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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. Freddd

    Freddd Senior Member

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    @SJB944 ,

    The carnitine is typical, it is only noticeable with a big reaction when it is deficient, and turns on damaged neurons or something of the sort for some parts of that. Jarrow has a freebase capsule of LCAR now. I'm going to try it to see if it is different for me. I'll only be able to tell if it works differently better.

    It sounds good on the multi EXCEPT it won't be enough of the item in actual deficiency, especially copper perhaps as that is very slow. Mine dropped 5 points on 15mg daily, I've been taking a multi mineral with copper and all the rest for two decades. But you are right when it comes to "feels like something missing". I had that too. That's what got us to try that destructive glutathione trial, something was missing. ANd I'm prettyt sure it was actually copper. The liver contains half the body's cobalamin, AdoCbl making ATP for all those enzymes. I suspect that maybe one of the livers's cofactors, especially if you have elevated liver enzymes, would be missing. Look at the minerals found in the liver perhaps as a clue.

    "It seems like the DQ covers a multitude of sins..."

    It covers all methylation pathways for instance. Each trace mineral makes it's enzymes that act on only a small part of the methlation tree, with all the trace minerals that make the enzymes breaks up into a bunch of different endpoints on the apparently same level, on the leaf level you might say, and their own trees have some overlap with other trace minerals, so some things need copper and manganese, boron and copper, etc.
     
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  2. Deltrus

    Deltrus Senior Member

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    Anyone know if there is a "refeeding syndrome" level in which you are mostly feeling fine, except

    - Select muscles and joints feel like they need to be stretched heavily.

    - Some nerves feel kind of "hot" but not painful. It is like a mixture between slightly painful heat and itchyness.

    I am guessing the problem is magnesium, b6/p5p, or potassium. Or a mixture of those 3.

    Or the problem is inflammatory in nature rather than a deficiency.

    EDIT: Turns out I needed a mixture of minerals (mag, potassium, zinc) and b12. The symptoms weren't high because I only needed a bit of everything. Also Vit D seems to be needed during refeeding syndrome(or heavy supplementation), it immediately made my vision a bit clearer.
     
    Last edited: Apr 21, 2016
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  3. MacGyver

    MacGyver

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    To me it's now apparent that trace minerals are very, VERY important and deficiencies in those might actually be the root cause of a lot of people's health issues. That's a bold statement to make or rather hypothesis to propose but all the pointers are there. And it just seems fitting for us to ignore the little guys as bigger is always better right? :)
    Besides, the amounts required of each of those trace minerals are a LOT higher than what is currently recommended or even their ULs, in my own experience.

    I'm going to start a separate thread to detail my own experiences with magnesium, boron and manganese after I get some more experience with my current situation but I've been able to completely eliminate my painkiller with those two (and their cofactors).
    And they fully match the refeeding syndrome in how they interact with eachother.
     
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  4. Johnmac

    Johnmac Senior Member

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    @Freddd, FYI I've given myself an acute copper deficiency on 50-150 mg of zinc over a nine-month period. I'm pretty sure it was the zinc rather than the methylation supps.

    I'm taking the Solgar, same as you. 12.5mg/day seemed to work. Now I'm crushing up about 3 pills a day (total 7.5mg) & putting them in patches - transdermal. No idea of dosage (in terms of penetration), but still appears to be working (-Cu symptoms receding).

    Given the -Cu symptoms are slow to recede, how did you titrate the dose by symptoms?

    My symptoms seem different to yours, tho they match the official lists I've read pretty well: raging skin infections (from neutropenia), irritability, worse psoriasis, anemia (presumably because -Cu inhibits iron synthesis).

    I'm not taking any zinc at all now - too scared. Would you disagree with this?

    Thanks!
     
    Last edited: May 2, 2016
  5. Johnmac

    Johnmac Senior Member

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    Yes, I have experienced acute infections whilst on the Freddd Protocol - but not because of the Freddd Protocol. Mine (boils, flu, finger staph infections, large cold sore) were all, I believe, a result of neutropenia stemming from copper deficiency, stemming from many months of high zinc supplementation.
     
