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High Dosage methylfolate users

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by zzz0r, Apr 30, 2014.

  1. ahmo

    ahmo Senior Member

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    Happy to add that I've just decreased my MB12 dose. Now Mfolate 15mg; MB12 20mg; AdB12 3.3 mg; LCF 500mg. Looks like maybe I'll be healed before I run out of $$!:woot:
  2. caledonia

    caledonia

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    Just throwing this out there - I had already stated that methionine and SAMe could be useful for people needing huge amounts of folate, as those are downstream of folate and B12. Magnesium should also be included as it's a co-factor for making SAMe.

    A lot of us are deficient in magnesium due to weak adrenals causing it to leak out.

    So it's something like this:
    (methylfolate + methylcobalamin) + (methionine + magnesium) = SAMe (the methyl donor)
    whodathunkit likes this.
  3. ahmo

    ahmo Senior Member

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    Very interesting @caledonia. I haven't looked into methionine, figuring it would be rectified as methylation improved. I'm not mg deficient. I don't tolerate SAMe or ALA, or other sulfur supps. So I'm reluctant to try methionine. Any thoughts? Thx.
  4. caledonia

    caledonia

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    It should rectify with improvement in methylation, but it could also be a helper until then. If you did decide to try it, I wouldn't do much. Same with SAMe. Those both have potential to cause overmethylation if you take too much.

    I had a problem with ALA causing too much metal detox, so I discontinued. Then I also read about what Cutler says about it sending mercury to the brain if you don't pulse it like with his protocol. I don't know if that's a real thing or not.

    If you have problems with sulfur supps, you could have a CBS or SUOX problem. A CBS protocol or even just some molybdenum could help. Again, not huge amounts.
  5. ahmo

    ahmo Senior Member

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    Tx caledonia. I won't bother w/ trying it. I've found in the last couple days I'm not needing the aminos for sulfur/ammonia. Seems like another thing that's shifted since my major detox. Still using butyrate when I eat meat, but not the citrulline, arginine, ornithine, lysine, and if at all, only once a day.:)
  6. Kim C

    Kim C

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    Hello Everyone! I am new to the forum but have been lurking for over a year now and would like to thank each and every one of you for sharing your experiences, being courageous to step outside the box and help us all to stay strong and get better. You have all been a wealth of knowledge and inspiration!

    I am very fortunate to be in much better health than many here, but that does not mean it has not been a rough ride, and still is. I am better tho.

    Short story is I am compound hetero MTHFR discovered last July and was loosely diagnosed by my old doc as fibromyalgia. I'm 57 years old and did pretty well overall until menopause hit. Then gut went bad (well, got worse actually) and all symptoms got progressively worse.

    I am extremely lucky in that I have a great new functional med doc here in Maryland. Lots of great nutritional tests which go way beyond the norm and were very revealing (i.e. Not a single b vitamin in normal range, mg deficient in spite of regular tests saying ok, just to name a few) and I was a very healthy eater since my early thirties, but probably did not get enough protein and fat as I was always prone to overweight. Now I am still a bit too thin but have gained back 15 pounds and am 5'3" and 120. She runs a Nutraval, by Genova and not perfect but at least a guide.

    I have improved a lot but gastritis and gut still very bad although better. Currently I take 5-6 mg metafolin daily in divided doses about 3 or so hours apart. Started with tiny doses in feb. I take about 1000 mcg methyl b 12 in a couple of doses away from my Multi TD by Pure Encapsulations. Last Nutraval said I was topped up on b 12 at this dose. Folate too was in range at a much lower dose but I am still hoping it will improve the gut. My low back pain is very obviously gut related. It comes and goes now instead of being constant. Hair loss also when gut is upset. Stops falling when gut is quiet.

    Recently I added pepzin GI zinc carnosine to the zinc I was already taking and not sure if it is helping or not yet ... Might be a little, but still very food sensitive.

    The main reason I wanted to chime in is because I know for certain that fruit/veggie acids are the most irritating to my gut right now with some dairy foods being next, then, unfortunately, vitamin c which I need. Many here have mentioned issues with veggies, etc. and I notice that most veggies mentioned in this thread are also high in salicylates. I wonder if it is not the folate in the veggies which is causing the trouble for some of us, but rather the sals. My doc gave me a short list of meds which interfere with folate absorption and one on the list is meds with salicylates such as aspirin and many others.

