REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Kathevans]

Actually, @Eastman and @garyfritz, I mis-spoke. I was thinking a 'multi-mineral', not vitamin. Of course it was my own fear of the Cutler site's warning on copper in relation to mercury issues that made me stop it back in April. Yet when I re-strted it two weeks ago, it was the first thing to completely alleviate my symptoms for two or three nights. Until, I assume, it was no longer the item that most needed to be refed.

As of tonight, with copper back up to about 1.5 mg and on its way to 2mg, with two splurps of the Adenosyl/Methyl Oil mix yesterday, and about 11,000mcg of Folate,my body seems relatively content (slight frontal headache, which is asking for more folate). Only the need for potassium caused the palpitations that woke me at 3:00 a.m. When I drank the prepped water with 250 mg of potassium gluconate powder, they stopped within 2 minutes.

I agree that multis often have have too many unknowns combined with what you want, but I thought perhaps a mineral combo could help me avoid a stack 5-10 additional supps. Granted, as you say Eastman, it would then be impossible to know if you needed more or less of a particular item...

 

[Eastman]

In that case, I'm using Now's Full Spectrum Mineral Caps.

 

[pamojja]

Life Extension's Two-per-day

Also my favorite at partial dose. Though I never experience negatives from ALA supplementation. Note: LEF has reduced the amound of ALA in its daily dose to 25 mg again, so only 12.5 mg per capsule.

 

[garyfritz]

That's still more than enough to cause trouble if you have mercury, including amalgam fillings. Many people start under 5mg/dose.

Only the need for potassium caused the palpitations that woke me at 3:00 a.m. When I drank the prepped water with 250 mg of potassium gluconate powder, they stopped within 2 minutes.

That's a good idea. I've been having night-time agitation and twitching lately - similar to what I used to have when I didn't get enough b12, but b12 only helps a little. I'm still experimenting but 200mg of potassium (on top of the 200 I already take at bedtime) seems to help. A pre-mixed drink would get into your system a lot faster than tablets.

 

[Kathevans]

All right. I'm in some sort of refeeding hell. And I know @Freddd says that when you're in hell it's no time to go slow. That said, I admit to some confusion as to whether what’s going on is a result of a pure refeeding, sticking close to Freddd's protocol for the DLQ, or whether this also has to do with the fact that I have been using the transdermal combination Adenosyl/Methyl Oil for months, thereby breaking the protocol suggestion that most do just fine on Adenosyl B12 once or twice a week, and that the Adenosyl B12 may interfere with the use of Methyl B12—if I’m explaining this correctly.

In any case, I have used the combination Oil for months, as have others, and it felt good every step of the way. Until the last month when things seemed to go haywire. I’ve slowly increased other cofactors such as copper and manganese and Liposomal C and Betaine HCL and digestive enzymes and I have no doubt that all these items have made my methylation chug along better.

Or just go off the rails.

Then my insomnia grew worse instead of better, I developed daily IBS after seeing it wane, my heart irregularities grew more persistent. Because of a death in the family, a huge and painful stress, I wasn’t thinking as much about what I was doing as I might have. I was in caregiver mode.

In the last week I have found myself in that place @Fredd speaks of as ‘instiable folate and potassium need.’ I stopped the Combination Adenosyl/Methyl Oil only the day before yesterday, yet by then I was needing 4,000mg of Potassium Gluconate per day and seemingly needing to take the 250mg or so dose every hour at night. When I did, it often completely resolved the palpitations and arrhythmias; other times more folate helped to alleviate the cardiac symptoms. Of course, as long as there are palpitations, I cannot lie down and sleep, so it’s one long exhausting night when this occurs.

By yesterday I’d gotten my folate up to 26,000mcg in a 24 hour period and the day went by without symptoms, taking plenty of potassium and my last folate at 8:00 p.m.

Yet I was up every hour with palpitations, and every hour the Potassium resolved them. But when I took 4,000mcg folate this morning at 7:00 a.m, I felt as if I ought to have been taking folate all night rather than go without. This seemed to throw me into another day of refeeding, and I’m still hoping to achieve a balance.

