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Folate Issues & Methylation

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by madietodd, Jan 24, 2012.

  1. madietodd

    madietodd Senior Member

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    I'm pretty sure it was Freddd who said that 500mg was the amount that would clearly either work, or not. Meaning if low potassium was causing the symptoms, that amount would fix them. So I just take that amount whenever I feel bad, to see what happens. Well, that's how I figured out how much I need in a day.
     
    L'engle likes this.
  2. Rosebud Dairy

    Rosebud Dairy Senior Member

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    okay!!

    500 mg of Potassium chelate 5-6 times a day seems to be pretty close to a sweet spot for me, as long as I avoid FOLIC ACID. Potassium in this form does not upset my stomach, and I made it through cycle days 1-4 with NO potassium crash (a NEW and minor small miracle)....just a few muscle twinges that were fixed pretty quickly by taking the next 500 mg dose of potassium chelate. I have upped my methylfolate to 7.5 every time I take the potassium (generic prescription for now, want to switch to name brand, I think).

    I might post a spread sheet of my vitamins, times and doses.


    I am avoiding white flour, and only have some whole wheat bread, half a slice, every few days. My veggies are cooked for now. I had a salad the other day, but still being careful with raw veg. I had 3-5 raw grapes today, and a banana.
     
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  3. madietodd

    madietodd Senior Member

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    Congratulations on your potassium success! It's such a relief to get a piece of this figured out.

    Do you avoid raw foods because of stomach issues? Or as part of your folinic acid experiments?

    How did you figure out that you need that amount of methylfolate? I would never have thought to go that high. And I'm very interested in your results if/when you switch to metafolin.

    So in what ways do you feel different on this regimen? Are you up and down like me? Better overall in any symptom?

    If you decide to share your vitamins-timing information, could you put in when you eat? If that's relevant to your schedule?
     
  4. madietodd

    madietodd Senior Member

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    I'm sticking this here so I can find it again later. I'm hoping for opinions about the benefits or dangers of stimulating glutamate in this way:

    Ketamine: The best single agent for CFS/FMS and all other neurosomatic disorders. Known best as an NMDA receptor antagonist (the NMDA receptor is one of the several receptors for the excitatory amino acid glutamate), it increases dopamine in the limbic system, a very important objective in CFS. I administer it by slow intravenous infusion or in PLO gel for transdermal (through the skin) absorption. The intravenous route is more effective, but transdermal application can be done daily, and if effective, can obviate peaks and valleys and need for IVs. I have seen no cases of Ketamine abuse among my patients. Ketamine is one component of my "resurrection cocktail," for patients who have been bedridden for more than a year and whom I may only see once. The others are IV ascorbate (discussed in Betrayal), IV lidocaine, IV thyrotropin- releasing hormone (which raises all biogenic amines plus acetylcholine), Nimotop, and Neurontin (still the most effective oral agent but is being pushed by Tasmar). I am doing trials with Ketamme eyedrops.

    Found in a post (#23) by Heapsreal on Wayne's thread (http://forums.phoenixrising.me/show...gment-on-Anti-Depressants-Efficacy-vs-Placebo), from this site: http://sunshine35446.yuku.com/topic/2068. It's from Dr. Jay Goldstein's CFS protocol.
     
  5. Pea

    Pea Senior Member

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    I'm so glad some of you are getting positive improvements!

    I read that ketamine is just a painkiller, and can reduce B12. There is a lot of info in Wikipedia - I don't understand everything in Wiki, but I will often look there for something to see HOW things work and then maybe look for a natural alternative.

    http://en.wikipedia.org/wiki/Ketamine
     
  6. rydra_wong

    rydra_wong Guest

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    So, low dopamine is a problem in CFS? Because here are the reasons I know of for low dopamine:
    (1) Low BH4 (and BH4 can be raised via methylfolate, Vitamin C, estrogen, lowered by aspirin, excessive protein)
    (2) low phnylalanine or tyrosine
    (3) genetic defects causing PKU (inability to digest phenylalanine)
    (4) insufficient copper (estrogen increases the half life of copper)

    I also have low dopamine. I have 3 genes that cause low BH4. I am trying to address low BH4 now.
    I got it from my doctor -- not kuvan which costs hubdreds of dollars a month - the one I got costs $70 for a 2 moth supply. I am only starting to address this, so not sure what's ging to work yet. Seems like the BH4 lowered my blood sugar so I will have to go slow.

