The 12th Invest in ME Conference, Part 1
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Strong Mental Reaction to B Vitamins. What would that be?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by detharlwy, Feb 8, 2015.

  1. detharlwy

    detharlwy

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    I have been testing nutritional supplements to optimize and treat some of my mental symptoms, for years.

    There are lots of supplements that appear to make me hypomanic, feel well etc. My brain seems to be sensitive. SSRI's make me manic too. (Prozac, etc.)

    However in order to simplify the process and filter out complicated herbal supplements to avoid complications, last year I tried Activated B Complex in an isolated manner first time in years. Before that I was testing them combined with other herbals and supplements.

    In the end, it turned out that I am over sensitive to Activated B mentally. Yes - it makes me manic and overstimulated. It makes me manic in a manner that even taking in combination with anti-manic agents, it breaks the barrier, and still makes me manic although I am a Zombie when using antimanic. It is hypomania and apparent. Not just feeling of happiness.

    Yes - I even talk about B12 (Methylcobalamin) in an isolated manner. I have never seen an instance of B12 making manic, going through the academic journals or case reports. There is one opposite instance of B12 deficiency, which made some lady manic. But no similar case to mine or study of B12 making manic. I am speaking of daily amount lower than 1Mg (not exteme amounts relative to the supplement industry).

    This is valid for the other active B vitamins too.

    At first I feel really good then hypomanic and goes on like this. Then I interrupt and let it remain in a controllable manner - when I take them again I become manic again. I can not imagine what if I take them daily uninterrupted and uncontrollably. The stored B12 in the liver already hold me somewhat symptom free, even make me hypomanic.

    At first I thought I had a deficiency. But, years ago when I never used B12 my level was around 210. Ok - it can be a deficiency one persons 210 level can be other persons 50 - this is relative. There are cases that when people are supplemented with B12 even at 200 levels their psychosis seem to be gone.

    However lets say that I have a relative deficiency and I need, lets say, minimum 1000 level for normal brain functions. (Just assuming that my brain metabolism needs that)

    But it is apparent that feeling of hypomania, over-well feeling etc. are not normal for people. As I wrote, I pass the hypomania mark in a short time of only a day or so. This includes the sleep hours.

    So I can not understand what the reason would be. I read elsewhere that B's are closely related to methlyation. And whatever google search I make - the most concentrated discussions and information leads to here - this forum. Would this be related to it? Or what other things?

    This is something excellent - yes, all mental problems go away including some symptoms I can not explain here in a detailed manner here (yes, some emotional, psychiatric problems.) but I have just a small worry that what happens if I use it in a continuous manner and it becomes simply ineffective leading to the return of the symptoms including depression and some other similar things. I am not speaking of just becoming manic - lots of problems also go away.

    Can we discuss here what are B's doing to me, so I can feel comfortable using them or be cautious considering the possibilitiy of losing effectiveness?

    I read here that there is a Methlyation pathway panel tests. Other than this - assuming that there will not be an apparent and abnormal result in that, would we elaborate here what would be going on?

    I am speaking of coming from lots of mental bottoms to an extent of symptom free life - and of course this is a combined effort of myself, however B's seem to be one of the most effective part of that. I even do not seem to care some big problems in my life. Yes - I can use them in trace amounts just not to be hypomanic, but just be "fine". But, then again, the question of "what is happening" and "what will happen" worries me, being someone knowing that I have a sensitive chemistry and having a "not so bright" past in terms of mental health.

    I would appreciate if you assist me understanding what this would be in order to take necessary precautions or be more "relaxed" on this subject. I am speaking of extreme changes in neurotransmitters. And this is apparent that B's are too effective - I tested this on a trial and error basis.

    I know this forum appears to be CFS etc. related however it seems to be on of the most informative forum on B's. Methlation issue or whatever else - the combined information and experience of this forum would give me to some clues. Even not in the extreme manner as mine, overall experience here would lead to some conclusion or a clue on what would be happening. And may be you can suggest somethings.

    Thanks in advance!...
     
    Last edited: Feb 8, 2015
  2. caledonia

    caledonia

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    Hi detharlwy,

    If you have COMT mutations, methylcobalamin can cause mood swings. Even amounts well below 1000mcg could be too much for some people. The solution is to switch to either hydroxycobalamin or a combination of hydroxy + adenosylcobalamin. You may need to start very low, say 50mcg, and work your way up as tolerated.

