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REFEEDING SYNDROME - The clues to healing via induced deficiencies

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Dec 3, 2015.

  1. alicec

    alicec Senior Member

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    I don't really remember but it certainly didn't reduce my need for folate. Later when I was trying increases of various things, I found that massive doses of B2 over several days gave a very favourable response which eventually plateaued.

    I fairly randomly settled on 50 mg riboflavin 3 x daily as a maintenance dose and have continued this for some time. I no longer respond to increased dose but haven't experimented with going lower yet.
     
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  2. Kathevans

    Kathevans Senior Member

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    Alice,

    I appreciate your information on B2. I have to say, I'm impressed by the way you seem to be able to take high doses of just about anything!

    I've been looking over this thread again, as I am just realizing that, like you, one of the things I need to refeed is thiamine. I realized the symptom I'd mentioned earlier here, the weak lower legs, was most likely thiamin. I had a couple of other symptoms. I'll have to look into these two forms. Though, if you have other insights as you are further along in your experimentation, I'd love to hear them.

    I shouldn't have been surprised as my NutrEval Test of last October had four items in the 'High Need' Column: Thiamine-B1, Riboflavin-B2, folic Acid-B9 and Cobalamin-B12. The high need for these vitamins had developed during the period when I was keeping my Bs low--to the 10-12mg/day range, and while I'd stopped both B12 and folate as per Greg, as he coached me through my nonexistent molybdenum levels. Catch me doing that again!

    As I was engaged in refeeding the B2, folate the B-12, I did try adding thiamine one day at 25 mg, had instant a-fib, and backed off. I was probably still low on B12 at the time, as well. In any case, today when I took the same dose, I had no reaction though I did take a beta blocker just in case. Tomorrow I'll do it without. Once the thiamine dose was used up today, my body protested its desire for more by promptly moving into continuous IBS mode, which had largely stopped with the Ado B12. So, as you say, it's a clear case of refeeding.

    As to kinds of B1 or amounts, I have no idea. I will look into the two types you mention, and am curious as to the amounts you are taking.

    I admit to being nervous about potassium demands as I have only recently, with the addition of high daily doses of Ado B12, driven up my daily K+ levels to just under 3,000mg. You said in your post that you are beyond the high potassium requirements and I wondered if that alone might make things different for you. Is there any evidence of a return of that need, given the new item you're refeeding? I believe another thread points out that it may be the high potassium levels that use up the B1. I may be revealing my ignorance here, which wouldn't be surprising given I have no training in the sciences. This alone is a struggle for me to wrap my head around.

    On another thread I was also interested to see the relationship between the need for B1 and low phosphorus, which I believe I have. Kefir, someone said, or yogurt. I'm heading to the grocery store tomorrow.
     
    Last edited: Jun 14, 2017
  3. alicec

    alicec Senior Member

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    I have continued taking 50 mg alithiamine and experimented with additional benfotiamine. I lost track of how much of the latter I added in the first week. The beneficial effect I felt petered out after a short time so I just kept adding more till it stabilised.

    Now I've been trying to work out a consistent, high dose that I will stick to for several months, then I will probably reduce a bit. I don't know what this is yet but probably around 1000 mg.

    I haven't noticed any change in potassium demand.
     
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  4. Athene*

    Athene* Senior Member

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    Hi @Kathevans Hope you're doing okay. Your poor sister too. I've been away in a seaside village with no internet (bliss).

    I found I needed injections of Meb12, the oil just didn't do it for me, even at 3 sprays daily of the combined oil. I had methyl trap symptoms when using the oil with my 30mg Methylfolate, and when I went back to high dose injections it all resolved very quickly.

    I need lots of potassium too with lots of vit C - you know my usual doses & all the minerals. Plenty of zinc & magnesium. Adensosylcobalamin once daily, 8mg sublingual. Low dose b complex, much less b2 than I used to take, LCF, sunflower lecithin, everything Fredd mentioned really. I'm also on thyroid replacement since around 2001.

