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Strange reaction to methylfolate

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by skboren, Jun 28, 2015.

  1. skboren

    skboren

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    I've been on various methylation protocols since late 2013. In early 2014 I experienced my first side-effects from methylfolate. I've been reading like crazy on this forum about Freddd's active B12 protocol. I was really grateful to find out about the link between B12 and potassium.

    I was experiencing a feeling of dizziness as though not enough oxygen was getting to my brain, as well as pain in my fingers and toes. It took me about a month to realize methylfolate was the cause. I took the dose down from 800mcg to 400mcg, and that resolved the dizziness and finger/toe pain.

    I was also experiencing blood pooling in my feet, which my primary care doc diagnosed as venous insufficiency. It was worst first thing in the morning. My feet would turn blue or purple after a few seconds of standing or sitting still. The only way to keep the blue and purple feet and pooling blood away was to walk around. It would feel, when I first started walking after sitting and standing, like I was walking on glass for a few seconds, until the blood worked it's way up. At the worst, I was getting really painful sores on a couple toes. It took me a year to realize the venous pooling was connected to methylfolate, too. I took the dose down to 200mcg, and the feet became less painful, but blood still pooled.

    I've since stopped the methylfolate completely, just in the last month, and my feet have almost no pain, though blood still pools in them and they still turn blue, albeit a lighter blue than before.

    I don't read these symptoms on Freddd's symptom list that corresponds to different nutrient deficiencies, so I have no idea what to think.

    Interestingly, the dizziness and blood pooling issues seem to occur regardless of the type of folate, whether methylcobalamin or folic acid. (I haven't tried folinic in a while.) My serum folate is crazy high, and RBC folate is in the upper-middle range, so I look folate-sufficient in blood testing. I am A1298C heterozygous, so no severe MTHFR mutations.

    In April, I developed tingling in some fingers and toes, which spread to hands and feet in May. Now I have a loss of sensation in a stocking/glove distribution, and feeling of transient sunburn in hands, feet, arms, legs, face. Also, my feet feel very cold much of the time, much colder than they actually are if I feel them with my hands. I have no idea what the peripheral neuropathy has to do with methylfolate, if anything. If I go by Freddd's symptoms list, this would seem to reflect methylcobalamin deficiency, and yet my serum B12, MMA, and Hcy are all fantastic. Still, I'm upping my B12 in hopes of having the peripheral neuropathy resolve.

    I wondered if anyone has any idea why methylfolate (or folate in general) would cause blood to pool in your feet, and dizziness like your head lacks oxygen. Has anyone else experienced that? I'm at a loss, since the venous insufficiency isn't mentioned anywhere as a methylfolate side-effect, but in my case it's definitely related in some way to methylfolate. Thanks for any input, thoughts, help! I don't s'pose @Freddd still posts on here and helps people?! That would be amazing.
     
  2. sunking101

    sunking101

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    I'm getting blood pooling or edema in my lower legs and the tingling sensations in my feet/fingers. Really worried about it as I had nothing wrong in this regard a few months ago. I was only taking a coenzyme B Complex and later added in sublingual MB12 (a small dose) and methylfolate (a very small dose). I stopped all of it a few days ago and my lower legs are worse than ever. Not sure what to make of it!

    In my post similar to yours, Fredd said to up the methylfolate and I'm getting close to trying that. I just wanted to be symptom free again in order to reassure myself that this was 'just' a methylation protocol symptom before starting up the protocol again.
     
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  3. skboren

    skboren

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    Thanks, sunking101! Does that mean the blood pooling and tingling is resolving now, with your being off of everything?
     
  4. sunking101

    sunking101

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    No it isn't! I hoped it would all be out of my system in a few days but I suspect that my methylation cycle which has lain poorly functioning for decades is now 'haywire' and it will take some time to simmer down again. It would be interesting to know how long this might take if anyone knows. I can tolerate anxiety, fatigue and IBS etc but cardiac/circulation symptoms are heapum scary.
     