    On a serum B12 test, 200 is a deficiency. So you can be deficient - that will cause symptoms, and you can take the wrong kind of B12 and that will cause symptoms.

    You could be really lucky and B12 deficiency might be your only problem, or it might just be one piece to a very complex puzzle. Once you start taking any B vitamins, it affects methylation, which is very complicated. You might be deficient in somethings, or overloaded in others. You might have toxic metals or other environmental factors complicating things.

    There are some doctors who specialize in methylation in general, and in the mental health aspects of methylation in particular. I have a doctors link in my signature links (below). Those are general methylation practitioners. There is also the William Walsh Institute specifically for mental health. http://www.walshinstitute.org/
     
  3. detharlwy

    detharlwy

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    Thank you Caledonia. Your hint will be useful (ComT). Every input is essential actually. May be as you say, and as I also worry, this would also be an unknown puzzle. I hope whatever it is - the end will be fine. At least I have to do my work - be educated on this topic in order to do what I do more clear as a necessary precaution.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    B vitamins rev me up big time. I want to be on them because they're so great for your nervous system but they make me wired. I have been taking B12 sublingually and I have so much energy that I can't sit down. I wouldn't say I'm manic, I would just say I'm overly energized, like being on Ritalin or Adderall.

    I have liver issues and I'm wondering how much that plays a part. For example, if I take a medicine, I will feel it a couple hours later. If I take Percocet I feel drugged two hours after taking it which makes no sense to me. I have phase 2 liver issues.
     
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  5. dead.money

    dead.money

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    @Freddd (or anyone else who can help)

    I'm going through something similar. I'm beginning methylation and I've hit a rough patch. A bit of background: I spent many years in moldy homes and abusing drugs; mostly dissociatives and opiates. I really screwed my brain up with dxm 12 years ago and never got around to figuring out what to do about it. I've had "brain pain" since the day I had a near death experience during those days. I've been pretty over exposed to antibiotics too. Depression since I was 10, and anxiety since I was 15. I'm 27 now. 4 years ago I developed chronic candidiasis and never fully recovered. I treated myself for it incorrectly and flooded my body with toxins for a year. I was put into somewhat of a remission with nystatin. Tons of lingering symptoms but nowhere near as bad as it used to be. In the midst of getting sober, becoming independent, and almost dying to the fungus, I was misdiagnosed schizoaffective and almost lost my mind. I've been on many psych drugs but nothing ever touches my depression and anxiety.

    Fast forward to now: I sleep 12 hours a day, I'm borderline suicidal half the time, weak, always tired, and scared of everything for no good reason. My muscles get locked up and tired quickly, I have constant rashes, dizziness, trouble breathing, and urinary pain. I have 2 ulcers in my stomach and an inflamed, raw upper gi tract. I have severe memory issues and can't concentrate and take in information at least partially because of my anxiety. I also have persistent intrusive thoughts and occasional bizarre thought processes (thank god it's not as bad as it used to be). I'm on 2 antidepressants and an antipsychotic. I hardly ever experience positive emotions and I'm constantly stressed. I barely get by and can't hold a job. Aside from that, from the outside I have a pretty good life and a lot of positive things going on... But it's impossible to feel that intellectual perspective in my heart. I meditate and pray and work a solid program in aa, take all my meds, eat a healthy low carb alkaline diet with good supplements for my health problems, and exercise when I'm feeling up to it.

    I tried l methylfolate recently and it put me into complete remission from my depression and anxiety for a week. I felt like myself again, was sleeping normal hours, was very productive, and completely happy and taking in everything instead of being fearful and stuck in my head...But it turned on me. I became very irritable,anxious, tired, full of self loathing, my muscles got weak, I experienced heavy breathing and heart palpitations, I got headaches and a feeling of sensory overload. I read this can be over methylation. Since then, I reduced my dose from 7 mgs l methylfolate to 1mg and started eating a crumb of methyl b12. I don't feel any positive effects anymore at all but the side effects are better. This happens with antidepressants too. I feel great for a week and then I'm as bad as ever. I take niacin when I feel really anxious and it helps. The b12 makes my anxiety way worse, but I've been taking tiny amounts because I read it's necessary.