    Rydra
     
  7. madietodd

    madietodd Senior Member

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    Test

    "There is considerable evidence that in ME/CFS there is a functional (as opposed to an absolute) deficiency of B12, due to glutathione depletion. This leads to a partial block of the enzyme methionine synthase, which links the methylation cycle and the folate metabolism. When this enzyme becomes partially blocked, it impacts both both of them negatively. The methyl trap mechanism channels other folates in the cells into methylfolate, and the elevated peroxynitrite (due to glutathione depletion and oxidative stress) breaks down the intracellular methylfolate.

    The result of this is that the cells are not able to use either B12 or folate properly."

    Rich, post #2482, B12 thread (http://forums.phoenixrising.me/showthread.php?188-B-12-The-Hidden-Story&p=242551#post242551), today.

    I've been on my mini dose of mb12 for a little over a week. I've gotten a response, so I presume methylation is working (at least, better). If poor methylation has meant I'm not able to use folate properly, I might not have paradoxical folate deficiency. I might have been unable to process any folate on my hybrid protocol, without the mb12.

    Yesterday I only took one dose of metafolin (4 Solgar, 2 B-Complex) and potassium (6). Nothing bad happened, and I was fine on waking this morning. So today I decided to not take any (other than the 400mg metafolin in one B-Complex). So far, so good. I got a little sleepy and foggy before lunch, but nothing unusual for me. For lunch I had a salad (90g spring mix) with chicken, cheese, and almonds. I have purposely avoided carbohydrate today because I know it makes me tired.

    Within 10 minutes of finishing lunch, I got energized. All of the fuzziness went away, and I spent 2 hours outside raking/pulling vines. I've been in for 2 hours now, and I'm looking forward to a friend coming over (!).
     
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  8. L'engle

    L'engle moderate ME

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    So far I have had one really good day last week and am trying to duplicate those conditions. I had take n a lot of metafolin either the day before or two days, then when on a food folate avoidance diet. I think what happened is I felt good for the day that the folate was still in my system, while food folate was not, and before low potassium set in from avoiding vegetables and some grains. Since then I've gotten the potassium back up but have suqsequently run out of metafolin so I haven't been able to test the large amount again. I'm expecting the new order to arrive any time. So if I can duplicate the 'one great day' phenomena, I think I will be on the right track.
     
    madietodd likes this.
  9. Rosebud Dairy

    Rosebud Dairy Senior Member

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    Madie,

    I will answer, but it may take me a few days!

    Rosebud
     
  10. rydra_wong

    rydra_wong Guest

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    Soulfest, This sounds interesting to me. I also have two COMT defects, one +/+ and one +/-, however on two neurological tests 1-2 years apart I always tested low dopamine and low serotonin and low epinephrine (well I failed 11 out of the 13 neurological tests and the low epinephrin was a - duh! - because I have severe allergies). As far as I know I have no catecholamine surges (that refers to stuff made from dopamine, right?) but the thing is that I have 18 genetic defects out of 30 and I ahve had neurological problems my whole life so idk if I can separate one thing out from another. It was only by reading WrongDIagnosis that I found I had many symptoms I ignored in common with others - things like feelings of insects crawling on me - weird stuff.
    (I should tell you I have 3 genes causing low BH4 which seems to trump the two COMTs).

    If you wouldn't mind I'd like to hear a bit more - but remember I dont know a lot of these terms...like what is dysautonia? I am starting to think I have dopamine responsive dystonia - which is like a diurnal ataxia - like you move a little jerkily instead of smoothly. Is that the same as dysautonia?

    I have never had red urine from mB12 but I only took 5 pills one time and since it did nothing for me I did not pursue it. I am adverse to using up my supplement bottles in one day... I could not possibly afford that. I am fairly certain that the high mfolate dose is what I really should be taking but I cant - same reason, so I take 1/day and I think over time I am ok on that. Maybe could be a bit better, but unless I go one deplin it's not gonna happen.