    I don't worry about mercury toxicity. I haven't read all the replies here. I know some folk are very worried about it. I find I do best with @Freddd protocol and I'm very glad and lucky I found him here about two years ago, by chance. (Thank you @Freddd ). But I've gone down the wrong road a couple of times. Hopefully back on the right track now.

    Greg's advice hasn't worked for me I'm sorry to say. I believe the oils really do help those who have a short lived deficiency or some functional deficiency, and not those with decades of undiagnosed pernicious anaemia or other genetic issues with converting folate & B12 which leaves folk permanently bedridden, like I was in the end.

    Using the oils without injections set me back big time. I know it helps some, but I need a hell of a lot more B12. Perhaps the oil doesn't increase the serum level enough in my case. I don't know. I'm just observing my own situation. It was the inconvenience and difficulty (ongoing) getting hold of MeB12 injectable that made me try the oils.

    One thing I'm finding very difficult to increase is LCF - still on 1/3 of 855mg capsule (I just edited that!) daily for 2 years now. Whenever I try to increase it, I get massive folate & potassium deficiency symptoms. So that's a work in progress...I'm getting stronger but still crash when I do too much (like walking for 3 hours in one go - made me crash for 2 weeks). I'm up and going again, though not sleeping well, and intend to pace myself much more carefully and not take such a silly risk again...

    TMG gave me dreadful stomach ache. D-Ribose gave me awful gut problems. I drink Kefir now (both water and milk types) and my gut is settling well with those probiotics. SAM-e made me crash again (last year).

    Everything else on the protocol is fine, though lots of things made the potassium need increase. I'm fed up to the back teeth swallowing potassium, as I'm sure others are, but it's a necessity for a while yet. I see it as a good sign that lots of repair is happening. One of my disastrous wrong turns was taking lots of potassium powder which is not certified gluten-free. And a potassium pill brand that has since decided it's not gluten-free even though it used to state 'gluten-free' and the ingredients haven't changed. I only noticed when it was too late. And they've most likely always had hidden gluten. Anyhow my coeliac antibodies increased hugely and doubtless my villous atrophy happened again, having built it all up for years.

    I also seem to have a grumbling gall bladder and need to check that out at some stage. It's like some absurdist novel at this stage. Once I begin to solve the puzzle, it becomes ludicrously complex again. Problem is I can't bear doctors after all the incompetence they displayed over the decades. I wish I could fix my own gallbladder but it may be too late, not sure what to do about it really.

    I found I was very low in D (it suddenly dropped when I got on all the other minerals, though it had previously been high, with zero sunshine - not sure why, but I don't care, as long as it comes up again, which it seems to be doing - we finally got some sunshine here.

    Best of luck and keep going.

    P.S. I just glanced at the thread again and saw 'thiamine' somewhere. Do be careful. It can drastically lower your potassium. You seem to need lots of potassium now, like many of us do. I think you told me that before as far as I remember?
     
    Last edited: Jul 8, 2017
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  5. Eastman

    Eastman Senior Member

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    Just in case this article by Dr Derrick Lonsdale is useful to anyone here.

    Are High Folate and Vitamin B12 Linked to Low Thiamine in Autism and Other Disorders?

    Excerpt:
     
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  6. Gondwanaland

    Gondwanaland Senior Member

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  7. Athene*

    Athene* Senior Member

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    PPS I've just read a thread re Fredd advising to take Adenosylcbl once weekly, that when taken daily it may block Meb12. I'm going to try that. I never did well on Greg's mixed Meb12/Ado oil either - wonder if that's why?
     
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  8. Kathevans

    Kathevans Senior Member

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    Yes, I remember this, that they 'compete,' I think Fred said. I've been using two splurps of Oil, one combo and one plain Methyl and have just been trying to decide exactly what 3-pack to order from Greg this next time. I don't have anemia, you may recall, only all those MTR and MTRR homozygous snps I ought to try the Adenosyl, once weekly, or at least less than daily. But initially as I've titrated up, it has felt as if it was exactly what my body wanted, that in order to go back to sleep (oh yes! sleep!) I needed to have the Adenosyl in me. It may be that I've been filling up the tanks, but things do change over time.

