REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Freddd]

Hi Alicec,

I had been taking 1mg of Boron in a multi mineral but that turned out to be insufficient, and I suspect that the way to do is with all those things, all the various ones as a group. For instance manganese and copper are both needed for connective tissues. The thing these all have in common is that they appear to generally affect a small spread of specific symptoms. So for me while I got sores at the corners of my nails with peeling cracking skin with folate defiency but alway with IBS and angular cheilitis and after a month of folate deficiency at that, and not in a few days like the others. Those came back as it turns out when the trace minerals were at cause, multiple ones. So copper, manganese, boron and molybdenum all appear to be involved in some way. In a matter of days those have all healed up and shed off leaving normal healthy skin. However, in reading on copper for instance, one can be at a good serum value which needs to be maintained all during healing and however long it takes to get the reserves built up which is said to be "very slowly". As I have learned my tested trace minerals are "in range" but were at the low end. I have learned also that a trial is needed to know and because they overlap in effect so much I am trialing them as a group, titrate down when the healing is apparently complete and my levels are at least in the higher mid range, and check them periodically.

I'm working on updating the list of responsive symptoms grouped by nutrients, and they are cumulative as they are all needed for the duration of healing at least. Potassium defciency symptoms are often the best indicator along with methylfolate deficiency symptoms of what is going on. For me, it looks like the healing of my spider veins has gotten faster after adding the other 3 trace minerals, each making an increment in how much and how fast it is happening. A distinguishing feature appears to point at B1, B2, B3 ,inositol excess is increased folate and/or potassium deficiency at same time as increasing symptoms that had already recovered a lot. Copper increased my K need by 400mg/day.

There may be a while lot of other things that would appear over time but I have very few symptoms left that are affected by anything. You are much earlier in the process. I have been working on this since 1978 to be able to understand what was happening to me as a system, which has grown from the fast major deficiencies through a lot of layers, (triage levels maybe, never seen that well defined) too the trace minerals. And there are a whole lot of differernt pathways not yet defined.

 

[SJB944]

@Freddd In methyltrap, where for some reason Mb12 doesn't get into the cell, and l-methyfolate is expelled, what happens to potassium? Does the need for potassium also increase? Or is this unrelated?

 

[sregan]

@Freddd, you mentioned copper helped you sleep better and was helping your gums. Did you notice any other symptoms that taking the copper seemed to make better?

 

[Freddd]

@Freddd, you mentioned copper helped you sleep better and was helping your gums. Did you notice any other symptoms that taking the copper seemed to make better?

YES! I was having demyelination in upper motor neurons. With those there is a weakness feeling. That is gone. My spider veins are about 50% faded out. My varicose veins are normalizing. My gums went from cyanotic (bluish) and uncontrollable inflammation to normal in both ways. The runaway tooth decay in my mouth is gone instead of 3 or 4 new carries at my visit today. My testosterone level went up 300ng/L so my replacement dose had to be corrected. My MCV reduced below 96 for the first time in memory. My eGFR (kidney performance in percent) went to 80 from < 70 after years unchanged. And the spider veins have increased ratre of fading away with boron, manganense and molybdenum. Those three are single pills of low dose. Only the copper was titrated by effect. I could feel it in 4 hours (felt less terrible which had been increasing rapidly) and felt noticeably better in 24 hours. AS I went up from 5mg to 15 mg by 2.5mg increments it was by feeling the difference, each 2 days and well within the up to 20mg used in a study of deficiency correction, also titrated by effect.

My toe nails had become very brittle and my hair. It hasn't been long enough yet to find a difference. It may have restarted my male pattern hair lose which went on hold for 20+ years. That may go along with the testosterone increase or more active testosterone.

 

[sregan]

YES! I was having demyelination in upper motor neurons. With those there is a weakness feeling. That is gone. My spider veins are about 50% faded out. My varicose veins are normalizing. My gums went from cyanotic (bluish) and uncontrollable inflammation to normal in both ways. The runaway tooth decay in my mouth is gone instead of 3 or 4 new carries at my visit today. My testosterone level went up 300ng/L so my replacement dose had to be corrected. My MCV reduced below 96 for the first time in memory. My eGFR (kidney performance in percent) went to 80 from < 70 after years unchanged. And the spider veins have increased rate of fading away with boron, manganese and molybdenum. Those three are single pills of low dose. Only the copper was titrated by effect. I could feel it in 4 hours (felt less terrible which had been increasing rapidly) and felt noticeably better in 24 hours. AS I went up from 5mg to 15 mg by 2.5mg increments it was by feeling the difference, each 2 days and well within the up to 20mg used in a study of deficiency correction, also titrated by effect.

