REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Learner1]

You can safely get one or more IVs of iron to bring your levels up.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459360/

Not sure if they would be helpful, but you might want to look into IV vitamin C and/or curcumin, as well as oxygen therapies and a ketogenic diet, which might expand your alternatives.

Somehow, I'd missed this thread until now, and just read through all of it. Some thoughts come to mind:

1. This is a wonderful example of how unique we all are, and very much it pays to be self-aware of one's symptoms and genetics, and doing frequent lab testing.
2. What works for one person, at any given point in time, is not likely to work for others, or even the same person at another time. (See point 1.)
   
3. As a stage 3 cancer survivor from a family that doesn't methylate well, I unfortunately became aware that imbalances in methylation at different points in the methylation cycle can promote the development and proliferation of cancer. (See attached.) Therefore, the self-experimentation in very high doses of folate and B12, without testing and without a doctors supervision can be EXTREMELY dangerous and unwittingly promote cancer.
4. Most ME/CFS patients do not have the problems discussed on this thread, but unfortunately, many are blindly following the advice here, that can lead to trouble. Many of us have other SNPs and environmental factors that lead us to entirely different dosing and balance of nutrients.
   
5. It is worrisome that there is no discussion of the transsulfuration pathway and what it does, very little discussion of B2 and B6 and the many other roles they play in our biochemistry that could be significant for ME/CFS patients, and the benefits of glutathione production and recycling in this group of patients with enormous oxidative and nitrosative stress.

Obviously, some very useful exploration exists here for those who share the problem of refeeding and the unique genetics that make them more prone to it.

But, I just wanted to point out that each of us must really be aware enough to understand which group we fit into, and ideally do enough labwork to verify and possibly even solve the problems, rather than blindly following what a few unique patients are doing and unwittingly doing even more harm.

 

[Kathevans]

'I mistakenly ordered a methylfolate with glycine (10 bottles!). Is glycine on the list of glutathione precursors? If so I'll just have to dump it." - That is the MethylPro l-methylfolate. I take TMG, trimethylglycine, and various things that use the glycine. It appears to be no problem at all. My usual order from them is 4x90 15mg caps and 1 bottle of their Quatrefolic product. I think both of them are quite excellent. Either one works for about 3 months for me and then suddenly it doesn't and I have to switch to the other for a day or two and then the effectiveness of returns of the original. I take 15mg 3 times daily, one on wakeup, one at bedtime and one with my late afternoon medications. I don't take it with food and and the stack of everything else becasue I have some things blocking other things and I didn't know whether the mfolate was being blocked by anything else. Then I switch to the MethylPro Quatrefolic. It's more expensive so I and my partner both use it as our 1-2 day refresh mfolate that gives back the effectiveness of the original product used. She has quite a different problem than I do but has the same thing happening with the mfolate.

Hi, Fred,

I have been using the MethylPro for about a month now, and am happy with the doses they offer and the pricing. But in my three years or so of experimentation with methyl folate, I have never used the Quatrofolic product. Since starting boron (now up to about 12 mg/ day, and clearly working to heal the oral mucosa bacterial/ fungal infection I have had for over 20 years) I have, however had increasingly higher folate demands. Currently, I am awash in folate, taking up to 60 or so mg/ day, often through the night in response to heart irregularities. My ibs has disappeared, or is on the edge of disappearing, though as soon as I pull back on the boron or the folate, it reappears for an evening interval which I was plagued with for the past couple of years.

In this nighttime refeeding rotation, my body has responded alternately to Folate and boron mostly, but to Adenosyl B12 (particularly when I have held the Transdermal oil to only one splurp/day...I seem to need at least 2), and over the last two weeks to Sunflower lecithin, which I suspect is either phosphorus (though my bloodwork showed it to be high-range just two weeks ago) or choline, which I have ordered a Citicholine supplement for. (I do homozygous PEMT snps, which I think need extra choline).

I am wondering first, whether this high folate thrust is what you recognize as needing a 2-day break with the Quatrefolic Folate to restore to more normal folate levels...? Or is it possible that the healing being facilitated by the boron simply requires more folate? How high have you seen folate levels go in your methylation protocol? Or is it possible it is covering another supplemental deficiency that I haven’t discovered?

Refeeding has become a stressful, often all-night scramble to find the substance that alleviates a pounding heart or allows me to drift off to sleep.

I will confess that while my doses of most of the lower Bs is kept fairly low with my B-Minus multi,I do take 150mg of Benfotiamin, titrated up over a year ago in response to beri-beri type symptoms; and I have titrated up my B2 to 200mg/day, in an ongoing attempt to achieve something better that the “high need” category on my regular NutrEval tests...a goal I have yet to achieve.

I know you, Fred, would suggest these might be driving the folate, though in the past while on these high doses of B1 and B2, I varied the folate from 5-20 mg/day with no refeeding symptoms... And perhaps I will try holding back on them for a few days just to see. Though when I was refeedng thiamin, one of the major things it resolved was heart palpitations and other irregularities.

Any thoughts from you, as well as others are most appreciated... especially those of you who have found boron useful...