    I'm a biotech student so the biochemistry behind mthfr mutations and methylation intrigues me, but this is a huge challenge addressing the problem. If I have a problem with methylation, it would make a lot of sense since antidepressants don't work well on me and benzos don't doanything. I read people with mthfr mutations don't have enough of the enzyme that breaksdown benzos. I wonder if the poor methylation could be the reason I've never been able torecover from the Candida. Info is limited from the searching I've done and my own resources are even more limited. I'm looking for a place to start and recommendations on my recovery. I plan on getting a genetic metabolic profile asap and finding some more forums to post on.

    Where do you recommend I start and do you have any other advice for me? Any resources you can point me to? What's the quickest way to get back the initial effects I got from the l methylfolate?

    If you need any more specific info about my situation I'll elaborate. Trying to cut down on an already long post. Thanks for reading if you've made it this far.

    Dave
     
  6. dead.money

    dead.money

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    @detharlwy , can you give me info about the methylation pathway panel testing? I was planning on just doing 23 and me and gg. What is this testing and is it better than a genetic metabolic profile? As you can see from my other post, what you fear happened to me. The metafolin cured almost all my mental problems and then abruptly stopped working and gave me horrible side effects. Hoping someone has gone through something similar and figured out the answer to the problem. If it happens to you and you find a way through it, please let me know. Keep me posted on your progress, it's good to know someone else who's investigating methylation for psych issues. I'm around if you ever need me.
     
  7. boo85

    boo85 Senior Member

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    @dead.money

    How many mcg of B12 did you end up taking? I'm not all that familiar with methylation, but crashing after making progress is quite common but it's a good sign that you felt some effect from it.

    Remember that take potassium every day so that your body can use the potassium and B12 to heal itself.

    Have you ever had your intracellular B12 levels tested? (holotranscobalamin test?) I would start with that if I were you...
     
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  8. dead.money

    dead.money

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    I've just been biting off a little chunk from a 1mg sublingual pill. I take potassium every day for muscle weakness, it's probably too little for these purposes now that I think of it. I'll check out that test, unfortunately I have a crappy doctor so I'm gonna need to find a new one.
     
  9. PeterPositive

    PeterPositive Senior Member

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    I have had similar problems for years with B vits.
    Since 2008 I've been battling with B supplements. Even the most basic B complex, 100% RDA, was a ton of bricks on my stomach. I tried to endure for a while then quit. Additionally it would give me a lot of extra anxiety ... which really wasn't what I was looking for :(

    I probably tried 4-5 different brands to see if it was a problem with excipients. Nothing. Plus the last brand I tested was a liquid form with a higher dose of each vitamin, and it felt like being on a mix of cocaine and LSD. :nervous:

    In the last 3-4 years I had the same struggle all over again because of very high homocysteine which requires B vitamins. With tons of patience and going super slow, one vitamin at a time, using sublinguals I was finally able to build the damn tolerance and now I can take megadoses without issues.

    If 7 years ago someone told me I would have been able to take 10mg+ of B12 a day I would have laughed at his face :lol: At that time I was struggling with 2.5 micrograms (1/1000 of 1 mg) and going nowhere.

    I don't know if this has to do with my MHTFR mutations or digestive issues or both, but it seems as if my body had to be re-educated from scratch to handle B vitamins.

    Bottom line: it takes a truckload of patience, maybe isolating the one or two vitamins in the B group that are more problematic, adding one at a time, using very small dosages and experimenting with different forms (caps, liquid, lozenges) etc... but it can be done.

    The problem is just not getting scared by a few bad experiences.

    Last but not least, if you're lucky to have a good digestion, you may not necessarily need supplements but just to adjust the diet towards more B-vit. rich foods.
     
  10. detharlwy

    detharlwy

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    dead.money

    I learnt the Pathway Panel Testing Here. There seems to be lots of places doing this.

    I hope you find out the solution with the same hope that I will not delve into problems.

    I am sending you my email address by pm in case of a future correspondence is needed for the findings of our researches and experiences, although the best arsenal to learn about the B issues seem to be here.

