1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

High Dosage methylfolate users

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

  1. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    I also wanted to mention that most people have found when people take amino acids that there body adjust to them and they start sliding back to their original spot. I really try hard to rotate them so the are still effective.
  2. whodathunkit

    whodathunkit Senior Member

    Messages:
    425
    Likes:
    247
    @place: what time in the afternoon? You don't find that the afternoon dose affects your sleep?

    I took an extra capsule (500mg) this morning but in the past it stimulated me so I'm leery of taking any of it past about noon or so.
  3. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    I take it around 2:00ish. I would never take it past 4:00 or it would keep me up.
  4. zzz0r

    zzz0r Senior Member

    Messages:
    131
    Likes:
    17
    As I have been constantly trying to find people that have similar snps with me I am observing up until now that 100% of people that have both COMT homozygous mutations combined with MTHFR 667C have problems tolerating methylfolate.

    There are cases that do not need to have homozygous COMT mutations, people could just have heterozygous snps and still have problems with methylfolate.

    We are still looking for the reason why. As there is no research to what is going on still, I find that the most helpful thing I can do is talking to people and see how they are dealing with their situation. There might be a person out there that actually managed to overcome this.
    whodathunkit likes this.
  5. caledonia

    caledonia

    Messages:
    2,877
    Likes:
    1,479
    Cincinnati, OH, USA
    zzz0r likes this.
  6. acrosstheveil

    acrosstheveil Senior Member

    Messages:
    209
    Likes:
    55
    i do not do well on more than 2 mg of methylfolate a day. anymore than that and i'm an overstimulated, ocd mess. i'm heterozygous as well. tried taking tons of potassium and it doesn't help.
  7. Dfox

    Dfox

    Messages:
    60
    Likes:
    8
    Hi Ahmo: I have been doing a type of protocol for a while now, although I am no making any progress right now. I am taking about 5mg mb12 sublingual and 900mcg folate, and 5mgab, 30mcg t3 and I'm taking 1500mg Lcarnitine tartrate. I am also being trying to wean of a benzo, and antidepressant. Well, at this rate I'm going to wind up in the hospital from what I think is "histamine" response. I have asthma (sob), heart palps, and burning all over my torso, but mostly my bottom! Last night a mosquito bit me and my hand swelled up, and was still swollen until recently. It looked like someone had pumped water under my hand. I have been also taking tyrosine and 5htp to assist with sleep and depression. I have started taking high doses of quercetin which I believe mb helping with the "allergies". I have spent fortunes with doctors who say they understand this, but to no avail. Will Freddd give recommendations or is there someone you (or others) know of. Any suggestions would be appreciated.

    Thanks, Dfox
  8. ahmo

    ahmo Senior Member

    Messages:
    1,149
    Likes:
    740
    Northcoast NSW, Australia
    @Dfox, Freddd hasn't been posting since February. I'll make some brief comments, but I'm still managing the after-effects of detox gone wild after I stopped the zucchini which was blocking my folate w/ folinic, and my brain's not the best.

    First,
    ...I'd suggest going to L-Carnitine Fumarate. I'm not the only one to find other forms of carnitine ineffective.

    I don't know how to address that, in the moment. Might think of a better response tomorrow.

    Maybe this vid from Dr. Theoharides makes some sense to you. I don't know why you're taking these things, but Dr. T, as mentioned in next par, talks about effects of histamines on brain:

    ‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD
    https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

    Do you have some sort of histrory of histamine issues? I doubt if this has arisen out of the blue. Check your diet and stop all foods that contribute. See list below. I've now switched from quercetin to mangosteen, as well as royal jelly and rutin. Rutin seems to be my first line, when I've gotten a histamine response, it's helped immediately. It's also what mast cell expert and pharmacologist Dr. Theoharides has formulate to cross blood brain barrier and stop mast cell histamine responses. cheers, ahmo

    http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
  9. Phred

    Phred Senior Member

    Messages:
    121
    Likes:
    38
    Both my daughter and I are homozygous for both COMTs. She's homoz and I'm hetero for MTHFR C667T. I have her on 2.4mg folate (probably needs more) and 2mg of mb12. I was taking 26.4mg of folate and 19mg of mb12. I've reduced to 16.8mg folate for now because of histamine issues. I'm trying to find the balance but I think it's environmental issues affecting my histamines.