    I tried to eat my way out of this stuff for three months by adding more veggies (I was already a good veggie eater) since I had a really rough time starting any sort of vitamin at first including tiny doses of folate. My homocysteine went from 9.8 to 9, and unfortunately copper went up too high and still needed zinc in spite of 22 mg sup. I used colostrum during those three months which helped a bit, and somehow I got to being able to tolerate more and more. I just kept trying every few weeks and finally now my body really likes the folate. My energy is good, skin better but not healed (lots of sores on face, hands, scalp) and sleep is better but still bad when gut gets upset. Lots of adrenaline at night to counter histamine when cortisol is at its lowest. Cortisol in range now but at low end at night. Assume histamine gets high from the food intolerances... Not really sure about that one but I avoid most of the "tested" intolerances (Alcat test).

    At beginning of May homocysteine was down to 6.6 but sure seems like it took a lot of folate, b12, tmg (1200 ish mg daily) MSM 1000 mg to get it there. I also take big dose of vitamin k 2 mk 4 and 7and some ghee. Also about 500 mg. magnesium glycinate in divided doses and 4 sunflower lecithin per day. Kelp for thyroid ( I only have half a thyroid since they threatened cancer .. What a bunch of crap but I was so desperate to feel better I believed them. I really crashed after the surgery .. No surprise there after discovering my mutations and since I have almost no glutathione). TSH is a little high at 4.7 but I feel ok and no autoimmune so no thyroid meds for now. I think probiotics since in my 20s saved me from autoimmune disease... Dunno.

    ANYWAY... Sorry for the long post, but was hoping something here might help someone and also wondered if anyone else was thinking about sals instead of folate being the culprit with the blocking. BTW, folic acid made me sicker and sicker the longer I took it. My old doc suggested a b complex when I went completely numb even though b12 was above the range. Sound familiar? LOL! It had methylcobalimin but folic acid instead of methylfolate. I had some relief within 3 days of stopping it.

    It has been a long and bumpy ride but again, I could not have gotten this far without the inspiration of all of you here, Rich, Freddd, etc. All of you are amazing!
    Hugs to you all!
    Last edited: Jun 11, 2014
    zzz0r likes this.
  7. ahmo

    ahmo Senior Member

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    @Kim C Thanks for your long post. You might try taking your Vit C in footbaths. I take this and many of my aminoes, minerals this way, works great, don't need any greater amounts than orally.

    I've looked at a few references re salicylates. In the second link there's a caution to avoid rutin, querctin, flavanoids. These have been very instrumental in lowering my histamine responses. The list of symptoms of salicylate reactions in the 3rd link includes many typical histamine responses. I don't know how to square these 2 bits of info.

    In any case, my only contribution to this conversation re salicylates is that rutin and quercetin, which I've now replaced w/ mangosteen, have been very helpful to me. And dropping the zucchini has allowed me to decrease my folate. cheers, ahmo

    http://salicylatesensitivity.com/about/food-guide/
    http://www.fibromyalgiatreatment.com/FAQ_salicylate.html
    http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates
    Last edited: Jun 10, 2014
  8. Kim C

    Kim C

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    Thank you ahmo! I had been doing the foobaths through the winter months since my gut was so bad thanks to another post of yours I had read but was not including vitamin c. Was glad to finally be able to stop doing these as they were messy etc, but it did at least keep my magnesium in borderline range. Was not adding c tho. I will try that, as I really think the extra c would be a big help to me. There is a little in my multi, but it is not enough. Thanks again!
  9. caledonia

    caledonia

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    I'm surprised the functional medicine doc hasn't had you do the 4R Gut Rebuilding program. This program was invented by the Institute for Functional Medicine.