So, here’s one question: how long will it take to rebalance the Methyl and Adenosyl B12s? Would slowing methylation a bit—a bit of extra niacin—help?

What do people use to ease the stomach upset that this much potassium can cause?

I’d appreciate any thoughts you all might have.

Oh, and I haven’t added LCF yet as I kept thinking I’d balance the Methyl/ Adeno B12/Folate and Potassium first.

 

[Freddd]

All right. I'm in some sort of refeeding hell. And I know @Freddd says that when you're in hell it's no time to go slow. That said, I admit to some confusion as to whether what’s going on is a result of a pure refeeding, sticking close to Freddd's protocol for the DLQ, or whether this also has to do with the fact that I have been using the transdermal combination Adenosyl/Methyl Oil for months, thereby breaking the protocol suggestion that most do just fine on Adenosyl B12 once or twice a week, and that the Adenosyl B12 may interfere with the use of Methyl B12—if I’m explaining this correctly.

In any case, I have used the combination Oil for months, as have others, and it felt good every step of the way. Until the last month when things seemed to go haywire. I’ve slowly increased other cofactors such as copper and manganese and Liposomal C and Betaine HCL and digestive enzymes and I have no doubt that all these items have made my methylation chug along better.

Or just go off the rails.

Then my insomnia grew worse instead of better, I developed daily IBS after seeing it wane, my heart irregularities grew more persistent. Because of a death in the family, a huge and painful stress, I wasn’t thinking as much about what I was doing as I might have. I was in caregiver mode.

In the last week I have found myself in that place @Fredd speaks of as ‘instiable folate and potassium need.’ I stopped the Combination Adenosyl/Methyl Oil only the day before yesterday, yet by then I was needing 4,000mg of Potassium Gluconate per day and seemingly needing to take the 250mg or so dose every hour at night. When I did, it often completely resolved the palpitations and arrhythmias; other times more folate helped to alleviate the cardiac symptoms. Of course, as long as there are palpitations, I cannot lie down and sleep, so it’s one long exhausting night when this occurs.

By yesterday I’d gotten my folate up to 26,000mcg in a 24 hour period and the day went by without symptoms, taking plenty of potassium and my last folate at 8:00 p.m.

Yet I was up every hour with palpitations, and every hour the Potassium resolved them. But when I took 4,000mcg folate this morning at 7:00 a.m, I felt as if I ought to have been taking folate all night rather than go without. This seemed to throw me into another day of refeeding, and I’m still hoping to achieve a balance.

So, here’s one question: how long will it take to rebalance the Methyl and Adenosyl B12s? Would slowing methylation a bit—a bit of extra niacin—help?

What do people use to ease the stomach upset that this much potassium can cause?

I’d appreciate any thoughts you all might have.

Oh, and I haven’t added LCF yet as I kept thinking I’d balance the Methyl/ Adeno B12/Folate and Potassium first.

@Kathevans,

I found that insatiable need for me was reduced by bring B1, B2, B3 down to the RDA levels. Inositol too, which I quit. So that is one thing to try, I posted the amounts a number of times. I can dig them up if you need them. Also folic acid, foilinic acid, glutathione, or NAC can cayuse very similar problems. Good luck

 

[Kathevans]

I found that insatiable need for me was reduced by bring B1, B2, B3 down to the RDA levels. Inositol too, which I quit. So that is one thing to try, I posted the amounts a number of times. I can dig them up if you need them. Also folic acid, foilinic acid, glutathione, or NAC can cayuse very similar problems. Good luck

Thanks. I'm not taking inositol, folic acid, folinic, glutathione or NAC, and I believe I'm following your lower Bs suggestions by taking only 1/4 + 1/4 of a Seeking Health B-Minus which has 12.5 mg B1; 10 mg B2; 25 mg B3 Niacin ; 10 mg B6; 250 mcg Biotin; 75 mg Pantothenic Acid.