  5. skboren

    skboren

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    Heapum scary is right. It's at least interesting and a tad comforting to know that at least one other person is experiencing something similar.
     
  6. sunking101

    sunking101

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    Yes I'll agree that but having searched for hours & hours, it isn't a recognised symptom and only Fredd really mentions it because he suffered from edema in his legs. It is a less well known feature of low potassium and I'm loading up on that. I *think* it helps matters but haven't been able to prove that conclusively yet. Perhaps Fredd is right and that this is a symptom of insufficient folate. You however state that you do better on less, so it's a strange one for sure. I just wanted my lower legs to return to normal again before I resumed with the protocol. Sadly that isn't showing any sign of happening as of yet! It's scary what an out of kilter methylation cycle can do once it has been tampered with. Healthy people can pop these pills with zero side effects and they often notice nothing whatsoever, even positive.
     
  7. skboren

    skboren

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    Potassium seems like a good avenue to pursue. I'm eating potassium-rich foods but I'm only supplementing about 1000mg. Freddd says many people need 2000-4000 mg. I wonder what would happen to our feet/legs if we increased the potassium significantly? I tested very low in potassium in hair and urine tests, and low-normal in serum. These symptoms do make me feel that maybe I shouldn't have tried the methylation protocol in the first place, in case I've somehow done irreparable harm! But I think I'll try increasing the potassium, and see what that does. I'm glad you mentioned it.
     
  8. sunking101

    sunking101

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    I concur. Imagine being stuck with these circulation issues :-/
     
  9. I think this is my first post ever, and I'm a year late (I wonder how so many of these things turned out!...), but I've read a lot of these posts and experimented with the "Freddd protocol" for at least two years, making all the usual beginner mistakes (thinking, incorrectly, that I might be an exception to the "avoid whey protein" and other glutathione precursors advice; afraid to increase doses; afraid to take large enough amounts of potassium when needed; initially starting out with folinic acid instead of L-methylfolate; etc.) and learning that -- at least in my case -- sometimes fear of the unknown is the biggest enemy of progress.

    Anyone can feel free to correct me on anything. I'm stlil learning myself.

    I also know some people seem to do better on a different protocol with B-2 and manganese and probably other things. I haven't looked into that one (much) because I've gotten good lab results (chiefly much lower "MCV", from high to mid-normal, indicating healthier red blood cells) and some quality of life improvements -- including being able to lift a suitcase without suffering with days of muscle soreness and extra fatigue afterwards -- from following Freddd's advice so far.

    I'm also "only" heterozygous for the A1298C mutation and fine on the other one (but don't know much else about my DNA snps). But Freddd has noted that results from the protocol don't seem limited to people with specific mutations or lab results.

    If I understand correctly, it's more like if you have a lot of "medically unexplainable" symptoms and you respond in ANY way to ANY of the "Deadlock Quartet" supplements (methylfolate, methyl-B12, adenosyl-B12, and one of 2-3 forms of carnitine)--there's a good chance *something* in your genetics or environment is making you deficient in one or probably more of those things.

    One thing it looks like the posters above might not have considered is "Donut Hole" or "Paradoxical" Folate Deficiency. You take some folate, and then end up with symptoms that are actually a result of a DEFICIENCY -- but because you associate them with *taking* the supplement, you think the problem is too much, rather than too little.

    The mechanism, as I've read Freddd explain it, is that a certain amount of active folate and/or B12 can turn on or "start up" more healing than it can finish. So it's like the cells get a taste of what they've been starved of, then start using it so fast they suck it up like a thirsty sponge -- so other parts of your body or other processes end up with LESS than they had before you took the supplement. (I believe this can also be true with potassium -- meaning adding it might "paradoxically" make you need even more. I'm 100% convinced the others can cause potassium to be used up quickly).

    Also, I think it's quite possible, and probably common, to need to increase several things at the same time. (More on that later).

    That could explain why stopping the methylfolate, contrary to expectations, didn't eliminate the symptom.