    After being on fairly high folate for a while--20mg+/day, I began to have what seemed to be definite symptoms of thiamine deficiency--very clear weakness in my lower legs in particular--and as some of the posts above suggest, I realized that folate and thiamine can compete for transport into cells (or something like that), and I am homozygeous for the SLC19A gene (Folate metabolism AND folate/thiamine transporter family: https://www.ncbi.nlm.nih.gov/pubmed/14770311

    AND: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831518/). Over the past few weeks I've lowered my folate (strangely without making symptoms worse) and increased my thiamine intake. This is still a work in progress as thiamine can also cause a-fib, which I am prone to. I did speculate with my alterna-doc whether this sensitivity meant that I just needed more thiamine and I have worked with it a bit. I also wonder weather as @alicec noted, that I might react differently to another kind of thiamine but haven't experimented with this yet.

    I am currently letting my body find it's own level--whatever that means! Trying to be patient, I guess, and not push too hard too fast.

    I also found in my reading that thiamine had something to do with gall bladder--so you might look into that. I, too, have lowered my B2 to something around 35-45mg, partially dependent on how much of my B-complex I take: currently 1/2 of a B-Minus daily in 2 quarter doses. And over the past couple of months have added Betaine HCL in a low dose and digestive enzymes with each meal. Potassium can be a mystery to me. Because of the dangers surrounding its supplementation, and the way my heart responds instantly if it is low I may go overboard with it at times. I seem to need at least 1500mg. and have taken up to 3,000mg. But we'll see what lowering the folate does to my system.

    Life without internet...the mind boggles! But the sea, the sea! Such a place of restoration, I'm sure it did you a world of good. I have an old friend who says, "Sometimes a change is as good as a rest." And in a pinch that seems to be true! I've made it to Cape Cod once this summer and hope to do that at least once more.
     
  9. Athene*

    Athene* Senior Member

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    Thanks @Kathevans I did try the thiamin and it caused a dreadful potassium deficiency though it made me feel great for a few days (then awful crash). Same happened with biotin. I regretted not sticking to the Freddd protocol. I was just impatient to get moving. Now I'm sticking to it and I'm getting better. But everybody is different.

    I essentially have the same issue as Fredd - low b12 and folate for decades due to a combination of genetic polymorphisms & undiagnosed pernicious anaemia (undiagnosed because the b12 serum was high, MCV >100 was ignored, all symptoms were attributed to 'ME' or 'Fibromyalgia').

    Kath, I get the weak legs you mention when I'm low on potassium. I feel very ropey indeed when potassium goes low (weak legs, weak arms, dreadful fatigue, diarrhoea, extreme irritability, later heart jumping & knife-like muscle pain. Potassium will go low when we take in high doses of b12 & folate. Happily my potassium is settling at last and I've dropped 1000mg over the past 2 weeks and am doing well...
     
  10. Eastman

    Eastman Senior Member

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    How confident are you that the thiamine deficiency symptoms came from folate and not B12 supplementation?

    The studies you linked to show that the folate and thiamine transporters, while belonging to the same family, are different and don't suggest competition for uptake.

    dannybex did start a thread suggesting that folate may be inhibiting thiamine but later realised that there had been a misinterpretation of the original study.

    Freddd did say that thiamine supplementation increased potassium needs, which suggests to me that the thiamine is being used up and increasing refeeding syndrome.

    Edit: I guess what I wanted to say with the last few paragraphs is that while folate may not be directly inhibiting thiamine, thiamine deficiency does seem to be a real risk from the methylation protocol.
     
    Last edited: Jul 8, 2017
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  11. Kathevans

    Kathevans Senior Member

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    Oh my. I'm having doubts and questions about many things. Greg of B12 OIls says that different cells in the body seem to prefer different cobalamins--most of the storage in the liver, he says is Adenosyl B12, while most in the Adrenals is Methyl, and most in the prefrontal,lobe(I think it was) of the brain also Methyl. Of course, there are Fred's theories about Adenosyl hanging around longer. My MCV has been more or less mid range--91.2 in a range of 80-100, and my B12 levels also normal, though I definitely benefit from the supplementation.