The B2, actually I've kept a bit higher as I was working on getting my homozygous MAO going and have left it at about 30. I'll drop it tomorrow. And I suppose I need to do a bit of research on low folate foods. I admit to eating too many lentils which I think are high. I know carrots and zucchini are low...

How long for the dust to settle?

 

[Freddd]

When I decreased b-vitamins it took about 24 hours to settle down.I found that it was not only the single item but in total with the others that caused problems. There might also be other factors that I haven't fallen on my face with that you might. Good luck.

 

[Kathevans]

Well, it's days later and nothing has settled. My potassium needs are still sky high. And my folate needs as well--seemingly. I decreased my B vitamins and have limited my veggie folate intake. I wonder if it could relate to some of the minerals I've titrated up on over the past couple of months--copper in particular. I know you've had deficiencies in this @Freddd, but I never showed a deficiency. And I only take 22mg/day of zinc, which reads as high normal on my NutreEval test. My alternative doctor only suggested that I take some to balance out the zinc, saying the copper:zinc ratio related to control of atrial-fibrillation. I did stop the Adenosyl/Methyl B-12 Oils so I am only taking the Methyl now.
All this sleeplessness and heart-pounding and IBS is exhausting me...

 

[Oberon]

There are a few of us who have reacted poorly to supplemental potassium. It seems for the most part you react fine but keep in mind Hyperlakemia can also cause Palpitations, Diarrhea and Muscle Weakness. Maybe try lowering the potassium, or at the very least try adding in some Sodium to see if that helps?

 

[Freddd]

Well, it's days later and nothing has settled. My potassium needs are still sky high. And my folate needs as well--seemingly. I decreased my B vitamins and have limited my veggie folate intake. I wonder if it could relate to some of the minerals I've titrated up on over the past couple of months--copper in particular. I know you've had deficiencies in this @Freddd, but I never showed a deficiency. And I only take 22mg/day of zinc, which reads as high normal on my NutreEval test. My alternative doctor only suggested that I take some to balance out the zinc, saying the copper:zinc ratio related to control of atrial-fibrillation. I did stop the Adenosyl/Methyl B-12 Oils so I am only taking the Methyl now.
All this sleeplessness and heart-pounding and IBS is exhausting me...

Hi Kathie, how much methylfolate are you taking and HOW are you taking it, (how many doses, what size each dose?) ? The main electrolytes need to balance properly, sodium, calcium, magnesium, potassium and phosphorous. It isn't easily available as it is always as part of something, such as phosphatidylserine, phosphatidylcholine and so on. Sunflower lecithin can often be a good choice. In an utterly unsupplemented diet, phosphorus was often the first thing to go deficient according to the old nursing research on refeeding syndrome. If you have a response you will be the first person with specific deficiency symptoms in this situation I am aware of.

It is important to be aware that most of the copper deficiency symptoms are a subset of methylation (folate and MeCbl) deficiency symptoms. The ones I mention are those that remain after the methylation is fully removed as a possibility. Good luck.

 

[Richard7]

Hi @Kathevans

1)I do not know if this will help but I bought phosphorus as tricalcium phosphate I gather it is used as some sort of additive in food - the shop I bought it from was focused on sous vide etc.

2) re potassium I am probably taking more than you at the moment. About 3 tsp potassium chloride a day. The way I have found works best (recently) is making tea with added salt and potassium so I have about 3tsp salt and 1.5 tsp potassium chloride (if I have 6 litres of tea I only had 5 yesterday). I am not using measuring spoons so it is only approximately 4.3g of potasium that way.

I also find that I need to take about .5 tsp potassium chloride first thing, mid afternoon and before I go to sleep. I do this with a cup of water followed by a cup of tea or a 50/50mix. In this volume the potassium does not seem an issue.

I also used to make up a glass of salt and potassium and place it in my bedroom so it was available middle of the night use and to ocassionally need to put MgSO4 solution on my skin part way through the night.

I hope some of this helps.