    Here is something strange - I get a feeling like Vicks Vaporub - like extra wonderful perfusion in my brain if I take a high dose of choline, or a high dose of omega-3 or from a deplin-sized dose of mfolate. I have been afraid that by ignoring this (not taking deplin for example) that maybe it means my homocysteine behind the BBB is really high (even though it is not high in the rest of me). But now I am starting to wonder if these substances are cholinergic. For instance mfolate raises BH4 which raises dopamine. I think maybe choline raises dopamine? Well anyway surealy raises acetylcholine (is this cholinergic?) I know so little about this, but it seems I have to educate myself or I never get anywhere. Did you sister say what things you should avoid because they are cholinergic?

    Can you take me through cholinergic dumping symptom by symptom so I could recognise it? I am just a jumble of symptoms - my normal is probably actually weird - you know? For instance, would you think getting jitters from caffeine consumption icould be cholinergic dumping, or just normal? I have super caffeine jitters just now and suddenly wondered how many things I ignore as 'just me' are actually symptoms of something I could avoid.

    Oh, btw, I take 1g/day of olive leaf extract high inh oleuropein polyphenol and now they are saying that cholinergic-containing polyphenols use up COMT in +/+ and +/- genotypes and result in 40-60% less chance of breast cancer. I am wondering if the reason I am not sensitive to methyls is because the oleuropein is sponging them up!
    http://cancerres.aacrjournals.org/content/63/21/7526.full

    Thanks for any info. Very interesting.
    Rydra
     
  11. rydra_wong

    rydra_wong Guest

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    Hi, Just curious - how can you tell what is/is not too much / too little for you? I will pass on this that John Johnson wrote about cal mag ratios - he says the ratio you need depends on your thyroid hyper vs hypo...I take them in 1:1 - since I never take themseparately I have no idea how any other ratio would feel. When I was younger I took cal:Mag 2:1...

    http://www.ithyroid.com/ca_and_mg.htm

    I have gotton myself into a low thyroid condition because of low iron and it takes iron to make thyroid hormone. So I am feeling depressed :-(. Not really brain fog though - but on the other board many people there said their brain fog went away when they treated their thyroid problems. I guess I've had thyroid problems every PMS and not known it - sure knew about the moodiness though.

    Except I have a "lack of neural perfusion" and got to wondering if we are just using different terms for the same thing. (Or even if I am describing two distinct things the same way...because methylfolate will give me a Vicks Vaporub on the brain feeling - which surely is perfusion, but half of my brain at the same time does not seem to be getting perfusion (or has some swelling issue) and this I have identified as being related to thyroid issues for me). So maybe I should not say I dont have brain fog because we may be dscribing the same thing differently. I am pursuing with someone else whether in fact the things that make me feel like I'm getting more perfusion are simply increase dopamine and THAT is what I feel. For instance, mfolate increases BH4 which increases dopamine. Omega-3 allows more effective use of existing dopamine. Choline (which also does the sme thing for me) may also be cholinergic. I don't know if this could be of interest to you. But maybe.

    Take care
    Rydra
     
  12. rydra_wong

    rydra_wong Guest

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    I find this in a review here:
    http://jn.nutrition.org/content/133/3/941S.full.pdf html

    Two studies in healthy
    human volunteers independently demonstrated that a folatedeplete
    diet containing ;50120 mg of folate per d for 79 wk
    was sufficient to induce genomic DNA hypomethylation of
    blood mononuclear cells and that folate repletion over several
    weeks caused the hypomethylation to return toward normal
    (38, 53). Of considerable import is the observation that DNA
    hypomethylation evolved in both studies even though mean
    plasma folate levels never dropped below the normal range and
    anemia did not emerge, suggesting that DNA methylation is
    a rather sensitive tool for the identification of folate depletion.
    Nevertheless rises in plasma homocysteine
    appear a bit earlier than the evolution of DNA hypomethylation.

    ---
    The reviewer seems to think if your homocysteine is ok, then your folate status is ok. I hope that's right, but I think Rich said it's not always true. This is one thing I want to get right.

    Rydra
     
  13. topaz

    topaz Senior Member

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    Hi Rydra

    Re: "...however on two neurological tests 1-2 years apart I always tested low dopamine and low serotonin and low epinephrine'

    How are your neurotransmitter levels tested? We're primitive here in Oz. I asked my GP on Monday (again) about this without any luck and I may need to enquire at a functional lab.