    If correct, stopping would simply continue the deficiency state - whereas *increasing* the dose might help, but you would have to increase it *enough*, which is a term that seems to be individual to each person -- and the needed amount might go high very quickly. Based on what I've read and my own now pretty extensive experience, I sometimes suspect you almost can't go too high on these things as long as you have enough of everything on hand, especially potassium. The body just excretes what it doesn't need or uses it later (at least of the proper, active forms. Folic and folinic acid, vegetable folate, and cyano- and maybe hydroxycobalamin are common exceptions that can accumulate and block the active forms).

    Another possibility is there is either too little folate to complete "operations" turned on by B-12, or too little B-12 to complete operations turned on by a dose of folate.

    And of course there is the need for more potassium. I seem to be on the high end of that. I take a minimum of 2400 mg (elemental) potassium as slow-release potassium chloride every day and sometimes add more immediate-release potassium if I get muscle twitches.

    So considering that the problem might be too little and not too much is my contribution to the above, for what it's worth. Now more of my story...

    ****
    I recently made a big mistake and drank several bottles of "protein water", made with whey protein isolate, over a couple of days. That brought all my old symptoms back (fatigue, IBS, chronic pain, cold symptoms, etc.) and probably made it so I'm essentially starting over with the protocol - Freddd says the resulting glutathione binds the B-12 in your body, which then flushes it out, leaving you in a deficiency state similar to what you started with. Stupid!

    My potassium need had been relatively stable for some time. Then *boom* simply continuing with my same high doses* caused me obvious potassium deficiency symptoms: random muscle twitches all over the body, and a VERY rapid heart rate just lying in bed (maybe 130-140 bpm...). Fortunately I knew about potassium and had experience a lesser version of that many times before, so I kept taking it until things felt under control. I didn't keep track but I took at least half a #180 bottle of 200 mg potassium (elemental) capsules -- so 20 GRAMS of potassium yesterday!

    *30-45 mg per day of l-methylfolate, 5-15 mg of methylcobalamin, 8-16 mg of adenosylcobalamin, and 500-2000 mg of l-carnitine -- currently as fumarate but I haven't quite decided if I'm an acetyl- or a fumarate person -- have also tried the "GPLC" and l-tartrate forms. I thought none of them had any obvious effects, but THIS time, the fumarate caused massive anxiety not long after the first dose -- so maybe I have my answer! Thankfully, "pushing through" that seems to have worked: anxiety now nearly back to normal a few days in.

    I knew the potassium wasn't too much for me because (A) I finally got better within several hours--not worse--and (B) no diarrhea from it (IBS-D is one of the things taking enough folate seems to help me with, although I haven't quite found the balance yet).

    Now I'm wondering if anyone has ever tried just taking massive doses of everything in the deadlock quartet and potassium (with sufficient cofactors, etc.) and gotten a good result. Because the main problem with increasing things more gradually over time seems to be that one thing causes a deficiency of another (and worsening symptoms), and the whole process can take so long it feels like death by 1000 cuts.

    I guess if the problem were simply one of "filling up the gas tank", that should work. But since healing itself can be very unpleasant (another gem from Freddd) and presumably takes some time, perhaps you can't really cut the process short so much that way. But if I knew it wasn't *dangerous* to e.g. spend several days taking 105 mg of methylfolate in 7 divided doses (I use 15 mg "Extrafolate-S" caps), alternating 10-15 mg each of sublingual methyl- and adenosylcobalamin with each dose and taking 500 mg of l-carnitine a little while afterwords, and as much potassium as I needed, THEN gradually go down until I couldn't reduce more without stopping the healing or getting old symptoms back--then maybe I'd at least cut short the amount of time my body spent dealing with alternating induced deficiency states?

    (I take or have tried -- also in different combinations and dosages -- sam-e, d-ribose, TMG, different forms of carnitine, the cofactor vitamins and minerals, fish oil, lower and higher doses of the other (active and "inactive") B-vitamins, lecithin - and lots of other things). I'll add that I also have hypothyroidism for which I take T3, and probably low-functioning adrenals (which seem to be very gradually getting a little better on the protocol).