    My first symptom of low potassium is heart irregularities, and when it is an issue ( which is to say, my heart not going off because of other deficiencies) then sipping that dose will settle it down almost instantly, and certainly within five minutes. I think I mentioned that it currently seems that no matter how much I take during the day, I can still need doses in the night. I keep thinking I can load up in the daylight hours, but it doesn't seem to work this way. But my needs are still fairly high--2000 or so a day.

    Currently, though, I entered a phase I hadn't been in for years when my heart was going into atrial fibrillation. This occurs mostly at night and is largely positional, which has meant trying to sleep sitting up...which hardly works till I'm completely exhausted.

    In any case, a trip to see my alternative doc and he pointed out that the zinc to copper ratio had something to do with a-fib, not to mention my wobbly, weak legs. So many of these deficiencies have the same symptoms! Sleep issues certainly rear their head with all,sorts of deficiencies; and now the weak lower legs; and likewise the IBS. I had tried to keep my zinc to what I thought were mid-range levels of about 22mg of supplementation per day, but even as I begin to ramp up on copper--only .5 mg so far, the fibrillation has already greatly reduced, so it seems there is a connection.

    Fortunately, I have an annual physical coming up where I can be checked once again in whatever ways seem iffy.

    @Eastman Indeed. When I see actual results directly as I do with potassium, or currently with the copper, then I feel confident. Otherwise, I try to remain open about cause and effect. And as you conclude, the methylation protocol seems to put us at risk for all sorts of deficiencies. I guess the only way to handle this is with fairly frequent analysis with reliable tests like the NutrEval, which I will redo in about 6 weeks.

    I will say, the high doses have scared me off, particularly the folate. Gone are my frontal headaches, and my runny nose. And on the B12 front, a single squirt of the Adenosyl/ Methyl Oil seems to suffice, though I will experiment with the Methyl alone...
     
    Last edited: Jul 13, 2017
  12. Kathevans

    Kathevans Senior Member

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    I've been in a very rough place over the past few weeks. Primarily heart irregularities, sleeplessness and exhaustion. Often I find it hard to see clearly what's going on until I get a bit of perspective, and over the past couple of days I've gotten a bit more of that, perusing my daily supps over the past few months.

    In fact, it isn't only the copper that I'd stopped that has possibly been playing havoc with my symptoms. I also pulled back on the folate--I have to say, under the tutelage of Dr. Greg of the B12 Oils company. Oh, @Athene*, your experience speaks to me. But there are some who, having gotten the B2 cycling, found that much lower doses of folate worked for them.

    I was feeling as if this, the B2, was working, and as I titrated up the folate, I seemed not only to never find a place to stop, I felt uncomfortable, wired and not sleeping. I can see, of course that it might have been the copper...which I'm still titrating back up to about 2 mg per day--to have a reasonable ratio withy my 25mg of zinc. So, I went from about 20 mg per day down to 800mcg, and for a couple of weeks I seemed to be ok...with only occasional heart irregularities.

    Last week the copper resolved the heart issues (and the sleep as well) for a few days as I began to take it again, but then they reasserted themselves, along with a breathlessness and exhaustion, and I was left to stare at the chart again. Once It hit me that the low folate could be the problem, I began to refeed it. And again, this definitely helped for a day or two...with seemingly diminishing returns as I push to continue. That is, I had almost constant flutters and palpitations last night even as I was up drinking potassium and taking 800 mg of folate several times. Granted, I'm only back up to 5 or 6 mg of folate over the last day, nowhere near where I had been. And perhaps my body's 'memory' of the higher doses is holding out for more.

    Maybe I just need to get my levels higher again and in a day or two things will settle down. I do feel a bit foolish, or maybe just embarassed that somehow I let this happen to me, but I guess I never would have understood how important the folate is for me without this experimentation.

    For now I am thinking of @Freddd's advice to someone earlier where he suggests when your in hell, it's no time to go slow.