    Thank you!
     
  14. Rosebud Dairy

    Rosebud Dairy Senior Member

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    ______________________________________

    Raw veg and/or low potassium seem to be what might be causing flares.

    I upped the metafolin and potassium on critical days (cycle days 28, 29, 1, 2, 3, 4), as I had hoped to avoid taking Lysteda (heavy duty pharmaceutical). I was a little tired but the strategy worked.

    I am not really trying to avoid folinic, just fortified folic and wheat.

    I do feel lots better. had some up and down.

    may try to post my spread sheet.
     
  15. madietodd

    madietodd Senior Member

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    This is also useful because it tells me that I can't figure out how much methylfolate I should be taking from symptoms. I wouldn't know if I'm depleting.

    This is a concern now that I'm rethinking my supplements. After a week on 250mcg mb12, I stopped taking metafolin (other than 400mcg in one B-Complex). I immediately stopped getting low potassium symptoms. I went back to my low carb, protein and vegetables diet, and am feeling no worse than before this switch. Plus I'm getting bursts of energy (raking leaves). [I'm not drawing any conclusions from this - it's too soon and too complicated.]

    If I go by the SMP ratio, for 2000mcg hb12 I was taking 500mcg folates and eating a lot of vegetables. So I'm in the ballpark. Is there any downside, short or long term, to supplementing with too much methylfolate?
     
  16. Rand56

    Rand56 Senior Member

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    Two studies in healthy
    human volunteers independently demonstrated that a folatedeplete
    diet containing ;50120 mg of folate per d for 79 wk


    No wonder this did not make sense to me when I first read it. 50=120 "mg" of folate per day would not be a folate deplete diet. It would be a high folate diet.

    50 - 120 "mg" should read "mcg". Don't want anyone else to be confused scratching their heads like I was LOL.
     
  17. Rand56

    Rand56 Senior Member

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    Hi madietodd

    I think it's hard for anyone to know...atleast in the beginning....what the optimum dose of methylfolate per day should be. As far as the low potassium symptoms..I actually look at those as a good sign. Atleast I know healing is happening. As long as I have potassium on hand, I'm all good.

    Now your biochemistry might be different than mine but I had no adverse reaction whatsoever when I substantially upped my mehtylfolate dose per day. I'm not recommending you do this because you alone know what your body can tolerate. I'm just stating my experience of upping my methylfolate dose with no negative reaction. Thru trial and error myself...I know I get more severe healing and low potassium symptoms when I raised my B-12 amount too much too quickly. Moreso with the adb12 than with the methyl b12. I realize it's tough to feel worse with "healing" type symptoms when everyone feels bad to begin with. I look at it this way...I'll take some more short term pain to obtain more longer term better health.
     
  18. rydra_wong

    rydra_wong Guest

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    Um, I dont know if it's a downside exactly, but low folate is anti-cancer. That does not mean high folate is pro-cancer. It just means that cancer needs folate to divide and grow just like regular cells, so a folate DEFICIENCY (which may make you feel like crap) will also prevent cancer. Now I am readiing that catechol-containing polyphenols (such as in tea) use up COMT in +/- and +/+ genoty[es leading to 40-60% less breast cancer. I am concerned about this because I take 1g/day Olive Leaf Extract high in polyphenol oleuropein. This may be why I am not sensitive to methyls - the polyphenols sponge them up! But that would mean I am not getting my folate??? I mean short of cancer I WANT mfolate. So I am not sure what to make of all this. Here is one reference on this: http://cancerres.aacrjournals.org/content/63/21/7526.full

    Yes - I sometimes notice typos in abstracts that are most confusing.

    Rydra
     
  19. Freddd

    Freddd Senior Member

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    Hi Madie,

    I get the impression that wht you might want to be doing is leaning how to be more stable in healing. If you stop the metafolin and stopped getting low potassium symptoms then it sounds like you have lkely stopped the healing. Is that your intention?
     
  20. Freddd

    Freddd Senior Member

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    Hi Madie,

    You just barely begin to look like you are homing in on a state of healing and insteado of letting thinbgs stabilize and home in on healing you are running full speed away from healing now. Why are you doing this? It doesn't seem to make any rhyme or reasom.
     

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