    I'm diagnosed with chronic fatigue syndrome (I have to work from home and only part time), fibromyositis (only "2 tender points" but certainly constant, chronic muscle and other body pains), and I have frequent stuffy noses and sore throats, IBS, depression, anxiety -- and I get "brain fog", but much less on the protocol before I decided to experiment with whey... I also had a nearly identical kind of crash a couple years ago when I tried liposomal glutathione, so I should have known better! The protein water just seemed like a source of protein for a long road trip that was unlikely to cause diarrhea because it had nothing solid in it, and I'd "gotten away" with using whey periodically before -- although in hindsight it might have slowed my progress considerably so I probably should have avoided it entirely. *sigh* :)

    I'm a little "shy", having not posted much in internet forums before - so I'm intentionally taking the risk that nobody will respond to this (or maybe even see it for a long time...), since I haven't tagged anyone and posted in an old forum. But I've love to know, even if it's long after now, if something I wrote helps anybody, or if somebody has some good advice for me. I'm grateful for all the help given in here (especially Freddd and others who patiently explain the same concepts over and over again, while still learning on their own), and the good, friendly tone everybody seems to take. :)

    Matt
     
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  10. skboren

    skboren

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    Hi, matt3n, thanks for sharing your thoughts and experience regarding this. I'm so glad you've been able to get improvement by following Freddd's protocol. It could be the case that sunking101 and I are/were experiencing paradoxical folate deficiency. The issue I see with that exolanation, however, is that it does make logical sense to me for there to exist any folate-starved parts of the body when we've increased the overall supply. We are just kind of forced to trust Freddd's hypothesis that such a phenomenon occurs. It seems more likely that the explanation for the increase in symptoms when supplementing folate is something like what Amy Yasko describes, where if there isn't enough BH4, then supplementing folate in high doses (above what the body has BH4 to metabolize) results in the formation of peroxynitrite rather than nitric oxide, thereby increasing inflammation. She explains the precise chemical reactions that take place in this process. And that's why she advocates supplementing low and slow. Ben Lynch explains that increase in symptoms with folate supplementation is maybe due to the folate speeding up one part of the methylation cycle, but then, because the cycle gets stuck due to lack of other necessary components, we get negative reactions from the buildup of folate at a certain point. I think that's sort of how he explained it. So that sounds similar to your second possible exolanation where perhaps we are lacking B12 or potassium. sunking101, did you get to experiment more with the potassium dose? I've still been quite afraid to raise the doses of anything too high. Part of my fear stems from not wanting to be physiologically dependent on super high doses of anything. That seems contrary to restoring normal function. It would be nice if there were a larger group of people ho had tried Freddd's protocol long enough to tell whether they could eventually reduce the doses of the deadlock quartet to amounts closer to what are found in food. I guess I'm reluctant to be a guinea pig. But reading about your experience definitely is encouraging and makes me curious as to what would happen if I tried something similar. I'm still taking small doses of everything. I've noticed a correlation between the venous pooling and dietary errors that increase inflammation (too many carbs, eating sugar, too much omega-6). So it has gotten better for me, though not cured, as I have cleaned up my diet more. And the paresthesia and numbness have largely resolved, now. I don't know how much of that resolution is due to diet, changing dosage of supplements (which I do frequently) or something else. I will say that things got much worse last year before they got better, with muscle twitching, weakness, cramping, spasticity, and pain, but I was also pregnant, so that may have played a role, even though I'd been pregnant twice previously with no such symptoms.

    If you do end up following Freddd's protocol long-term, and get to the point where you can reduce the doses so a certain level, please comment again! I hope you continue to improve with it, that is awesome.
     
  11. Hi skboren - thanks for your reply! Yes, I've been through just about everything you can imagine for the past 10 years or so, except thankfully I don't get migraines or seem to have any allergies, and I have inexplicably good oral health according to my dentist (maybe supplements help since my parents have issues but I've never needed a single filling in my adult teeth).