{ For completeness I should also add that I am not in the middle of a methylation protocol and that I am also doing MgCl foot baths day or two and taking 800mg calcium, 400 magnesium, 50 zinc and 2mg copper and lots and lots of B2 (I seem to need about 250mg in 50mg doses over the day) and a bunch of other things. I do not seem to need the tricalcium phosphate at the moment but there have been times when I seem to need about 0.125 tsp twice a day almost everyday.

And I do get some palpitations but at the moment they are pretty mild and mostly happen just before another dose is due.}

 

[Kathevans]

@Freddd, @Richard7 , @Oberon Thank you for your thoughtful replies. I am currently taking 3 squirts of the Methyl Oil per day to make sure I have enough B12 around, I am taking 4 doses of 4000 folate, usually 3200 at bed, and another 4000 or so through the night, which gets me up to 25000 or so.

On and off today I lowered my potassium dose to the usual 250 mg of Potassium Gluconate powder in water, but have found that I need twice that, or 500mg to hold off palpitations for an hour and a half or two hours, sometimes longer during the day. I topped out at about 8 grams the other day, and yesterday reached 6. I had my electrolytes tested the other day and my potassium was 5 in the range of 3.5-5.2. The highest it's ever been. Sodium was 34 I believe, just below the low end of the range. I use salt liberally, but mine has always been low.

In the night I'm continuously woken...if I manage to sleep..by the palpitations. I usually begin wth the potassium, but sometimes find that my heart continues to race until I add the folate. My stomach is gurgling away, and the last several nights I have diarrhea once or twice at some point in the night, though that symptom doesn't contnue to occur during the day. I have also sipped water with a quarter teaspoon of sea salt in it, and sometimes that resolves the palpitations...

I wonder about increasing my B2, as that is a supp I titrated up on because of my MOA snp...and worked with the iodine, selenium and molybdenum that support it's healthy function. For a year or so the doses I was taking didn't seem to effect my potassium or folate levels negatively, which is to say, I settled in to about 45mg of B2, took 1500-2000mg of potassium, and ranged in folate up to a few thousand. For those of us with the MAO snps, B2 is supposed to help recycle folate and B12...though I can't say I fully understand what that means. Now I've lowered it t your very low specifications, Fred, which may not work as well for me...

It was when I began to use the Adenosyl-Methyl Oil regularly, first at one splurp a day, then up to two regularly, occasionally three, that the folate and potassium needs began to go up so fast. As I say, I was so busy caring for my dying sister ( breast cancer 16 years, brca2) that I let things get out if hand. Some nights I wouldn't be able to sleep with the heart irregularities, but these alternated with nights when I'd get 5-6 broken hours and that would see me through. The amazing thing is, this methylationis a bit like cocaine for me (if I knew what that was like!). Once I get past morning exhaustion, I can chug or push through the day.

But I've ended up in this place.

Phosphorous sounds like a good possibility. I believe mine has been low on some electrolyte tests. I've never had sunflower lecithin..isn't lecithin found in eggs? My doctor had me stop my dail eggs..replaced with egg beaters..because of sky-high cholesterol--despite my 112lb size, it was up over 300, now below but still high. I'm just wondering if stopping my eggs three months ago has somehow contributed to this problem...

It may also be that while I've stopped the Adenosyl oil, it will take a while to stop causing any problems it might have been...given it lasts longer than the Methyl. Or simply that my body is getting over its rather addictive need for it.

But as I say, I'm going to look into the phosphorus tomorrow... @Athene* Continuing potassium discussion...

 

[Freddd]

I would like to do a little potassium theory from observed response over years. It appears to me that there may be a genetic situation that prevents potassium demand in serum causing enough to transfer from tissue, at least not fast enough to satisfy need. I'm not sure, but this potassium uncertainty appears to come in a variety of characteristics sets. The closest to satisfactory method I have found is drinking water with potassium gluconate dissolved in it at 1 teaspoon (measuring) that provides 375mg of potassium each tsb in 8 ounces. I also take 800mg at each of 2 meals.