    I do feel I've pushed my body into more extreme deficiencies with methylation, and this may simply be one to keep front and center.

    If any of you have similar experiences from ramping up and down, I'd love to learn from them...
     
  13. pamojja

    pamojja Senior Member

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    Why you think this is a proper ratio?

    I'm asking because I've been deficient in zinc (serum, whole blood and HTMA) while sufficient in copper. Titrated up to 60 mg/d of zinc, which gave me headaches, easily eased with 2 mg/d of copper. However, that already was to much in my case, and copper fast shooted up above range. I seem to be fine with 1 mg/d of copper though. One reason might be that we get much more copper from diet than expected. Still, in total got a 10 to 1 ratio of zinc to copper from diet and supplements together during almost 9 years. Zinc still hovers at the lowest end of normal.
     
  14. Kathevans

    Kathevans Senior Member

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    Only that my alternative doctor, as well as online sources say that 8:1 or 10:1 are good ratios. I do try to look at testing to confirm what I think, though I only do the NutrEval Test every year or so and things can go out of wack in that time if we're using high doses of supplements. My zinc on my last NutrEval in October 2016 was normal (they don't give you a number), and recommended only 10mg, so perhaps I'm taking too much! My mainstream doctor tested my copper in 2015 and it was mid-range: Normal@ 1.1 ug/mL (range of .75-1.45); my zinc at the time was .78 in a range .66-1.10.

    Back then, though, I was eating a lot of nuts which I've since stopped so much because of oxylate issues. Thus supplementation seemed the smart thing to do.

    All we can do is try to stay on top of these things. When left on my own, I flounder, as you see. Stopping the copper may not have been the best decision, but it seems that folate played a role, too.
     
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  15. Eastman

    Eastman Senior Member

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    @Kathevans

    Have you addressed your thiamine concerns? Your latest symptoms (heart irregularities, sleeplessness, exhaustion and breathlessness) have sometimes been attributed to thiamine deficiency.
     
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  16. Kathevans

    Kathevans Senior Member

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    @Eastman I've been trying to look at my symptoms through the lense of refeeding syndrome and didn't have them resolve with thiamine supplementation. Not that this might not be a contributing element.

    However, with each of three supplements I've had what @Freddd describes as the very clear response that gives some degree of certainty that what you're refeeding is just what your body needs.

    This has occurred with copper first, then with an increase of folate, and finally with an increase of Adenosyl B12. I had pulled back on many supps, unsure of where I was and what my body actually needed. As I retitrated copper, my IBS disappeared, heart settled, and I slept like a log.. For me, anyway. For a couple of days, Then the symptoms reappeared. The second time Folate was what my body needed and I titrated back up to 12,000-13,000 mcg/day with the same cessation of symptoms. The folate has felt a little less stable, as at this dose I have begun to feel a bit over-wrought and hyper as each dose of 3200 goes into my body. I'm not sure if it may not be more than I need. In any case, as I was ramping up with the folate, symptoms returned and it was the Adenosyl B12 which settled things down--really within hours. I had pulled back on my daily use thinking to try the once/week dose that so many do well on. But it appears I am one of those who need it daily. I had been using the B12 Adenosyl/ Methyl mix, And I had pulled back to the plain Methyl. Returning to the combo had carried me through one peaceful night and now I'm back at go again.

    I had more IBS symptoms during the evening..not always a bad omen, but as I climbed into bed and my heart began to flutter, I feared it might be a tough night. In fairly short order I've tried extra folate, extra Adenosyl B12 ( Seeking Health's 3,000mcg tab), and an extra two drops of copper (the most I've added in a daily titration, it's BodyBio's drops where 4 drops = .5mg). None of it seems to be working the magic. Though I might try a portion of an Adenosyl/Methyl Oil spray.

    A worrisome thought entered my mind: is it possible that my symptoms need a supplement that I haven't even tried yet, like the L- Carnitine Fumarate which is on my supplement shelf and that I hadn't yet gotten around to? Or perhaps Sam-e, which I don't even own?