    What kind of results do you have on the Nutreval in the gut section ( Malabsorption and Dysbiosis Markers)? You can do further (and in my opinion much more useful) interpretation of the Nutreval by using the Nutreval Interpretation Guide linked in my signature.
  10. Kim C

    Kim C

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    Thanks also caledonia!
    Most definitely have done the 4R and then some. And actually the disbiosis markers are not bad but amazingly got worse between my two tests 6 mos apart, which was before I started methylation supt. DHPPA and Hippuric acid both went up. Otherwise ok. I knew the gut was worse in spite of having a little better energy. So things were not healing. I also did the stool analysis CDSA which also was not too bad. I have no fungus or yeast problem. This was last July. So with this new test in May I switched probiotics from Custom probiotics 11 strain to Ultimate flora bifido max.

    I show a need for enzymes, but unfortunately brewers yeast came up as allergy on my Alcat and I react very badly to enzymes since they are grown on yeasts. I never ate brewers yeast, but I did take enzymes for several years when all regular gastro docs could offer me was Prilosec.

    I honestly think that lack of methylation was at the root of it all as I remember having stomach aches even as a small child. I lived this way my whole life. Thought everyone had gerd, LOL! Thank goodness I took probiotics right along since in my 20s as I think they really delayed my crash. Other family members of mine were not so lucky. I have lost both my younger brother and my mom due to alcohol and drug abuse.... Most likely they also had at least single snps. Dunno for sure, but both had bad guts, and my little sis does too now. I am trying to help her. She just had her MTHFR and homocysteine run. We are waiting on results but I already started her on the multi td to start. She has bi polar diagnosis and has had 36 shock treatments, 2 strokes (she is 50). Very sad how conventional medicine had failed her.
    Hugs and thanks! Kim
    Last edited: Jun 11, 2014
  11. caledonia

    caledonia

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    If you have ACAT and/or SHMT, those are known as the "leaky gut genes". Yasko suggests treating those at the same time as treating the gut. You would do bile salts for ACAT and folinic acid for SHMT.

    I had to keep taking anti-fungal herbs for candida until I did methylation, and then that cleared.

    One person on here reported an infection in the small intestine I think it was, that couldn't be touched by a 4R program. I'm not sure what their treatment options were. It sounded very difficult to fix unfortunately.
  12. whodathunkit

    whodathunkit Senior Member

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    @KimC, I have had low stomach acid and had to use enzymes for a while. I actually developed acid reflux because of low stomach acid, not high stomach acid. The undigested food would just sit in my stomach mixing with the what little stomach acid I had. It wasn't enough to digest the food properly, and it always took a long time to clear my stomach. And because the undigested food was mixed with acid if I lay down the mess would find its way into my throat, giving me reflux. Most mainstream medical doctors just don't get how that works. I used antacids for a long time until I finally hit on the doctor that convinced me to try the right brand of enzyme.

    Anyway, like you I never tolerated enzymes well (for whatever reason) until I started taking something called "Zypan" by Standard Process. I don't know if it's made with yeast, however. But you might try it. It's cheap so if it doesn't work it's no big loss. It was very mild but helpful at the same time.

    But why I'm really writing is to ask if you have ever tried TMG (trimethylglycine). It's a methyl donor that some people here use to help methylation. But basically it's just betaine. It's anhydrous betaine instead of betaine HCL (which is what most digestive products are) but the effect is basically the same. I used it for a little while when I first started methylation supps. Ultimately it put my GI tract into overdrive so I stopped using it after a couple of weeks, but it was helpful for a little while and it may help you. Research before you try, but just throwing it out there as food for thought.
  13. Kim C

    Kim C

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    @ahmo thanks for these links.
    Yes, sals was one of the first places I looked before finding my snps. Seemed like they were causing trouble but it was hard to tell as virtually everything I put in my mouth wreaked havoc. Anxiety, pain, dizziness, weakness diarrhea, etc.

    I have been unable to tolerate quercetin but may try it again since things are a little better now. Interestingly, (now don't laugh cause this might sound silly) but my two horses are both responding beautifully to methylation support. Many breeds are prone to metabolic disorders and lots end up with gut problems. One of my boys gets hives bi-laterally just like me, his mouth swells up like mine and his skin is very sensitive as is mine. He can't tell me if he vibrates or not. But in February I started both my guys on a similar vitamin/mineral program with methylfolate, and I also give him quercetin which does seem to help a little with his hives. He has not been able to graze the grass in years without getting sore feet (laminitis - very common horse problem) and now can do so all day long. No placebo effect there. These kinds of things make me hopeful. He has what I would describe as IBS with alternating constipation/diarrhea which seems a little better too.

