Member

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    Also, this is another quote from him from some of the notes I've taken, but for some reason I didn't copy the link to the thread this came from so I can't direct you to that. The red text is a highlight for you, because of what you said about it only took you three days to get sick.

    Sez Freddd in another thread:

    "Then the question comes up do you have anxiety. If you have anxiety and hyper responses, one needs to start with crumbs of AdoCbl and MeCbl, of the 5 star brands.

    If not having anxiety, then a 1mg Enzymatic Therapy or 1/4 of Country Life Methyl B12 5mg, 1/4 capsule or tablet of Anabol Naturals AdoCbl and 1/4 of an 800mcg Metafolin 4 times a day is a good starting place for many. There is often a brightening of everything neurological as the nerves start working better than they have in years. Pains intensify, things look brighter (dimming of vision is a b12 deficiency symptom), sensations that have been ignored for years become new and obvious again. Often there is a significant increase in energy as the AdoCbl gets into the mitochondria
    . If a healing startup occurs then often on about the third day a person starts to feel really sick. This is typically a combination of two induced deficiencies, low potassium and donut hole paradoxical folate deficiency. It is dangerous to ignore the low potassium and very unpleasant to ignore the low folate. These can be taken to a balance point were those symptoms go away. The low potassium symptoms can go away in hours and also return in hours without another dose. A lot of people find that the need for potassium can jump up from 1200 to over 2000mg a day and adjustments need to be made as things progress. The low folate symptoms can start being relieved in hours and a person may end up needing anywhere from maybe 1600 to 30,000 mcg a day depending upon a whole lot of factors. Here is a list of the more common symptoms [that list in the post above--whodathunkit]. Many people might have several from both varieties. Which exact ones though vary tremendously from person to person."

    End of quoting Freddd.

    Nuggets like this are why I exhort everyone to research, research, research this forum. It's a goldmine, and Freddd's are obviously not the only great posts out there. Too many too list but some of the most valuable info I've found has come from Valentjin, Violeta, stridor, adreno, ahmo, Star-Anise, Leopardtail, Radio, etc., etc. There is loads of good information out there that can guide you. I subscribe to Freddd's approach because it's helped me a great deal, but there's lots more out there that's extremely helpful.

    Even if you can't make sense of it on the first read, you will eventually if you don't give up. Years ago, before adrenal fatigue and everything caught up with me, I tutored math to help put myself through my bachelor's degree. When my students would come to me say they did poorly on their test even though they'd done all their homework, I would always ask " *How many times* did you do your homework?" Inevitably the people who could not retain the information well enough to get a good grade or even pass said "Only once."

    But reading or doing something only once is simply is not enough repetition for anyone except a genius or someone with a photographic memory to retain information, regardless of whether or not the person has CFS/brain fog/confusion.

    Three times reading something or performing a problem solving function (like us trying to synthesize some of this information here into something that will help ourselves) is the minimum for even a person who is not sick to memorize something well enough to regurgitate it for a test.

    Just by way of saying, don't quit researching and don't give up no matter how bad you feel. Lots of information out there to guide you. :)
    ahmo and Gondwanaland like this.
  16. LynnJ

    LynnJ

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    An update...

    Still plugging away with the B12. To be honest, I'm a little disappointed. Its only been about three weeks, but during my last "round" of B12 about a year ago I was feeling much better at this point than I am now.

    Feet still burning and pulsing a bit. The shoulder/clavicle pain is very frustrating. It's not even noon yet and I'm already starting to have trouble shrugging my right shoulder because it hurts so much when I try.

    I'm definitely trying to take more folate. Right now it's 11:40, and so far today I've taken 6000mcg of methyl B12 and 3200mcg of folate. I'll continue to take more of both as well as adB12 throughout the day.

    I'm trying to keep my potassium levels up as well, although sometimes the supplements cause stomach upset.

    I know everyone here says that chewing B12 instead of letting it dissolve in one's mouth drastically reduces the absorption, but is it at all possible that for some people that may NOT be the case? Just curious...

    Update: holy cow do I feel bad right now. Feels like all the muscles in my upper back and shoulders are rotting, neck is super stiff, etc.

    Starting to wonder if the folate is to blame. This morning/early afternoon I took 6000mcg total of B12, along with 3200mcg of folate.

    I've noticed I feel better on the weekends, and that's generally when I get lazy with the folate because I keep it in my purse. I usually take a bit, but I end up forgetting and focus on the B12 instead.

    I'm going to stop folate completely and see how I feel tomorrow and Friday just taking B12.
    Last edited: Apr 30, 2014

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