  6. smileygirl

    smileygirl

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    lentils are supposed to be a good source of phosphorus and copper
     
  7. Msinnott

    Msinnott

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    I been dealing with refeeding syndrome since may 2015 when I had parathyroid surgery to remove to hyper glands which caused high calcium. I have had to be on large doses of magnesium And calcium the first year my phosphorus stayed between 2.3-2.5 (2.5-4.7) calcium 8.4-8.7 (8.5-10.1) just started thinking the last month I was also getting symptoms of low copper. So started taking that And the refeeding as comensed again. Sometimes it feels like it will never end. Will be so glad when my Skelton is done rebuilding.
     
  8. Freddd

    Freddd Senior Member

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    Hi John,

    Low boron can lead to uncontrollable tooth decay especially when combined with the dry mouth and poor circulation with the low copper. I'm up to 30mg of copper per day at this time and my serum copper id going up slowly. The only thing not recovering well is the neurological damage from the low copper. I got my first haircut in several years as my hair is no longer thin and brittle. I also have some restored color in my hair. I dropped back to 36 mg of zinc but I ended up having worse problems in increaed it to 65 mg again and am healing better. Good luck
     
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  9. Johnmac

    Johnmac Senior Member

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    Thanks @Freddd, & nice to hear from you as ever. I'm glad you're getting over your -Cu nightmare.

    I'm fairly sure my skin problems were mostly leishmaniasis (a skin infection I got in Cambodia: no-one's ever heard of it). I never got tooth decay (apart from the SL B12), tho I could 'taste' little mouth infections often enough.

    I might have got copper deficiency a few months earlier (tho my bloods were normal - but after supplementation had begun). I got pitted nails & some fairly weird psychological symptoms.

    BTW I can highly recommend the B12 transdermal oils, which appear to deliver a lot more B12 to my system a lot more slowly than the SL. I think transdermal makes it way through the lymph in a 6-8-hour process.

    All the best.



     
  10. Freddd

    Freddd Senior Member

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    Hi John,

    Ok, so let me tell you what I have seen. You are the 3rd including me. There are two things happening. First when the copper stuff starts the serum level plunges. It took about 6 months of 30 mg/day after 5-6 months of 5 to 25 mg. and my serum level was still below where it started and healing had progressed but now I am looking for what the next induced deficiency might be. What does the pitted nails. Maybe mine are not the same, it's more like a jot of bristle brush impressions on soft paint on 2 or 3 fingernails. I haven't looked at my feet. The psychological symptoms sound like the lower copper. It can get strange. Low copper can cause "sub acute combined degeneration type of neurological damage" Yep. I had SACD from methylation flaws And one of the typical damages is in the upper motor neurons that leave one with tired feeling muscles in the legs. I had sleep disorders and depression and feeling lousy and they were affected clearly within a day each time I went up except to 30mg. Then the level started going up. Or, just came to me while writing this, copper deficiency makes for very weak and brittle hair. I just got my first haircut in 3 years and some color restored. Suppose, what is happening is the fibers running from bottom to top, like hairs embedded in the nails, is weak and flaking out leaving empty hair tracks from completely gone to about half way worn through to none at all.. That would account for the shape and variations of of what is exposed. Like hairs the nail material got brittle and flaked.
     
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  11. Johnmac

    Johnmac Senior Member

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    Thanks Freddd - yes those nail symptoms would exactly describe mine. I never had the hair symptom, but the psychological space was one of the strangest & least pleasant to date.

    I only needed a smaller dose of Cu, tho I have made sure to keep it up, as I take zinc daily for "pyroluria".

    I'm still going strong on B12, 2 or 3 years on. But some things weren't reached by it, so I'm presently exploring the lectin avoidance diet - another near-"unified field theory" of healing - with very good results so far for my remaining pathologies.
     
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  12. Jigsaw

    Jigsaw Senior Member

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    Thanks for that, @alicec

    I've been taking 9mg boron/d for the last two years. I've never thougt of it as helping to lift brain fog, only in the context of improving bone and joint health (it carries the instruction for the body to repair damage to joints etc).
    I'll give this higher dose a go. Interesting that you seem to have repleted quite fast at this dose.
     
  13. Kathevans

    Kathevans Senior Member

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    @ Freddd and others with more experience. @Johnmac @Athene* @alicec @CCC @ahmo

    I’ve been working on the DLQ for a couple of years now, on and off on the first three ( I haven’t tried L-Carnitine yet), as I titrated up on some cofactors that may have been causing partial methylation blocks. Things got worse about that time and I’m grateful I found this site.