Wow, truly a great find! We're lucky to have you here and, if I haven't said so before, thank you for contributing everything you have so far.

I did read about your Testosterone in your earlier post. Copper, like Iron, I think is one of those minerals that we (US) have been conditioned to avoid likely because it seems a small amount can easily be too much. We're told there is plenty of copper and iron in the diet.

My toe nails had become very brittle and my hair. It hasn't been long enough yet to find a difference. It may have restarted my male pattern hair lose which went on hold for 20+ years. That may go along with the testosterone increase or more active testosterone.

For me, Biotin, will make my finger/toe nails grow like crazy and supposed to do the same for hair. Not sure how that fits in with whatever you are taking now.

I could feel it in 4 hours (felt less terrible which had been increasing rapidly) and felt noticeably better in 24 hours.

That's what I was looking for. "Less terrible"... Your mental state/outlook/cheerfulness/optimism whatever you want to call it was much better? Seems the testosterone boost would do some of that.

 

[Freddd]

@Freddd In methyltrap, where for some reason Mb12 doesn't get into the cell, and l-methyfolate is expelled, what happens to potassium? Does the need for potassium also increase? Or is this unrelated?

First there are several reasons to clarify.

1 - Folic acid, folinic acid and vegetable folates can block (appears to be competition, a non active form taken into the cell instead of l-methylfolate) in an unconverted level. For folic acid, 20% of population can't convert at all, 30% can convert from >0 to < 800mcg so they can be anywhere from almost 800mcg to almost zero conversion so how fast it accumulates is individual, and 50% can convert up to 800-1000mcg daily. However, in large doses everybody accumulates folic acid. The percentages for folinic acid and veggie folates is unknown but is a sizable percentage of the population with CFS/FMS etc. For me I found that folic acid could block about 10x as much l-methylfolate approximately and for folinic acid about twice that, 20x as much l-methylfolate. Onset of folinic and veggie folates blockage for me was quicker than folic acid, 1+ day compared to several days of folic acid. That might simply have been relative dose and blockage multiple (10 to 20x). While this acts about the same as methyltrap, it is not of the same cause.

2 - Glutathione ("detox"), NAC ("detox"), cyanide, bismuth in some rare people, arsenic, nitrous oxide regular usage and probably some other items and outright deficiency for any reason can cause widespread methyltrap (at least entire compartment, or internal triage levels, often everything). It combines with active cobalamins chemically (no enzyme or ATP needed) to glutathionylcobalamin and then is rapidly excreted. As circulating active b12s amounts generally to less than 10 mcgs , a few mgs of glutathione is 1000 times over enough to destroy all circulating b12 which is where MeCbl comes from for usage. In some people, like me, it is all over, b12 gone and impossible to restore in 2 hours, as along as glutathione was continued. Cyanide works as fast. Other things act more slowly.


3 - HyCbl, CyCbl, AquaCbl, some (presumed) isomers of MeCbl and maybe AdoCbl appear to cause in some people a "by the cell" methyltrap which quickly appears as acne or similar lesions quickly. It might be called a partial methylation block . The blockage percentage appears to depend on the percentage of active MeCbl compared to non-methylating B12 available in serum circulation (not HTC2 carried) .

So now that methyltrap vs partial methylation block is more or less described, the symptoms are the same. The potassium is used as the cell grows after the MeCbl/Folate has done it's stuff. How much potassium is needed in days to come depends upon how many cells are started today and tomorrow and so on. Also, with the multiple compartments (internal triage levels) some compartments can be healing and generating potassium need and others can be in methyl trap or partial methylation block and not increasing potassium need.

 

[Freddd]

Wow, truly a great find! We're lucky to have you here and, if I haven't said so before, thank you for contributing everything you have so far.

I did read about your Testosterone in your earlier post. Copper, like Iron, I think is one of those minerals that we (US) have been conditioned to avoid likely because it seems a small amount can easily be too much. We're told there is plenty of copper and iron in the diet.



For me, Biotin, will make my finger/toe nails grow like crazy and supposed to do the same for hair. Not sure how that fits in with whatever you are taking now.



That's what I was looking for. "Less terrible"... Your mental state/outlook/cheerfulness/optimism whatever you want to call it was much better? Seems the testosterone boost would do some of that.