    I have cut my veggies a bit too since I am trying to lower copper. Tonight I don't feel too bad. I think lowering veggies is helping something... Perhaps less gut irritation, or maybe the extra zinc is kicking in or perhaps less blocking... Wish I knew for sure. :)
    ahmo likes this.
  14. Kim C

    Kim C

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    @caledonia I appreciate your reply. I have not done anything like 23 and me but a functional med psychiatrist I saw did a few other genetic tests and said I am prone to metabolic syndrome. I don't have them handy but they aren't the ones you listed. She also reassured me that I just needed some nutritional help and methylfolate.

    On a good note, my inflammatory markers are all very low so I don't think I have any sort of infection... At least I hope not. I don't feel sick. Plus I was treated for Lyme for 5 weeks after my surgery with quite the cocktail (my Lyme is dormant, I only have antibodies from prior infection - another mishap). Hopefully I'm ok. Will never do THAT again. Whew!
  15. Kim C

    Kim C

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    @ whodathunkit I think you nailed this one. I think my stomach acid was low, probably for most of my life due to low zinc (which makes me wonder about pyroluria questions from another thread - one nutritionist said she thought I had this issue. Dunno but my zinc always tests low in recent history on 2 nutravals in spite of supplementation and recent regular blood work showed copper and zinc both in mid range but at one to one ratio.)

    I am using jarrow TMG powder with each meal, as was recommended by the same nutritionist above. I certainly don't think it hurts! It was very irritating to my gut at first tho. I just kept trying every few weeks until I could finally tolerate it without huge anxiety setting in. My transit time is quite quick though and lots is undigested but this was the case before adding the TMG so not sure why that is happening. The three gut doctors I saw just look at me as if I am stupid. If I can't get things resolved soon I may have to see yet another gut doc but my functional med gal has a referral who she says "gets it".

    BTW my anxiety, which had been severe has been improving in line with what feels like some upper gut healing. I hardly have any now. Looking back over my life I can now see that I also had mild anxiety periodically throughout my life, although I did not recognize it back then. With this at least I know I am on the right track. Methylation support is most definitely helping this, as improvements came rapidly once I was on the high dose of folate with the other cofactors in place.

    I will try the Zypan. I can get the standard process supps nearby or from my holistic vet. Worth a shot and thanks for the tip! :)
    whodathunkit likes this.
  16. Kim C

    Kim C

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    @caledonia
    I just went through your info on Nutraval interpretation and all I can say is FANTASTIC! Thank you! That led me to the info on KPU and now I am more curious about this than ever. I am doing quite a bit of the protocol in a milder form tho, and listening to my body as best I can.

    Interestingly my neuropathy symptoms in hands and feet have worsened a little since increasing my zinc although gut feels some better on it so am keeping it. ( I am at 54 mg total). I am going to try to add in ALA again since previously I did not tolerate it. What a great help your time and effort are to me and others! Hugs to you! :)
  17. ahmo

    ahmo Senior Member

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    @Kim C Here's some pyroluria info. Also Known As HPU, KPU. Can be confusing. I self-diagnosed from the questionnaire. Klinghardt point out in the vid that lab testing is finicky, difficult to get it right. The list of symptoms in the questionniare described things I'd struggled with throughout life. When I started the supps, life changed. :)

    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria

    In all porphyrin disease, HPL is found in the urine of the patients as well.
    http://www.klinghardtacademy.com/images/stories/powerpoints/hpu 2009.pdf

    Klinghardt: Lyme, Autism, EMF, Pyroluria
    http://www.youtube.com/watch?feature=player_detailpage&v=-z3kRDYcvhA
  18. Kim C

    Kim C

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    Wow @ahmo this was great! I do seem to be a fit for quite a few of the symptoms too, although I have not been able to watch the 2 hr video just yet. I had researched some of klinghardt's Lyme protocol when a Lyme lit doc had diagnosed me as positive, however I now believe that was a mistake, as I did not have antibodies showing active infection over a period of 3 years, even with treatment when supposedly active antibodies kick back in. In the end, all I ended up with was a ruined gut and no friendly gut bugs left. I could not detox anything, including the antibiotics.