    I will say that when I first started taking metafolin I couldn't take more than 2.4mg a day. I would get raging headaches if I tried to take more. Then I titrated up slowly at first. Then all of a sudden I could increase by a couple of mg a day. I believe the headaches and inability to titrate past a certain point were just the paradoxical folate deficiency that Fred talks about.

    I'm not saying others should do what I did, just relaying my experiences with folate and mb12.
    zzz0r and whodathunkit like this.
  10. Dfox

    Dfox

    Messages:
    60
    Likes:
    8
    Thanks Ahmo: I have been looking at the links you provided and appreciate it very much: I have one question that perhaps you or someone else can answer: Is there someplace on the PR site here where I can go and get the most CURRENT Freddd protocol, with suggested supplements and perhaps "watch this or that". It seems that as I have followed threads, I get off on rabbit trails, and then get very confused.

    I have never had much issue with histamines "that I know of" until recently, but need some big time help with all of the whole scenario. I seem to be understanding that you don't eat folic rich foods while doing the quartet? I see some posters talk about watching their ph levels? This is all very overwhelming, I'm thinking I may need to "start over", but I'm not sure.

    I did try to talk to Caledonia's doctor but she has a wait until August. I'm sorry that I am so frustrated with trying to get help and figure this out.

    Thanks, Dfox
  11. stridor

    stridor Senior Member

    Messages:
    322
    Likes:
    209
    @whodathunkit
    So, how's the gut and adjustment with folate/12 coming along? As I have said in other posts, I take high dose mB12 but don't measure my folate intake. I just open up the capsules and pour into the buccal pouch. I don't absorb it properly and so this is cheaper. I am slowly increasing my intake and now need in the 4-5 capsules a day range to get what I need.

    I think that some things we can top-up and then cut back on. Adenosylcobalamin is one of these although many of us maintain intakes because it has anti-inflammatory properties. I will find my dose of mB12 someday. I envisioned staying on high dose for a year to allow for full healing. I would like to get down to just the 2 x 1 mg injections a day.

    I am TCN2++ and have CCSVI (blood going the wrong way in the veins of the neck causing congestion/pressure at the blood-brain-barrier. Something that probably most of us with ME have, but no one talks about). CCSVI may mean that the 'active-transport dynamics' at the BBB are not up to snuff. At this point I am relying on diffusion to get B12 where it has to go and I accomplish this by flooding my body with it.

    Is this fact or science? Nope. Just a guy trying to get well noticing that the more mB12 he took the better he felt and given the confidence to pursue the idea by seeing the high doses that some of the rest on this site take a la Freddd's suggestions. brad
  12. zzz0r

    zzz0r Senior Member

    Messages:
    131
    Likes:
    17
    everyone ofcourse are different and many things that could be improving someone would actually hurt another person. I am mostly focusing at methylfolate because it is an element that gives a large variety of symptoms to people.

    methylcobalamin(b12) could be tolerated in high dosage or it could not be tolerated by someone and that individual person will have overmethylation symptoms (mostly anxiety) but that could happen with any methyl donor not just mb12.

    The real key is methylfolate because the variety of symptoms at different dosages may reveal other neurological problems, intolerances or candida issues or just detox( which is something that I don't like to claim it exists, at least in such a magnitude that could cause severe symptoms).
  13. whodathunkit

    whodathunkit Senior Member

    Messages:
    425
    Likes:
    247
    Hey @stridor, been meaning to post about this but have been trying to figure a few more things out first. Thanks for giving me a nudge.

    You may be glad to hear this: I have cut back on my mB12 intake significantly. I was up to 5mg injectable a.m. plus some 4-5 extra 5000mcg sublinguals when I took doses of mfolate later in the day. While these huge doses did me good for a couple/few months, over time I noticed I wasn't sleeping as good. So I cut back on the mB12 a couple weeks ago to see if that was it, and my sleep has come back.