Hi Sregan,

I take 1000mcg a day of Biotin. It is involved with the AdoCbl generation of ATP. Deficiency can bring ATP to a hlat with then can bring methylation mostly to a halt, deadlocked. ATP is involved in the actual growth of the cell, supplier of energy for so many items.

Copper is mostly a problem from areas with acid water that dissolves your pipes (copper) and solder (lead and tin) or where there is environmental copper.

 

[garyfritz]

3 - HyCbl, CyCbl, AquaCbl, some (presumed) isomers of MeCbl and maybe AdoCbl appear to cause in some people a "by the cell" methyltrap which quickly appears as acne or similar lesions quickly. It might be called a partial methylation block . The blockage percentage appears to depend on the percentage of active MeCbl compared to non-methylating B12 available in serum circulation (not HTC2 carried) .

So now that methyltrap vs partial methylation block is more or less described, the symptoms are the same. The potassium is used as the cell grows after the MeCbl/Folate has done it's stuff. How much potassium is needed in days to come depends upon how many cells are started today and tomorrow and so on. Also, with the multiple compartments (internal triage levels) some compartments can be healing and generating potassium need and others can be in methyl trap or partial methylation block and not increasing potassium need.

I've been getting small skin lesions (kinda acne-like, small flat red spots) on my midsection, and itchy bumps on my back/sides, roughly since I started using the B12oil product -- which I think would be roughly when I finally got enough B12. Are you saying that's a symptom of potassium deficiency? So as long as I have those lesions, I should increase my potassium? And/or should I increase methylfolate?

 

[SJB944]

Cheers @Freddd, doesn't explain my increase in need for potassium though. Seems this only get more complicated -when it works, it all seems so easy...

 

[Freddd]

I've been getting small skin lesions (kinda acne-like, small flat red spots) on my midsection, and itchy bumps on my back/sides, roughly since I started using the B12oil product -- which I think would be roughly when I finally got enough B12. Are you saying that's a symptom of potassium deficiency? So as long as I have those lesions, I should increase my potassium? And/or should I increase methylfolate?

Hi Garyfritz,

I used to have small sort of infected follicles to itchy acne type lesions on my legs (especially where pressure or rubbing fabric, backside, back, scalp mostly. Then after I got methylation etc going all these disappeared except when I had "spoiled" MeCbl injections. It may have been only a small percentage of photolytic breakdown of MeCbl to HyCbl <> AquaCbl (equilibrium reaction) that does. I would suspect a partial methyltrap situation as that can happen on a cell by cell situation. When a cobalamin is absorbed as sublingual, trans-dermal or injected (or equivalent) the actual supplied cobalamin gets into the serum and can be delivered via diffusion to individual cells. If a cell gets delivered a non-MeCbl molecule it appears that a faulty cell reproduction can occur. This is purely a logical and pragmatically determined occurrence and has never been studied. We are on the bleeding edge of understanding right here right now. I can't think of any other hypothetical explanation. I was asked by somebody , maybe you, not long ago if there could be photolytic breakdown of MeCbl in the B12 oil product. I wouldn't think so because it has always been said to occur in an aqueous solution. When I had those kinds of things when injecting, if I stopped using the suspect item and used either a sublingual or a new vial the bumps would always go away in a couple of days and come back when I went to the old vial again. That is a trial you could make for yourself. However, I have also had a very similar response from folic acid, possibly for a similar reason of a folate fail because of unchanged folic acid in the cell instead of methylfolate. The effect is the same as a non-MeCbl cobalamin in the cell. This doesn't happen with HTC2 delivered b12 that I know of because it looses the ligand and then is supposed to gain the correct one as delivered to the cell. It's the non digestive system delivered forms that do this which are delivered with the original ligand. Now another possibility is that the product has mixed isomers (hypothetical) of MeCbl one of which isn't active so instead of widespread fails there are individual cell failures. It could probably occur with just barely enough folinic acid or veggie folates for some people. A lot causes widespread fails including lesions like this where as a barely occurring methylation fail might come down to a cell by cell basis.

Cheers @Freddd, doesn't explain my increase in need for potassium though. Seems this only get more complicated -when it works, it all seems so easy...

Hi SJB944,

Now that might very well be something like that you are seeing, a mixed isomer of MeCbl with enough active MeCbl to cause increased potassium need but enough non-active to cause specific deficiency situation. Or a partial methylation block with folic acid or something.