    I came to this with some things on board: 400-500 mg magnesium, 200mcg of iodine, and have since added 230mcg selenium, 150mcg molybdenum. I have stayed away from copper and manganese because my levels seem to be ok (for the moment) and because of possible mercury toxicity, I want to be cautious about adding them.

    I’ve worked my way up on Methyl-B12, and very slowly added Folate and Adenosyl B-12 since last December. Prior to this time I couldn’t seem to tolerate above 2,000mcg of Folate and very little Adenosyl B12. With the stabilization of the above cofactors, and possibly a restoration of my B2 levels (I took upwards of 125mg/day for a while last fall, but have settled back down to 30mg/day relatively recently), I was suddenly able to tolerate higher levels of Folate. In fact, with each addition of Adenosyl B-12, it seemed my body wanted, even insisted on more Folate.

    In this way, seemingly responding to my body’s requests, I worked up to 20,000-25,000 Folate, touched momentarily on 28,000 and felt weird—still head and ear tingling/face tightening, and possibly as if there was no end to the climb. My Adenosyl B-12 had reached 3 SQUIRTS of the Adenosyl/Methyl B-12 Oils, which, according to Greg Russell-Jones is roughly 1.8 mg ado, 0.7 mg meB12 in the combined product, with roughly 80% absorbed. That amounts to roughly 4.32mg Adenosyl B12 absorbed/day, and about 1.68mg Methyl B-12.

    Four days ago, facing this precipitous climb and still lots of symptoms, I cut my B-complex levels to half what they’d been after deciding, as per Fred, that too high level of these Bs could cause higher demands on both Folate and potassium. Within the proverbial three days, my potassium needs spiked from about 1800mg to 2400mg+/day. Turning again to this thread, I see that Adenosyl B-12 can also drive Folate and potassium levels and so I stopped it for a day, saw my potassium needs drop, yet by this morning, after about 5 hours of sleep—up once or twice for bathroom trips—but still a good stretch for me, I found I couldn’t go back to sleep without taking 1 sublingual Adenosyl B12, Seeking Health’s 3,000 mcg supplement. Within fifteen minutes I fell deeply asleep for the next two hours.

    But when I got up I felt weak and shaky, particularly in my lower legs, and unsteady. This is a symptom I've noticed a bit over the last month or so, but until I cut the Adenosyl B12 and Folate, I hadn't noticed it much. Today, I had thought to use only the Methyl Oil with roughly .7mg of B-12 3x today, but by 1:00 I’d decided to use a single Adenosyl/Methyl Squirt. I felt better, though not completely, shortly after and for most of the afternoon. But after dinner, I felt that weak, unsteadiness in my legs once again. I feel as if I'm seeing classic 're-feeding', symptoms growing worse with the elimination of a needed supplement.

    Thoughts?

    Do I need to hang in and adjust to lower levels of Adenosyl B-12? Earlier in the thread there is mention that Adenosyl can disrupt the utlization of Methyl in the body. Is it possible that's what's going on?

    What about L-Carnitine? I’ve never added it to the mix. Greg Russel-Jones says that if you get enough of the B-12's on board and functioning B2, that your body will make Carnitine. I believe you, @Johnmac were able to stop L-Carnitine after going on the oils. A while ago—over a year and a half—the only OAT Test I’ve had showed a high need for this, but more recently last October, I had a second NutrEval Test which doesn’t seem to have a direct marker for Carnitine, though I had a ‘High Need’ for Methylation, for Folic Acid, for Cobalamin B12, for B2 (which I did respond to with high doses) and B1, Thiamin.

    How did you know when you’d had enough Adenosyl B-12? The IBS that it caused seemed to call for more and more, but now I’m confused.

    I may be re-feeding more than one thing here, and may need to re-feed still more.
     
  14. Johnmac

    Johnmac Senior Member

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    Hi Kath,

    I'm impressed that you've put so much effort into understanding all this. Personally I just don't have the head for it - it was too complex - & had to just follow what others said, & what worked.