    I'm inferring from this that maybe those big doses of mB12 "topped me out", so to speak, and my body let me know about it. I guess I got enough of it in my system that the years' long deficiency was made up. Now i'm back down to about 1mg injectable in the a.m. and only a couple more sublinguals later in the day with mfolate. I may be able to live without the injectable but don't want to try that yet. I still seem to get more out of injectable than out of sublingual at this point.

    So I think you're right, there is probably a "sweet spot" dose of mB12 after deficiency is made up, but it will vary from person to person, depending upon snps and other things. Hopefully you'll get there within your year.

    You're also right that we can and should cut back on things as we progress. My savings account really likes this idea. :D

    Like you, I have also cut back on the adB12. I take about 1/4 capsule per day (still working my way through an old bottle of caps not the newer sublinguals). If I accidentally dump a little more I don't sweat it, though. I really like what adB12 has added to my physiology and will take it for the rest of my life (or as long as it's available). I agree that it's crucial.

    I upped my intake of LCF and am still liking that. Up to 1000mg of that per day now. I'm going to keep it there for a while. I may try to go to 1500mg soon but not sure I need any more than that. If even that much.

    The methylfolate I'm still having some trouble taking down my dose. I had reached a point where I had begun to take it down a bit, and then I tried some SAM-e for a couple of weeks. This seemed to destabilize me somewhat and I began having more epithelial symptoms again (minor bowel issues, minor dermatitis coming back, etc.). So I'm back up to 26.4mg/day again, but can't quite seem to stabilize. I do better with a bit more than that. But my wallet is *groaning*.

    So now I'm trying to figure out what's driving my methylfolate intake. I don't eat a bunch of veggies or stuff with folinic acid in it, and I don't eat stuff that has folic acid in it, either. Here and there, but not daily, to the point where it would chronically drive folate intake.

    I don't take anything with niacin in it. I take my B vitamins piecemeal, and all active forms of them. But I found that even small doses of NADH (active form of niacin) don't agree with me. Someone (think Leopardtail) suggested I might have ammonia issues since I don't tolerate niacin. Do you know anything about that?

    Of course, it could be that I just need to heal some more. I have given my body a beating over the years and the female problems I want to address are basically tumors embedded in epithelial tissue.

    Without a genetic test I may not be able to do much more. I still can't bring myself to put my DNA into a database, though. I've read too much dystopic science fiction, I guess. Paranoid in that regard.

    Now that I've got the dermatitis patches on my hands cleared up again (skin looks normal today), I'm going to take another stab at stepping down my dose of mfolate.

    I know a little bit about CCSVI but not that much. But like you, I've read enough to wonder if it's a bigger problem than anyone in the mainstream medical community understands at this time. And what to do about it? I take K2 and a combo of supplements that are supposed to help decalcify arteries and veins, but beyond that what can we do to address it?

    What little I know about CCSVI I learned because of its possible role in hairloss. I lost about 2/3 of my volume of hair about 10 years ago. Thankfully I had enough hair for two people, anyway, or I'd be in really bad shape right now. As it is I'm not in great shape hair-wise, just not really bad. Hairloss runs in my family, as well as poor circulation on one side and CAD on the other. How is your hair?

    Also, how were you formally diagnosed with CCSVI?
  14. Dfox

    Dfox

    Messages:
    60
    Likes:
    8
    Hi, just FYI, I was diagnosed w ccsvi a few years back, but never had the surgery. I talked to one dr here in my town who used to assist dr Siskin w his surgery. He said he no longer recommends it but usually suggests ppl look at chlamydia pneumonia treatments w pulsed antibiotics. He has seen better results long term with that.
    Dfox
  15. Dfox

    Dfox

    Messages:
    60
    Likes:
    8
    Hi Caledonia: is there some place on the PR site to find Freddd's most recent complete protocol with supplement recommendations. I think it was your dr I called April Hauge, and she dies not have an opening unt August. This is so danged frustrating. What happened to Feddd?
    Thanks dfox
  16. caledonia

    caledonia

    Messages:
    2,877
    Likes:
    1,479
    Cincinnati, OH, USA
    I would like to know that information too. Freddd keeps promising some kind of software that guides you through the protocol, but he hasn't completed it to my knowledge. Maybe that's what he's working on now while he's away?