    What has been effecting me has been life long beginning when I was a toddler long before I ever had Lyme. So low methylation and HPU much more of a fit. I know at least a few friends who have some Lyme like symptoms (such as ringing in ears for example) who have tested negative for Lyme with the proper C6 and western blot, so again, much more likely to be related to low detox and glutathione.

    May I ask you how much zinc and b6 you are taking? I find it very interesting that both of these were low on my Nutreval in spite of supplementing with normal doses. I did not stop the sups before testing and in spite of supplementing 22 mg zinc picolinate and 20 mg P5P I still was barely in borderline range for these. I have since increased these by the amount suggested on the test to include the original dose, then recently added the extra zinc carnosine for a total of 54 mg.

    I am seeing my doc tomorrow and will discuss this with her as she is concerned that my zinc and copper are at 1 to 1 ratio on standard testing. She just checked it as a ballpark... She knows that testing is not the best but just trying to get some idea and I guess make sure I was not at a toxic level, as she felt that the 45 mg of zinc I was taking was pretty high. She told me to increase by 10 mg, but perhaps I need more?

    I am beginning to see some improvement in my skin since adding the extra zinc carnosine, and my gut is a little calmer although I have a long way to go. So now I wonder if I need to stay on the high dose of folate (5 to 6 mg daily). I certainly am a TON better than I was a year ago, that's for sure, but the folate gets pretty expensive as you know, and if I don't need that much....if the zinc and B6 are what would help me more.... Gosh, they are both cheap!

    Thanks again for these links! :) K
  19. ahmo

    ahmo Senior Member

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    @Kim C
    I had no idea for 10 years of ME/CFS that tinnitus is an adrenal symptom. Mine decreased with each step of my progress, from a high point when I could barely attend to conversations. When I recently cleared my adrenals I woke up to Silence! In the last weeks I have a low hiss that comes and goes according to how my adrenals are feeling. Today, the hiss + a few other returned symptoms have told me it's time for coffee enema to clear my liver:grumpy:

    Glad the pyroluria info is helpful. I'm currently taking only 50mg zinc picolinate, 33mg P5P (Nutricology). Initially I took 200mg zinc, in divided doses. This was in part to help detox other metals. Immediately after my recent dumping of toxins I self-tested for a handful of zinc caps, about 10, also selenium. I interpret this to have been replacing the toxins in the critical pathways, as outlined by Klinghardt. Toxic metals insert themselves into places that should have zinc.

    Yes, zinc is, fortunately, inexpensive. My understanding, particularly from Freddd, is that there is at least a year of rehabilitation following initial healing of methylation pathway. I expect to need high folate and B12 for at least that long. My genetic profile specifically notes a need for extra B12, tho I don't know of a specific reference to folate. I'd love to be able to decrease my dosage, but do not know if that's going to happen. When I asked my GP if there was any folate by rx here, he told me there was rx folic acid:bang-head: So...as long as I can afford my supps, my quality of life continues to improve. Best to you, ahmo
  20. Kim C

    Kim C

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    Thanks @ahmo. No doubt the adrenals get hammered in all of this, especially for those of us who have been suffering for a long time. That was actually the first thing which was discovered about me in my journey ... That cortisol was in the pits. Nothing I did and nothing prescribed (glandulars, etc) would get my level to come up until I made a major change to my diet ( added much more animal protein and began taking zinc - a fit for what klinghardt says re hormones I think). Within a month my cortisol was back in range, although still lower than I would like.

    Those poor little glands sure take a beating, especially when they have to also crank out adrenaline to counter the histamine responses too. And yes, my ear ringing was probably my first symptom when things began to get particularly bad. Unfortunately they still ring, although a little less so lately so I think I am on the right track.

    I just began folate in February, so most likely will have to stay on it at a big dose for a while, and my dose is small compared to yours so I guess I should be grateful, LOL! Can you not get Deplin there in Australia?

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