    Yep, I switched to the oils (plus Se & Mo & I & Mg & above all B2) at the beginning of last year, dispensing with the potassium & m-folate (tho I eat greens) & carnitine. I stopped having a rollercoaster ride at that point, & my energy gradually came back. I reckon I'm 85% recovered from my fatigue. When my lifestyle is perfect (no travel, no stress, lots of exercise) it's probably 100%.

    So I'm not there yet, but I'm much better than I was. How does it all work? No idea. I know less than I did 2 years ago. I just do what Greg says; plus if something else works I add it in. For example I noticed (after getting inspired by @Sherpa ) that SelfHacked's approach worked well, so did as many of his recommendations as I could. He uses supplements, but he also works hard on lifestyle stuff. I found the lifestyle stuff very useful - sleep, circadian rhythm, walking, sprints, chi gung, yoga, low-carb, more human company. All seem to be pretty energising for me. I had another crash mid-last year from stressful events (travel & a ghastly Asian skin parasite I picked up), & the SelfHacked approaches pulled me out of that.

    So far as I can work out, the B12 et al fixed that deficiency, & the SelfHacked lifestyle stuff built on that. As to the exact mechanisms at play - I don't know.

    Lately I added resveratrol & pregnenolone, each of which gave me a distinct lift.

    Nice to hear from you again.
     
    Last edited: Jun 5, 2017
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  15. alicec

    alicec Senior Member

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    It sounds like for you, now is not the time to cut back - you may still be replenishing huge deficits and need more of several things for a lot longer.

    Greg's ideas might apply well to people who have simply been deficient in B12 for some time but I don't think he appreciates that this disease can stuff up many aspects of metabolism with many individual variations. For us there is no one size fits all.

    I haven't found that Freddd's idea that high levels of B vitamins increase the need for folate is applicable to me - quite the contrary. At one point I had a seemingly bottomless well of B2 and biotin to fill. After huge doses for several months I was able to cut back but still need fairly high amounts (as well as moderately high amounts of B5 and B6).

    At some point I seem to have depleted B1. Currently I am sucking it up at an astounding rate so plan on continuing very high doses for several months.

    With time my need for folate has moderated but it is still highish and Greg's strategies simply make no difference to this in the long run. I just keep taking the folate because I feel so much better with it.

    The only thing that has really diminished is the need for potassium. I no longer need to supplement it.

    As far as carnitine is concerned, the only way you will know if you need more than you can make is to try supplementing it and see what happens.
     
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  16. Freddd

    Freddd Senior Member

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    Hi Kathievans,

    My suggestions is to stop trying to so hard. In my experience, one 10 mg sublingual tablet held for an hour and it tops off and stops increasing and levels out in a couple days of doing that, I find once each week or two. Then one might start the L-carnitine at a tiny amount becasue it could hit like a ton of bricks and again, it is to reach an equilibrium, not big swings which can get dangerous with the AdoCbl-carnitine part of the energy.games with your mitochondria. You can't control the potassium the way you appear to think you can. ANd the folate starts and stops healing over and over the way you are doing it and making things worse.,but that is not an effective way to do it. It makes the swings get bigger and bigger rather an reaching an equilibrium.


    Have you seen the low "highs" I have described as a max on the B1, B2, B3, inositol? Basically it is a low dose B-complex without CyCbl or folic acid for twice a day (stability), A, D, C, E, multi mineral and multi micro nutrient minerals, lecithin, omega3. Then MeCbl that turns on the neurology, then l-methylfolate, increasing until an increased dose per day stops improving. 800 mcg is a terrible tease, it puts 90% of possible things into worse deficiency and 10% to improving symptoms. Find the dose that each 6 hours starts affecting the folate deficiencies you have worsening after starting MeCbl and potassium, then folate and more potassium, and then AdoCbl daily at 10 mg and in a few days it levels off and stops the increasing of mitochondria loading and then can get around to building more mitochondria after you start the carnitine which is what gets many type of cells actually in production. There is a set of posts pointing out the 8 or 9 "triage" or healing levels in the body based on what nutrients allow them to start. And All four of the Deadlock quartet are critical, and yes, you will reach a maximum amount of potassium that will hold steady for years with minor variations. So when I started copper, the potassium need let me know quickly with a 600mg increase. The Boron increased potassium by 300mg. The molybdenum and manganese increased 150 mg of potassium between them. There is an order of this. Each of the first set of the DQ can affect the same group of several hundred symptoms. They include 100% of the copper but you can't see the copper symptoms (maybe 10 of the original 300) until the methylation to that point starts up. Really only the most deficient nutrients can be seen. Until you get the QD 4 started and stable you can never know what the other things need to be or how much becasue none of it will work right unless you get the foundation built.
     