    I've also tried hundreds of supplements and lots of pharmaceuticals. I've become one of those "shot-gun approach" people, at the moment taking upwards of 150 pills a day and never quite sure what's doing what, except maybe at an intuitive level where I learn over time.

    So you don't think I'm crazy: I started out not even taking over the counter cold or pain pills, and actually believing that drinking a can of caffeinated soda before an exam was cheating. So it was a long evolution. And I might not have started some of the things I feel stuck with today (e.g. antidepressants) if I had known more about nutritional and other natural medicine in the beginning.

    So while I certainly understand the desire to do things as naturally and "low and slow" as possible, as I'm sure you can tell, I'm not the person to give advice on that approach--except that it didn't seem to work for me in particular. One frustrating thing is that we can never be sure if we're giving up too soon -- or if we actually are going too far and possibly damaging ourselves. I feel like we're guinea pigs no matter what we do, since doing nothing is often just as bad as at least getting some hope by trying things that sound promising.

    I do believe we (humans in general, but especially people with these under-studied chronic illnesses) are all different though. Must more than the standard "scientific" approach assumes.

    I remember thinking about it in statistics classes, when they taught us how if any ONE of maybe 10 different assumptions about the underlying study population is incorrect--including the assumption that the population is **homogeneous**, the sample is truly random, and there are no factors outside the study influencing the results of the hypothesis being tested--you simply can't rely on the results. I doubt many medical studies really meet all the tests since we don't have cloned humans to use as test and control subjects ... which probably explains why so many studies seem to contradict each other.

    So I'm quite sure that people can't just copy everything Freddd or someone else did and get the same results ... unfortunately.

    Another problem is that to really follow Freddd's approach correctly, you have to understand the many nuances (I'm always finding something new in the forums) and you have to have an iron will and self-discipline that I personally save my job. I don't believe he strongly advocates "increase everything quickly" over "low and slow" as many seem to believe.

    He's more of an empirical guy: keep detailed track of dosages and symptoms while titrating things up and down and trying different combinations. There may BE no quick fixes, but most people run out of patience if they spend too long feeling worse than before and wondering whether it's progress (healing) or something wrong.

    I certainly don't have a better answer, except that reading others' experiences on the forum and re-reading Freddd's posts (especially the list of symptoms indicating potassium deficiency, folate/B-12 deficiencies, and problems with the wrong kind of B-12) is often invaluable.

    Yes, I certainly only meant for those to be possibilities to consider if you decide to try something radically different. I read a lot on Yasko's website when I started focusing on methylation maybe 3 years ago--and I also followed the fascinating back and forths Rich Van Konynenburg had with Freddd, where Rich also thought Freddd's approach might not be suitable for people without his specific genetic make-up and where Freddd argued that many (but not all) have had success with his generally higher-dose approach somewhat regardless of specific genetic traits and lab values. (I'm sure I'm over-simplifying though...).

    In some ways it seems like a classic case of data-miners vs. theoreticians: the first looks for what works and then tries to explain it. The latter tries to use what's currently known in order to make incremental progress.

    Neither approach is perfect (and nobody does purely one or the other in practice) but the "safe" approach just seems too slow for me. It's like with statistics: if one piece of that complicated methylation cycle chart is missing or misunderstood (e.g. does methylfolate really build up and form peroxynitrite without enough BH4 if it's over-supplemented, and if so do the other supplements or body processes not take care of the excess?), recommendations derived from it might be off-target..[/QUOTE]

    My question is "what if it's not possible to restore normal function?". Certainly that would be ideal, but if I'm sick because of my genetics (or epigenetic changes that can't be reversed) and the real choice is (A) take handfuls of supplements a day in order to feel better and live longer or (B) stay sick but save all that money and trouble -- *my* choice is "A". Of course, that assumes those are the only choices and they may well not be.

    Certainly. Nice to hear that my post was encouraging and that you've improved some by cleaning up your diet (perpetually on my "to do" list as well).