    Better than most of the professionals, people here learnt everything by experience strengthening it with the knowledge they gained.

    Edit: I was unable to send a private message. My email address is: geminiforex (at) gmail in case you need it.
     
  11. detharlwy

    detharlwy

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    Caledonia -

    I will have a ComT Test. Here where I am the laboratory gets it done through Mayo Clinic.

    The lab representative told me they have this test according to what I ask:

    http://www.mayomedicallaboratories.com/test-catalog/Overview/83301

    If that's it, I will have it. I do not want to have a wrong test done.

    If I have mutation, knowing it of course will give no harm - on the opposite, new medical developments can make more sense to me being aware of a problem.

    However, other than this, if I have a ComT mutation, will knowing this will have additional benefits for me - such as, are there any treatments? or other things I can do to reverse this mutation or other things?

    I will get the pathway test and the holotranscobolomin, I guess. One at a time.

    I will search these subjects, and as the time passes will be sharing my test results.

    Edit: I just looked, there is no absolute treatment for COM-T mutation. However it will give hint on lots of things.
     
  12. boo85

    boo85 Senior Member

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    It's hard to find a good doctor that actually -cares- for you as a person and patient... But I'm sure they are out there (they are just rare.)

    You might want to start keeping a log, even if you just use an old notebook, of how much vitamins you are having each day, especially of the vitamins you have issue with and a reaction to.

    How much potassium do you estimate you're having each day?

    What causes you to have muscle weakness, do you know?
     
  13. dead.money

    dead.money

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    I'm taking 10 meqs, I think that's like 800 mgs. The muscle weakness has to do with the Candida or whatever strain of fungus I have. When I eat sugar or simple carbs everything gets weak super fast. I'm starting a strong probiotic and getting a gi effects comprehensive and microbial ecology profile done soon. How much potassium would you recommend for low dose l methylfolate (1000-2000mcgs)? I actually have a daily check list of every supplement in my phone. I need to use it more often. I'm good at tracking things and being organized about my health when my head is in a good place, but that depends on me being organized lol. Kind of a catch 22 sometimes.
     
  14. boo85

    boo85 Senior Member

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    Well, to give you an idea, when I first started B12, I took it on its own on a whim after finding an obscure post that B12 cures arm pains/repetitive stress injury, not knowing I actually had some sort of B12 deficiency. The first 3 days I took 250mcg B12, and the 4th day I took 500mcg. This set off a very dangerous reaction in my which I believe was hypokalemia (low potassium.)

    So you are taking nearly double that amount of B12 every day, which would be a lot for my body, I think.

    I take about 3000mg of potassium each day. There's no real upper limit to potassium, unless you have kidney troubles.

    I have a container of potassium salts that I ordered through the health store. I make a coconut and banana drink from it since coconut and banana are both high in potassium anyway. The salts taste a bit foul though, so better mixed in a smoothie with other things like berries. Low potassium is much much more of a danger than high potassium (unless you can't excrete it properly like if you have low kidney function.)
     
  15. cobain_justinsane

    cobain_justinsane

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    Hey @detharlwy

    I can definitely relate to your struggles. I have also been dealing with mental health issues for about 10 years now and they have gotten worse in the last 5 years. I have some other physical symptoms but my primary problems are mental health related.

    I have been diagnosed with MTHFR and my B12 is in the very low 200's. I have no COMT mutations and yet I react in a similar way to the Methylated B Vitamins that you do. I have tried twice to take Methylfolate and MethylB12 together and reached a dose of 1600 mcg Mfolate and 2000 MB12 and at first experienced quite severe depression, which lead to a couple of goods days then a very hyper, euphoric almost manic feeling. That's when I stopped taking the supplements. I tried again a week later and made it up to 1000mcg MB12 and 1600mcg Mfolate but became very depressed and quite anxious. Stopped again. Going to try next week to start MB12 by itself as I suspect I could have a methyl-trap due to my low B12.

    Some people on these forums will say that you are having these reactions because you may have a COMT mutation.
    Others may say that these are "startup reactions" and you must endure them. They will pass in time and you will feel much better.

    I haven't quite figured it out yet. Nobody on here really knows for sure. Some have reactions to the Methyl B vitamins without having any COMT mutations. Some with COMT mutations do just fine with high doses of Methyl B vitamins.