I want to cogitate upon what several of you have said. I feel like maybe something in combination is almost seen. Good luck

 

[Kathevans]

Meanwhile, @Freddd, I just looked up lecithin and see that it's my beloved egg yokes that have the lecithin I've been depriving myself of for these last several months. Tomorrow I'll probably have eggs! And I've just placed a big order at iHerb for NOW's Sunflower Lecithin. The order also included Boron, which I've never used, but will test, and of course, more potassium!

The closest to satisfactory method I have found is drinking water with potassium gluconate dissolved in it at 1 teaspoon (measuring) that provides 375mg of potassium each tsb in 8 ounces. I also take 800mg at each of 2 meals.

I dissolve a teaspoon and a half in a big glass of water and drink it down--this yields about 525mg of K+

 

[Eastman]

@Kathevans

Have you had an ECG done recently? Your heart palpitations have been very persistent and probably merits a proper check.

Also, have you seen this thread?

 

[Kathevans]

@Eastman Thanks for your information. I think we've discussed thiamine here before and I will look into it again. I have some Allithiamine here that I haven't tried, which I may crack open. But I do think that given my no-egg journey recently, I'm going to look into the sunflower lecithin first. Also, unlike @Thewonders92, I've been eating well most of my life, had a mother who was really into Adele Davis, have never drunk, and don't happen to have any SOD2 genetic snps--though I'm sure I have many others, as below! But still, I do have a messed up gut...

As to the EKG, I've been haltered within the last two months and am in touch with my cardiologist. In fact one of my best friends is a cardiologist! and I have an appointment with an electrophysiologist in October. Of course, like @Thewonders92 I'd like to find a non-intrusive solution and for all his posts, thanks, too. I learn something here on a daily basis. I have always been cautious about my approach, which is why I'm so surprised to find myself in the situation I'm in with the huge potassium need. But it's clear that pushing methylation has enormous consequences and I've slipped into that category. Whether it's the lecithin alone, or in combination with copper and thiamine and other things---well, we'll have to see. At least I have a couple of good tacks to take as I head into my day.

Really, thank you all.

 

[Kathevans]

@Freddd @Eastman @Richard7 So just a quick note to comment on remarkable results over the course of this afternoon and evening. At this time yesterday, I'd used roughly 5250mg of Potassium, on my way to an alarming 6300mg. Today, which includes 4 doses of 525 between 1:30 a.m. and 10:15 a.m. when I began to supplement both 12mg of Allithiamine (twice today) and a single gelcap of 1200mg Sunflower Lecithin, I am up to 3675. So, an instant drop--as you said, Fred, once the most needed supplement (I suspect the thiamine, though, a possible second, the phosphorous) is added in.

All I can say is, what a relief. I felt instantly tired, as did the member on Eastman's referred thread when he took the thiamine; and an instant cessation of the heart palpitations. I have been careful to wait until I feel my first flutters before drinking more potassium, to make sure I'm not over-dosing. I also noted an instant shift in the constant IBS--that is, that it is more closely related to folate need, which I am probably close to filling at about 16-20mg/day though this remains to be seen.

As to the thiamine and/or phosphorous: after going over this thread last night, I actually got up and had two poached eggs on gluten-free muffins and went back to bed. I had a two hour stretch of solid sleep without a palpitation. Possibly the lecithin in the eggs?! Well, who knows. It was a treat to have poached eggs in the middle of the night.

I am reminded of my entry earlier in this thread from a few weeks ago Fred, when I commented that my potassium need had surged about a thousand mg, seemingly related to the Adenosyl B-12, or some such. The truth is, this was wrong. I think you said that potassium didn't go up that way, and yet, of course it did, but not for the reason we were both thinking, which is a certain specific amount related to the addition of a particular supplement or cofactor. What was happening to me was the very 'refeeding syndrome' that this thread focusses on; not on potassium need related to the addition of a supplement, but a potassium need that is an insatiable thirst because something else is missing.