    I've now read and experienced enough to convince me that as long as you have normal kidney function, it's nearly impossible to damage yourself (beyond abdominal discomfort and diarrhea) from supplementing with too much potassium. People get scared because they're sold in 99 mg pills with warnings about taking too much, but that's so the manufacturer won't be liable if someone with poor kidney function takes it. (I would recommend making sure your creatinine is in the normal range before supplementing with high doses - just to save the worry).

    I haven't noticed any dependence - in the sense that if I STOP taking the methylation supplements, within a couple days I don't need to take potassium to avoid tachycardia, constipation (that one is actually welcome for me..) and muscle twitches. On the other hand, if I take ENOUGH, it very reliably stops those deficiency symptoms.

    I also think the need is higher in the beginning (which is now for me due to the glutathione/whey problem). I'm already needing less than the day I took 20 grams, and I expect to get back to what seems to be my baseline on the protocol of about 2 grams per day within a few weeks. Will report if that goes down in the future. By the way, I looked up average total body potassium and it appears to be about 120 grams for a normal adult.

    So perhaps there is peroxynitrate causing some other symptoms interpreted as "healing", but my personal data point is that known potassium deficiency symptoms do respond to enough potassium within hours - and my blood test results after a couple years experimenting with the protocol are pretty good (liver enzymes on low side of normal, red blood cells now a healthy size, kidney function normal, CRP okay).

    Cheers!
     
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  12. skboren

    skboren

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    Well, matt3n, I'm in your same boat. I used to think we should get all our nutrition from food, but six years ago when I got really ill I started in with the shotgun approach, and now take all kinds of things, not always being cautious with the dose. It really can be effective, though, just using trial and error. I've made quite a bit of headway with it. So I would be the last person to consider you crazy.

    You're absolutely right that there is always the possibility that we really just need high doses of things, for whatever reason, in order to maximize function. I guess I like to hope that that's not the case, but hoping doesn't make reality.

    After reading your thoughts on this and your experience, I may up my potassium. Hair tests have shown mine to be abysmally low, and I only supplement 400mg/day. I'm so glad you've made some progress and hope that it continues.
     
  13. LOL, I wrote a long reply and status, then hit the back button and lost everything except the word "benfotiamine" which I had copied and pasted.

    I was getting to: I agree you can sometimes happen on something by trial and error. That "random variable reward" is probably exactly why "PWCs" end up taking (or at least trying) so many supplements and/or meds. It's expensive and inconvenient, but you hope it's good for your health, and once in a while you get an "aha!" moment.

    The status part is that:

    - I haven't died, despite lots more days of needing more than 10 grams of potassium per day (and some hardly needed any extra) --- but I have had a little stomach pain probably from it, mostly when the methylation protocol seems to stop everything up ... including my stomach from emptying. :-Z

    (The, um, back-end of that equation is VERY weird for somebody who had to run to the bathroom multiple times a day for years unless he avoided all food and waited several hours after waking up to be sure it was safe to go out..).

    - I think I'm finally experiencing the "neural brightening" Freddd talks about with methyl-B12! Literally. My computer screen, which I always had on the brightest setting, is now too bright that way and WAY too bright at night. Plus some pains are coming back, which I will choose to interpret as healing, for now...

    - I'm wondering what could be causing my insatiable potassium need -- which is surprisingly "on or off", above my "normal" on the protcocol (of about the maximum daily dose of potassium chloride "extend-tabs" = about 1.8 grams elemental potassium, which I can get from pharmacies without a prescription in Denmark where I am now, back from the U.S.).

    Some possibilities (putting aside the obvious, which is high doses of the Deadlock Quartet supplements):
    • the benfotiamine I forgot was in one of my supplements, since it's related to B1 and too much of "the B's" can cause an insatiable potassium need, according to Freddd and others.
    • ubiquinol, even though I've re-added only one or two (albeit 100 mg) softgels per week. I thought I read a long time ago that CoQ10 gave someone that insatiable potassium need, but now I can't find the post, so I might be confusing what I know is there -- that it can increase blood pressure the first year or so on the protocol -- with what I know I've read about B1, B2, and B3 and potassium.
    So I think I'll cut out the ubiquinol entirely again and cut down the supplement with benfotiamine from 2-4 to 1 x 25 mg per day, which is the lowest I can go without opening the capsules, which I suppose I could try if that isn't enough (or just stop it).