    So therefore I lean towards the latter explanation.

    Also, as you mentioned there are not many case reports of Methyl B12 or Methylfolate causing the symptoms we are talking about. If you check out some lectures on youtube by
    -Dr. Neil Rawlinss
    -Dr. Kendal Stewart
    -Dr. Andrew Farah
    they all say these supplements are very well tolerated and have absolutely no side effects. They are also giving these supplements in very, very high doses.
    They have also probably prescribed these supplements to hundreds of their patients who, odds are, probably a high percentage of them potentially have COMT mutations.

    I know of a few people on the forums who have been helped quite a bit by these supplements and had mental health issues perhaps they can chime in on this discussion. Provide us with some history, their treatment strategies, dosages, the side effects they endured or possibly didn't experience, how they dealt with side effects and how long the side effects lasted.

    @aturtles
    @stridor
    @Martial
    @Red04 (if he's still around)

    Hopefully these folks can chime in and provide some insight.

    It probably wouldn't be a bad idea for you to get the 23 and me panel done . That way you can run your results through genetic genie and find out what all your mutations are. Including COMT and MTHFR. It only costs $99 so it's well worth it.

    I hope everything works out. This forum is a great resource so take advantage of it!!
     
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  16. boo85

    boo85 Senior Member

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    @cobain_justinsane

    Have you ever thought of starting really low with B12 and methylfolate and working your way up eventually?

    For example, for me, any dose more than 50mcg MF and 125mcg B12 is way too overstimulating. So those are the doses that I stay at for now.

    It's a balance between trying to get enough B12 so your body and mind can repair itself, and getting too overstimulated.

    The 200s of B12 is very low. The usual B12 test is quite inaccurate anyway, but I was having low B12 symptoms at around 250 pmol/L.

    Have you had the more accurate transholocobalamin test? This tests B12 inside the cells, not just in the blood.
     
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  17. detharlwy

    detharlwy

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    cobain_justinsane

    Detailed reply, thank you!..

    I also feel the same, this is very rare and for me, human brain being very complicated, we can not drive conclusions from a few samples.

    However, getting more information does not hurt and there can be benefits for me, and for all parties having symptoms (even reading these later), reading between the lines, and who knows, extracting a very small detail would change everything for some of us, or make a little difference - or avoid some problems. Since we are not a large "pool of samples" this is not highly certain and will not give abstract conclusions, but every person's experience would add up a bit. And people can relate or fit these to themselves finding similarities or differences. So, in a very complicated matter like this (human brain) every bit of information is essential for us. Thanks for giving the details. I also posted to the other members you mention, to their profiles, in case they would like to join the discussion.

    In my case, even I do not get methylcobalamin, the blood level Methylcobalamin from past intakes stored in the liver already is enough to make me hypomanic. I know this from the experience that when I take 1mg daily it really increases substantially - so blood level is already making an impact for me. For that matter in mind, at first I thought Caledonia's suggestions to take Adenyl + Hydroxy half by half. But thinking for some moment - I guess this would be risky. You might say "what". I mean, if my other mental symptoms disappeared with the help of only Methylcobalamin form (although it gives a hypomania side effect) , and if I get other forms of B12 for a few months to test, then they would be stored in the liver for 2 years and it would complicate things locking me long term with these tests - so I am a bit reluctant. However Caledonia's suggestion is vital for me. Knowing that Methylcobalamin can really differ from other forms of B12 (Hydroxy, Adeno, Cyano etc.) in terms of effects, something are more clear for me and now makes more sense. So every input is essential in that case.

    I am not just talking about Methylcobalamin - also other forms of Active B's are too effective. May be if I had other forms of B12 in my blood - other active B's (quatrefolic,active b3, active b6 etc.) might not have been that much effective. Or vice versa - with an other form of B12 I can have more balanced happiness without the need of anti manic medications - and with a possibility of relatively lower future risk. With common sense, I can decide and test diligently.

    I took a look and 23andMe site. They put a notification box:

    "23andMe provides ancestry-related genetic reports and uninterpreted raw genetic data. We no longer offer our health-related genetic reports. If you are a current customer please go to the health page for more information. Close alert."