    Last edited: Jun 6, 2017
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  17. Kathevans

    Kathevans Senior Member

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    I appreciate your replies. @Johnmac The lifestyle aspects are more than important and when I'm under stress things like meditation and gentle walking exercise slip off the schedule. I have a younger sister who is very ill and I do a fair amount of the care-giving. It's not always easy to deal with my own health issues, which have been making themselves felt. Sleep is the first thing to go.

    It's difficult to see what's attributable to what. @alicec and @Freddd I can see my high folate need clearly, but what isn't clear is whether the Adenosyl was driving it higher than it might otherwise have settled at. I want to continue using the oils as the sublinguals upset my stomach. My sense is that the Adenosyl/ Methyl oil once a day...or less...may be sufficient. Using it more than once a day felt like too much. Yet it was having the Adenosyl on board that made the higher folate doses feel good and even possible. Without it, I feel as if I may be in Methyl trap. Using the plain Methyl Oil, I want to be sure a squirt covers the folate I take. I hadn't climbed to this level of B12 with Methyl alone, so the amount I need has been unclear.

    Other basics are pretty-well in place, though I'll do a review to be sure. Then I'll take a look at the Carnitine...
     
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  18. Eastman

    Eastman Senior Member

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    Do you think your methylation protocol had anything to do with your B1 depletion?
     
  19. Johnmac

    Johnmac Senior Member

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    The lifestyle aspects are more than important and when I'm under stress things like meditation and gentle walking exercise slip off the schedule. I have a younger sister who is very ill and I do a fair amount of the care-giving. It's not always easy to deal with my own health issues, which have been making themselves felt. Sleep is the first thing to go.

    That situation does make it hard. Care-giving is one of the high-stress occupations IMO, right up there with mine-clearance and guerilla warfare. I know many people who've crashed their own health from being carers, & have done so myself. (Happy to PM about this subject if you feel a need.)

    All the best...
     
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  20. alicec

    alicec Senior Member

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    It may have contributed but it's hard to know what is causing what.

    As I posted earlier in this thread, I have experienced apparent depletion of nutrients which interfered with the benefits I have derived from B12/folate. Since that post I have run through a variety of minerals and B vitamins and found several more which I needed in moderately high to very high doses for a time.

    Eventually though I reached a plateau and while I continued to gain benefit from B12/folate, overall my energy production was deteriorating. I still felt at times that I was running out of something but what?

    I had tried everything I could think of, including B1, what was left? My B1 experiments were interesting. Everything else had been either helpful or neutral but increasing B1 made me feel much worse. This was puzzling since many other things made me think that B1 depletion could well be my problem. What I eventually came to realise was that the form of B1 I was trying was not the right one.

    For a long time I have taken 50 mg allithiamine daily. This is a fat soluble form which crosses the blood brain barrier. I definitely feel better with it rather than without it yet doubling the dose was simply intolerable. I tried this several times always with the same result. Recently I returned to the B1 question since it seems so obvious to me that I am running out of something. This time I continued with 1 allithiamine but added benfotiamine. This seemed to do the trick. I am still experimenting with how much to add but I suspect that like boron, B2 and biotin, for me, there is an almost bottomless well to fill.

    I understand the difference between the benfo and allithiamine forms and their different modes of action, but I don't at all understand the basis of the different effects in me. In any case, I am inclined to think that the benefit may well be because of stimulation of pyruvate dehydrogenase.

    I had already figured out from OAT tests that I seemed to be burning amino acids for energy (and was depleting them) before the Fluge and Mella study.

    That study made me think a lot about energy pathways and as a quick first experiment I started supplementing an essential amino acid mix. This definitely did boost energy for a while but eventually this petered out (maybe this is when I really badly depleted B1). Further experiments have been derailed by a general decline and shingles a couple of months ago from which I am only now feeling recovered.

    This time around I am trying the amino acid mix and greatly increased B1 together. So far it is making a huge difference but it is early days yet.
     

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