    I have an extra factor that keeps me taking things: the long gaps between visits ("home" to my parents) in the U.S. Supplements are MUCH more limited by law in DK, and ridiculously expensive by comparison, so I stock up on up to 6 months at a time when I'm in the U.S. Once I've bought 6 months of something, it's hard to have to just stop a month in.. And when I'm ordering, I worry about regretting cutting something out and having to wait months to get more.

    But that's a "luxury problem" compared to people who can't afford these things, some of which they might really need..
     
  14. Another update: Freddd's recent experience with copper inspired me to try more of it than is in my multi-.

    Thankfully, unlike him I haven't been taking high-dose zinc - which depletes copper - and I only started trying a little more zinc recently (45-50 mg per day including in my multivitamin). So I didn't have Freddd's scariest symptom: a deterioration of gum tissue despite no infection, so bad that he lost 13 teeth or something before discovering the problem was copper deficiency despite low-normal blood tests. Last I read, he's taking 20 mg copper per day to keep his serum level stable.

    The theory is that the body has been, in a sense, literally starving due to the lack of active B12s, folate, etc. and the need for copper is analogous to the increased need for potassium as the body tries to function in non-starvation mode again. This is known as re-feeding syndrome and was documented after WWII, when former POWs and concentration camp survivors started dying off about the 3rd day after being given normal meals. At the time, they had no idea what was happening but they discovered they could prevent the deaths by only gradually reintroducing food. Thankfully, now we can supplement.

    The worrying part: what might else be missing? Someone suggested phosphorus is even more important than potassium in the documented cases of refeeding syndrome, so I've also started taking more lecithin, which is high in phosphorus, just in case. But I haven't read up on phosphorus much, other than to know that it's pretty common in the diet already.

    Actually, I just had a stellar dentist visit and that almost made me ignore the copper posts - until I noticed Freddd also had a longstanding problem with dry fingertips...which had been plaguing me mysteriously, along with dry eyes and skin around the eyes, for maybe a year.

    Having already tried everything else (including lots of omega 3's and borage oil, high in "good" omega-6), I took some extra copper.

    The eye irritation actually got worse: I woke up the next morning with reddish, moderately scratchy eyes (and I have no allergies than I know of, and the experience with copper has been repeated now).

    Thinking it might be the "paradoxically" induced deficiency again, I finally tried taking a double-dose (4 mg) and within about 15-20 minutes I started feeling almost normal(!!!) for a couple of hours. Now about a week into taking significantly more copper (I'm up to about 10 mg per day), the fingertips are visibly better as well. Eyes are still a work in progress, but no worse than before.

    I've since found that often when I've taken enough potassium and folate, if I still have some symptoms, an extra dose of copper clears them up pretty quickly, including tachycardia (which is the only one that still scares me). So I'm up to 10 mg per day now and considering increasing more because it seems like my body sucks it in and is happy for a few hours, and then I already need more. Apparently, copper deficiencies take a long time to correct.

    I have no particular reason to expect this to happen, but if I'm lucky that will make me need less potassium because the very high K doses can give me some stomach pain. I've also noticed that NADH, TMG and extra adenosylcobalamin all usually make me feel a little better, so that's a data point.
     
  15. Vanessa_M

    Vanessa_M

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    British Columbia
    I've heard that people who are undermethylated should not be consuming more folates - as they tend to strip methyl groups. Just because you've had the MTHFR testing done, does not necessarily mean you don't have a methylation imbalance. There are other testing protocols out there, like the one recommended by Dr. William Walsh, which looks at the by-products of the methylation cycle rather than genes. He argues that the genetic testing is useless. I know folates can cause a number of different problems in undermethylated persons, see the following article and comments section: https://www.samanthagilbert.com/folate-friend-foe/ (and you could always shoot her this question, she usually responds) I might not be a half bad idea to check out some of Walsh's work too.
     

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