 

[drmullin30]

My experience with the Quatrefolic was that once I was taking larger doses (25-50 mg per day) after several months I needed to switch it out for Metfolin for a few days and then I could drop my dose again. I have to do this cycle every two to three months. The Metfolin is damned expensive compared to the Quatrefolic though.

 

[drmullin30]

On another note, I think I have induced a sodium deficiency because of my high potassium intake and lack of processed food in my diet. My hyponatremia symptoms are very similar to potassium, copper and calcium deficiencies and it took me a while to figure out. Spent a couple of days shivering on the couch before I realised that the potassium was actually making me worse. If you are on a paleo type diet with little or no processed food, you might not be getting enough sodium if you're taking a lot of potassium.

 

[SickOfSickness]

On another note, I think I have induced a sodium deficiency because of my high potassium intake and lack of processed food in my diet. My hyponatremia symptoms are very similar to potassium, copper and calcium deficiencies and it took me a while to figure out. Spent a couple of days shivering on the couch before I realised that the potassium was actually making me worse. If you are on a paleo type diet with little or no processed food, you might not be getting enough sodium if you're taking a lot of potassium.

I ended up with thyroid issues because of too little iodized salt. (I was eating plenty of sea salt.)

 

[junkcrap50]

Has anyone had low ferritin levels as a result of Fredd's protocol & refeeding syndrome?

 

[drmullin30]

Hi J, iron is dependent on copper for absorption etc. Most of us who have success on the protocol end up copper deficient and need to supplement fairly large amounts probably due to healing which could cause anemia and mess up your ferritin levels.

I also have had symptoms of anemia while on the protocol but I haven't been tested. I try to eat enough red meat to cover my iron needs. You can take Vitamin C with red meat to increase iron absorption.

 

[triffid113]

Freddd, your original protocol called for 50mg of zinc and I have pretty much been taking apprix. that ever since. I am female and need this much to run my thyroid and adrenal glands and make stomach acid and see (w/o fuzzy vision), and stave off allergies (of which I have many, severe).

The person above mentioned aftenal exhaustion treated with steroids instead of nutrition. I had that before...I forgot hiw I treated it, I followed whatevet Adele Davis said. But my whole life I have had to assist my adrenals, pethaps due to allergies, or...? I have low blood sugar, a symptom of poorly functioning adrenals, since it is the adrenal gland that tells the liver to break down glycogen. Zinc is very important for the adrenal gland. In my 40s I had to use rhodiola to augment my adrenal gland and by 50 I flat out had to supplement DHEA. And now I supplement all three Better living through chemistry.

But now I am dating men of the age to get BPH and I find, as of 2019 review, that zinc is THE supplement (along wirh citrate) to avoid BPH. It is a 5 alpha reductase inhibitor. But more importantly, it keeps citrate in the prostate from being turned into ATP by the TCA/Kreb cycle. Apparently the prostate needs citrate to make semen and every study of prostate cancer showed low zinc. Well, a guy I care about very much has BPH even though he had 11.5mg zinc in his multi. I don't believe it's enough. So I came hete to find out why you chose 50mg. And I see you dropped back to 15. I want then to put it to you that I doubt it's enough to avoid prostate cancer. Be aware! And I would loke to hear a Cliff's Notes version of what forced u to change the dose. I am low in copper too, but not that low.

Take care, and thanks.

 

[pamojja]

So I came hete to find out why you chose 50mg. And I see you dropped back to 15.

Too took in average 50 mg/d for the last 12 years against low end of normal serum zinc. Always starting at a low dose and gradually increasing while monitoring tests. When reaching 50 mg I heeded the advise to balance with at least some copper. I for long regret, because my high normal copper shoot up to above normal, and I haven't been able to correct my awful serum copper:zinc ratio yet. My highest of 70 mg/d drove whole-blood zinc up above normal, while serum zinc still low normal. Settled at about 65 mg/d, where at least my whole-blood zinc came down again.

Better don't take high dose zinc, or even copper for well meant balancing, without closely monitoring blood levels.

 

[Freddd]

Freddd, your original protocol called for 50mg of zinc and I have pretty much been taking apprix. that ever since. I am female and need this much to run my thyroid and adrenal glands and make stomach acid and see (w/o fuzzy vision), and stave off allergies (of which I have many, severe).

The person above mentioned aftenal exhaustion treated with steroids instead of nutrition. I had that before...I forgot hiw I treated it, I followed whatevet Adele Davis said. But my whole life I have had to assist my adrenals, pethaps due to allergies, or...? I have low blood sugar, a symptom of poorly functioning adrenals, since it is the adrenal gland that tells the liver to break down glycogen. Zinc is very important for the adrenal gland. In my 40s I had to use rhodiola to augment my adrenal gland and by 50 I flat out had to supplement DHEA. And now I supplement all three Better living through chemistry.