    I saw a post here on PR that summarizes things: http://forums.phoenixrising.me/index.php?threads/freddd-protocol-2014-cliff-notes.28718/

    The How I Recovered blog has this: http://howirecovered.com/active-b12-therapy-faq/

    I haven't really sat down and reviewed everything to see if those are good summaries.
    =-=-==-=-=

    I'm not seeing Dr. Hauge, that was Greenshots.
  17. whodathunkit

    whodathunkit Senior Member

    Messages:
    425
    Likes:
    247
    @Dfox: so that doctor thinks there's a microbial component to CCSVI, something left over from a chlamydia infection? I've read about some kind of microbial/parasite connection, but not in-depth. Something to do with biofilms, I think.
  18. zzz0r

    zzz0r Senior Member

    Messages:
    131
    Likes:
    17
    I would also like to hear from people that have been diagnosed with lyme to see how they react to methylfolate
  19. stridor

    stridor Senior Member

    Messages:
    322
    Likes:
    209
    @whodathunkit
    That is good news about the B12. I am past the point where I notice improvement with the morning injection. So I must have achieved some level of "steady state". I'll keep going for now. The brain-fog has improved significantly but it still present and I have my fingers crossed that my last year of Hg chelation or this high mB12 trial will retire this most annoying symptom.

    When I was sent home from work "incapable" in 2012 I read up on OI as this was the symptom that made it impossible to work. I read that it was related to "a measurable blood flow issue" to the brain. I wondered what that meant and decided to see if I had the stenosis that people with M.S. get treatment for. So I faked a couple of symptoms and got tested. They did an ultrasound of my neck.

    I can't find the quote, but Dr Cheney said that in a small study that was conducted, over 90% of people with ME have some degree of CCSVI. I don't meet the full criteria as thankfully I only have it on the left side. His theory was that it is the result of impaired tricuspid patency due to mitochondrial problems in the heart.

    I still don't know whether CCSVI is responsible for OI. It is still my favourite theory given the heart has to work harder while standing and this would put greater demands on sick mitochondria which could aggravate problems with a weakened tricuspid (?) My only reservation, and I am not sure on this, is that we should have some kind of heart murmur to go along with this. Or at least it seems that way to me. And another problem with this theory is that we can walk longer than we can stand. Surely the heart has to work at least as hard to walk....

    So fix the mitochondria and we fix the heart and will improve circulation to the brain.

    I have lost hair - that photo was early in the year that I got really sick - but I am on testosterone which also does not help matters. My biggest problem is some psoriasis on the scalp and folliculitis that is tied in to food sensitivities but it is such a delayed response that I have a dickens of a time narrowing down all the offenders - peanut butter is one.

    As I said here before, I am not that unique. IMHO some here are taking huge doses of mfolate because they can't absorb it well.
    I have no idea how much mfolate it would take if I had to swallow capsules. I have taken up to 9 daily and I could not tell much of a difference from zero. Whereas, I can notice a big difference with even one capsule taken sublingually.

    I don't absorb it to any significant degree when swallowed. You know that my colon was diseased and had to be removed. Well, the rest of my gut is no hell either. I blame it on decades of low glutathione and gluten exposure. But how do I know?

    Anyway, I take mfolate in the buccal pouch. Dosing is still increasing. I don't count capsules, I take what I am instinctively led to take. Yesterday it would have been close to 5 mg and some days it would be closer to 3 mg. I tend to dose small but regularly throughout the waking hours. Sometimes not so small and I am led to pour in most of a capsule. I don't even think about it any more, I just open the capsules and pour in whatever I pour in.
    Cheers, brad
  20. stridor

    stridor Senior Member

    Messages:
    322
    Likes:
    209
    @Dfox
    Yes, that is a possibility. I was prone to illness as a child and had many high fevers - at least once to the point of convulsions - and a couple of times to the point of delirium. As a young man I had Q-Fever which can cause valve damage and had a mild heart murmur around that time that disappeared after I biked through Europe.

    Perhaps infection creates a susceptibility that ME exploits. brad

See more popular forum discussions.

Share This Page