And once found, this need disappears. Well, this may not express what happens accurately, but I think it is a lesson that when things don't go as you have clearly marked out, in the ratcheting up of methylation supplements, then something is wrong. It was too easy for me to think that I was just different, and be left to wonder why for me all of this protocol was so challenging.

The answer is nothing more than that I was/or had forced my body to become seriously deficient in something else. I had pushed my body into the 'refeeding syndrome." It has been a very uncomfortable place to be for some time...

This is probably not the end of this particular story, but it's a good beginning. I hope that I'll be able to post more positive results over time...

A nod to @Athene*

 

[Chocolove]

...didn't realize the seriousness of the gum situation and where it was heading. Neither did my dentist. I was trying to do everything right in taking care of my mouth.

With regard to the dental/gum issues, have you looked into vitamin K2? I searched to see if you have discussed K2 anywhere but have been unable to locate a posting about it. I've been doing a bit of research on vitamin K2 and think you will find it interesting.

There is a lot of information out there about K2 being missing from the American diet with resulting dental problems, among other issues. There is also evidence of reversal of dental carries from addition of K2 to diet which allows for remineralization (...actually requires three essential factors: vitamins A, D, and K2.) It appears that this combo will ensure development of healthy teeth, preventing or reversing (halting) tooth decay.

The book Vitamin K and The Calcium Paradox details how Vitamin K2 is needed to usher calcium into bones and other necessary places in the body and keep it out of soft tissue, arteries and the heart. Magnesium is also important for this process and without the needed K2, D3 and magnesium, inappropriate calcification is more likely causing hardening of the arteries and heart. Heart disease is still the primary killer in the USA.​

https://www.amazon.com/Vitamin-K2-Calcium-Paradox-Little-Known/dp/0062320041/ref=as_li_ss_tl?ie=UTF8&qid=1432749027&sr=8-1&keywords=vitamin K and the calcium paradox&linkCode=sl1&tag=wellnessmama-20&linkId=ZOYHBUHISOBQ4IPQ

Dentin is unique among the tissues of the teeth for its expression of osteocalcin, a vitamin K-dependent protein better known for its role in organizing the deposition of calcium and phosphorus salts in bone... Matrix Gla protein (MGP), which is required for the mineralization of bone, is also expressed in dentin.55 Vitamins A and D signal odontoblasts to produce osteocalcin,56,57 and probably regulate their expression of MGP as well. Only after vitamin K2 activates these proteins’ ability to bind calcium, however, can they lay down the mineral-rich matrix of dentin.

https://www.westonaprice.org/health...y-two-year-old-mystery-finally-solved/#dental

This study of rural Chinese centenarians showed that centenarians eating a diet high in the K vitamins, without any processed carbohydrates, were able to keep all of their teeth at age 100 despite never brushing.
https://www.ncbi.nlm.nih.gov/pubmed/12292593

Dr. Judene Benoit DDS "... has helped many people remineralize teeth and is the author of the book How to Stop Cavities: A Natural Approach to Prevention and Remineralization."
https://www.amazon.com/How-Stop-Cavities-Prevention-Remineralization/dp/1546305262/ref=sr_1_1?s=books&ie=UTF8&qid=1505410517&sr=1-1&keywords=how to stop cavities

Noting that you've had liver problems, I wonder if you have tried consuming grass fed beef liver? It has a lot of B vitamins when not over cooked, along with many other essential nutrients including vitamins A, D and K2. I have consumed some rather massive portions of beef liver in a short period of time, to great benefit. Why grass fed? Grass fed is apparently required to ensure production of vitamin K2. Apparently much of the cattle in the U.S. are not fed on grass.

From looking at dietary consumption studies, there is a lot of high calorie mal-nutrition in the U.S., which is greatly worsened by the many drugs there taken.

@Freddd I hope some of this information may help you. You have been so kind to help others in need despite your overwhelming burdens. I hope that this info will repay some of the time you lost through that expense.

 

[Richard7]

I am glad to hear that something worked @Kathevans