But now I am dating men of the age to get BPH and I find, as of 2019 review, that zinc is THE supplement (along wirh citrate) to avoid BPH. It is a 5 alpha reductase inhibitor. But more importantly, it keeps citrate in the prostate from being turned into ATP by the TCA/Kreb cycle. Apparently the prostate needs citrate to make semen and every study of prostate cancer showed low zinc. Well, a guy I care about very much has BPH even though he had 11.5mg zinc in his multi. I don't believe it's enough. So I came hete to find out why you chose 50mg. And I see you dropped back to 15. I want then to put it to you that I doubt it's enough to avoid prostate cancer. Be aware! And I would loke to hear a Cliff's Notes version of what forced u to change the dose. I am low in copper too, but not that low.

Take care, and thanks.

Hi Triffid (everybody needs a field of Triffids),

I have since increased my daily zinc to 40 mg. 50 mg was the lowest anybody claimed to cause a problem with copper, and 100 mg or more did so ,much mo re commonly. I had been unable to bring my copper up to a working level so lowering zinc for a while was a trial. It turns out that after 4 years of titrating Lithium Orotate from 5 mg to 20-30 mg, my electrolyte balance including copper and other things are now better balanced then ever before in my life. The Lithium allows the TransCobalamin Receptor-Li to be built and somehow as it increases it does more balancing. It also allocates B12 and controls healing and cell formation in order and without the merry-go-round refeeding syndrome. Instead it manages the healing much better than without the TCR-Li.

The TCR-Li is supposed to deliver cob[ii], the catalytic B12 form. However to make cob[ii] requires cob[ii]. TO build the cells without the cob[ii] requires MeCbl and AdoCbl instead in the right proportions. Lots of people have problems with the copper. Now it is balancing better and getting smoother..

In mid serum range of copper I had neurological damage from lack of copper , liver damage, liver problems from antibiotics and much else. After I got enough ,methylfolate to get my MCV to about 92, suddenly I went low enough on copper that it shot me up to above 100.x for MCV and now copper brings it down.

I had used zinc at 50 mg since the early 70s. I also read Adele Davis and PREVENTION and my M-I-L helped me a lot on vitamins.. She was correct on a lot of things but for the wrong reasons at times.. She didn't know either, but did know the foods that work.

Read the link below and many things might become clear. Be well.

https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186

 

[triffid113]

Thanks, Freddd. I want to add here that 90% of men get BPH, enlarged prostate between ages 70-80. Research has identified zinc and citrate as needed to avoid it. I'll come back 2 put a reference to the paper.

Cheers!

 

[triffid113]

Freddd, I forget... do you take DHEA? I feel that DHEA has done so much for me, but I'm female. What does it do for men? Thanks.

 

[triffid113]

Also, if u wanted to help someone with concentration issues and he would not take a lot of supplements, got any idea what would improve concentration enough that he could then even *consider* other supplements? Kindof a bootstrap supplement? Thanks

 

[triffid113]

Um, back to copper/zinc. I started taking a 2 mg copper pill right before bed. Thought it would keep me awake, but instead it seems to improve sleep. Is it my imagination? Did you notice anything like this?

 

[Lalia]

Hi @Freddd, thank you for sharing all this information. I’m having the same issue at the moment with my gums melting away. I noticed in your original post you mentioned something about your eyeball tissue. Could you explain what happened here? I have noticed when I pull the skin away from my eyes the connective tissue looks very red and sticky. It’s not right, just trying to work out if this is another clue that points to copper deficiency while I wait for tests to come back. Thank you

 

[Freddd]

Hi @Freddd, thank you for sharing all this information. I’m having the same issue at the moment with my gums melting away. I noticed in your original post you mentioned something about your eyeball tissue. Could you explain what happened here? I have noticed when I pull the skin away from my eyes the connective tissue looks very red and sticky. It’s not right, just trying to work out if this is another clue that points to copper deficiency while I wait for tests to come back. Thank you

Hi Lalia,

I don't recall any eyeball tissue issue. However, low copper and possibly low boron can cause damage to gum and bone and runaway bacterial films on teeth and bone causing problems for implants as well. I need about 75 percentile copper level for normal use. Gums should be healthy PINK (not red, purple, deep red, etc) PINK.

And helping good cells being made MeCbl, AdoCbl, L-methylfolate and l-carnitine. Copper does nothing without the Deadlock Quartet and Lithium.

 

[L'engle]

Interestingly, as Fred describes in his REFEEDING thread, I had all the symptoms of refeeding--ibs, heart irregularities, higher potassium need, excruciating insomnia--and am still, even after two months, refeeding Boron. I have only just reached the 3mg that the NOW tablet contains (and the Life Extension multi) and I will say that Boron has changed my life. My host of symptoms, while still there, respond better, my arthritic, painful hands bend easily for at least portions of the day, I am sleeping more deeply most nights, my need for B-12 had dropped, as has my Folate dose (from about 15mg/day to about 5-6mg). All in all, it's amazing. And most of all, I have begun on some days to feel 'normal'. Not better, but headed in that direction. This after being ill for about 25 years.

Boron is helping me with runaway magnesium loss. So far it isn't having other effects but htis one is great anyway. Did you keep taking it?

 

[Freddd]

Oh yes. I have continued small doses of a boron mineral. It made very noticeable changes very quickly when I
was deficient of it.