    I feel like a fool to be in such a vulnerable place, but honestly, when I pulled back there were no instant alarms. And I pulled back on different things at different times. The copper several months ago over mercury concerns when I was having dental work done, the folate only six weeks ago.

    I'm not sure here's much research on all this, right? We're IT as we go along. I keep drinking potassium to make sure I'm not slipping up there. But otherwise, there's nothing for it but experimentation.

    It's a very lonely, uncomfortable, and let me say it, scary place to be. Too many balls in the air to be juggling.
     
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  17. Eastman

    Eastman Senior Member

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    @Kathevans

    Maybe you need even more thiamine? alicec reported taking huge amounts of benfotiamine to overcome what she suspected to be a folate/B12-induced increased need for thiamine.

    But you're right. There's very little research on this and it is scary to experiment with such high amounts of supplements on yourself. I guess that's why sharing experiences on this forum is helpful.
     
  18. Kathevans

    Kathevans Senior Member

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    Thanks @Eastman. I feel it's important to share, even our hardest experiences, and this is certainly it for me. I have just been getting on my feet today, spent much of the morning in bed, part of the time with my heart fluttering. But I did stop having the pounding palpitations at about 5:30 this morning and gradually fell asleep for an hour and a half. This occurred after going back and forth with the three supps I mentioned above, and within a half-hour of using a second half of an Adenosyl/Methyol spray of the Oils (I scrape some off with a credit card!). Whether this was it, I'm not certain. But I do know that Greg of the Oils says that the body wants consistency, and I admittedly haven't done that. On a closer examination of my Excell chart this morning, I see that I began using two splurps a day of the oil occasionally on April 21st, this became daily by May 16th. By June 15th I stopped using it twice a day; and as I said above, last week I was experimenting reaching for the once weekly that @Freddd suggests.

    Obviously, however, this isn't the approach for me. So, I'm now back to twice daily sprays. That's fine. We'll see how tonight goes.

    Meanwhile, I've nudged my copper up a bit, held my folate relatively stable, and have added manganese drops--just 2 to begin--very low.

    As to the Thiamine, I did go to the doctors yesterday and she did some of the reflex tests, which if we are thiamine deficient apparently grow weaker or disappear, so that may not be the problem. For now, I'm taking the 10mg/day in my B-Complex. I had read of @alicec 's good experience with high doses. We get our ideas from everywhere, of course. And sometimes that's part of the problem here. There are so many good minds working so hard to figure things out. We can only share what we know, listen to what others have found to be true for themselves, do our own experimenting and take it from there.

    And so it goes.

    Now, I'm looking for a good multi-vitamin so I'm not taking all these drops. While I've never tested deficient on other things on either the OAT or NutrEval Tests (and I'm going to re-do the latter in a month or so if I can stabilize a bit) I realize I may be pushing myself into other deficiencies. And, I'd like to avoid that if I can.

    Any suggestions? I see that Seeking Health has one and I like their products. Life Extension, too, though some people comment that it has driven their vanadium too high. I've never taken that! My father was a metalurgist who worked with specialty metals that gave new qualities and strengths to other metals. His primary elements were molybdenum, titanium and vanadium. I always thought it would be ironic if I really needed molybdenum and lo and behold, I found myself extremely deficient and titrating up last summer. You need it for B2 to function properly, you know. I still take about 225mcg/day. Do we ever take titanium?! Use it for anything other than tooth implants--of which I have one.

    Minerals!
     
  19. Eastman

    Eastman Senior Member

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    I don't use a multi-vitamin. They generally don't provide the vitamins in the ratios I like.

    The multi-vitamin that comes closest to my prefered ratios is Life Extension's Two-per-day, but I avoid that because of the alpha lipoic acid, which mobilizes toxins and sometimes messes people up.
     
  20. garyfritz

    garyfritz Senior Member

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    Yes, that was the multi that flared my mercury (I think) symptoms. Enough people have significant amounts of mercury in their bodies that I think it's not a good idea to take ALA once or twice a day.
     

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