    Does this mean that the tests you mention are no longer available? I am asking because they might be doing the same test but might have put the warning to avoid legal percussion and responsibilities. Would it be possible that same tests you mention would still be done by them? I am not asking them - for the above mentioned possibility they might respond negatively although they still give the results. Do you think I can purchase the kit?

    boo85

    Re transholocobalamin test: I have blood level of I guess, nowadays, much over than 1000. So - it might be apparent that cells already can have enough B12 inside them. So it might not give any information if my cells can contain enough B12 at "normal serum levels" and this might not give sufficient information if my b12 metabolism is not working well? Is my logic correct? If my logic is correct - then should I wait for my serum levels to drop further to get more accurate results?
     
    Last edited: Feb 13, 2015
  18. cobain_justinsane

    cobain_justinsane

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    @boo85

    I have not had any B12 testing done besides serum testing.
    I am going to begin B12 supplementation again this coming week as I have to start raising my levels before I start running into some serious problems from deficiency. I'm going to start low with just the Methyl B12 as I suspect I might be having methyl-trap issues when supplementing both MFolate and MB12. I'm probably going to start off with 250 mcg MB12 and see how that goes.

    @detharlwy

    The reason people are suggesting Hydroxy B12 is because it is an inactive form of B12 and your body will only convert as much as it needs to the active forms (Methyl and Adeno). So theoretically you won't "overdo it" because your body will only really take what it needs and get rid of the rest. Also, if the over methylation theory is correct and that is what is causing your hypomanic symptoms, Hydroxy B12 has no methyl groups. Therefore it won't cause you to overmethylate like Methyl B12 and Methylfolate would, (along with other methyl donors such as TMG and SAM-E).

    As for the 23 and me test. It will provide you with your raw data, which you can then extract to your desktop and run through a website such as geneticgenie.org which will give you your methylation results. 23 and me won't actually provide you with your methylation profile you have to do it yourself and it's really easy!
     
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  19. Martial

    Martial Senior Member

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    I had some mental side effects but it was hard to differ from the disease process and flares (lyme), or protocol (Methylation supplements). Feeling a bit hyper or euphoric isn't necessarily worrisome enough to jump off the protocol in my own opinion though. There is still a difference between those type of reactions and a manic episode that would require a stay in an outpatient mental health clinic. Some mental reactions are pretty common and should be a bit expected just go at a rate you can handle and go from there. Your B 12 levels at the level of 200-300 are still very, very low. You should aim to at least get your levels to 1000 and keep up with some kind of treatment. Of course not meaning this as medical guidance or advice. It could help to find a doctor that is well informed in the issues of b12 deficiency and methylation as well.
     
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  20. aturtles

    aturtles Senior Member

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    @detharlwy, I came to methylation cycle work through having a severe deficit of neurotransmitters. See my sig for my startup report -- it was rocky. Using freddd's protocol -- Deadlock Quartet and other co-factors -- was and is what works for me.

    You probably know that a steady and saturated state of MeCbl means you don't notice much, so if you're noticing something it means that there's movement. Intensity can mean many things. I have good days and bad, though the trend is steeply up -- many more good days, and my brain works better now.

    As for testing, I've had genetic and other testing and found that it only waves a hand generally in the right direction, if that; my body, your body -- we all have unique histories (disease, accidents, toxic exposures, etc, etc) that affect our responses and needs, and we do not yet have the med tech to test for all that.

    In my personal journey on this protocol, I've learned to look for symptoms of effects and what they mean. For me that means the Deadlock Quartet and various co-factors, one change at a time, titrating up.

    If you have not already, I recommend you read:

    1. "THE 95% REASONS B12 AND FOLATE THERAPIES FAIL"
    http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/page-6#post-395419

    2. A Guide to Freddd's Protocol http://forums.phoenixrising.me/index.php?attachments/a-guide-to-freddd-s-protocol-pdf.7662/

    Also: Multivitimns and B-complex can be hidden sources of trouble, from folic acid to high doses of B1,B2,B3. (I got bit by out-of-date info about B-complex. Stay away from Pure Encapsulations B Complex Plus. While Freddd's posts are not always easy to read, they are worth the trouble; if I'd paid better attention to his warning about B1,B2,B3 levels I would have saved myself some steps backward.)
     
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