I suspect that with enough details and some trials that could distinguish amongst the possibilities that your exact thing could be figured out. The deeper one looks the more branches of possibilities one sees.

This whole business is largely because it has never been studied as a system with active components. A complication can be genetic for instance. Rich was good at taking a list of my specific responses and find the enzyme pathway that is blocked forcing my body to take a workaround. In the end he concluded I had 3 rare polymorphisms in combination.

So the catch is, you might have some combination that forces another workaround that affects how these happen. Remember also that Dr Wheatley came to the conclusion that the researched pathway of dealing with inflammation all these years was the forced work around in the body due to not being given AdoCbl and receiving HyCbl instead. So these things have not been well researched because almost all the research is based on forced workarounds with CyCbl, HyCbl and folic acid instead of AdoCbl MeCbl and l-methylfolate that use the evolved pathways. We don't know what these are and have the idea that lifesaving workarounds that don't work as well as the evolved pathways are the main ones. This has turned the understandings upside down.

The way I solved these was to eliminate all the things that can confound the answer, like glutathione and NAC and whey and folic acid and folinc acid and HyCbl and CyCbl and too much B1, B2, B3, inositol and P5P even, at least for me, on some items like forcing the hematocrit too high, etc., until down to evolved pathways and then finds what works for the specific symptoms. I eliminated all white flour, all vitamin containingfcereals and other products, multi products that have either too much of something stacked (ie 5mg of zinc here, 10mg of zinc there, and the intentional amount of zinc giving a buildup that was too much possibly.

I have a new puzzle too, now. Why did my serum copper go down even after I increased my supplement by 15mg and get definite healing for a deficiency. I have some research to do. If anybody knows the answer or has some guesses or logic pathways to share I'd love to hear them.

 

[SJB944]

@Freddd

I guess it can come down to where the copper is. My serum copper levels are low normal, my copper sodase levels low, rbc copper normal, hair analysis copper high. Sorry, I can't help you on this. One wonders how much test matter when you can take copper and see a positive impact?

I've pretty much eliminated all the things you have mentioned, am down to 1/8th of a Nature Made b-complex once a day -- but suspect maybe that is not enough -- too much, that is anything over 1/4 twice a day increases my need for potassium and folate insatiably. I may have to sperate out b1, b2, b3 and take separately, to see what impact, but this hasn't had much impact previously, but then these things do change.

I don't supplement any minerals, apart from selenium, magnesium and potassium, at this stage, mainly due to lots of confusing symptoms previously, but I suspect I should start taking general minerals mix, to cover off some basis.

I've recently tried increasing mb12 to 20mg a day (from 15mg), it increases some intensity of some nerve pains but otherwise not much else, and isn't touching other numbness and nerve like pains, and certainly not shifting me out of this setback. More methyfolate has helped at some level, but isn't hitting the nail on the head. And atm I have potassium under control, but it has regularly dropped low despite no change to anything else.

L-carnitine is not having as much impact, but I will increase -- currently taking 1000mg a day Jarrows liquid -- stomach couldn't handle fumerate.

The other thing is Vitamin D. Had a mixed relationship with it in the past, time to try again -- getting sun doesn't seem to do it. Have some underyling cramping when tighten feet, not attributed to potassium (completely anyway) and only some impact from more magnesium -- could be vitamin D, not helping magnesium.

My symptoms shift and change and the difficulty is often deciding what is relevant, what isn't, had a good run for about 9 months with most setbacks fixed by playing arund with mb12, adb12 (currently 5mg a day) or folate (just incrased to 16mg a day) and potassium (2600mcg a day) - mostly potassium and folate.

Also take vitamin E (away from other things), and Vitamin C.. Was massively sensitive to both SAMe and TMG.

Something is missing, something impacting liver, stomach, digestion, energy, and the right side of my body. Slowly trying to work through the options. Hard part is not getting distracted by other possibilities/theories -- I remind myself what got me this improvement in the first place: the DQ, And go from there.

 

[Freddd]

Something is missing, something impacting liver, stomach, digestion, energy, and the right side of my body. Slowly trying to work through the options. Hard part is not getting distracted by other possibilities/theories -- I remind myself what got me this improvement in the first place: the DQ, And go from there.

L-carnitine is not having as much impact, but I will increase -- currently taking 1000mg a day Jarrows liquid -- stomach couldn't handle fumerate.

Please give details on liver, stomach, digestion, energy and "right side of body". Please give stomach carnitine details.

 

[SJB944]

Carnitine Fumerate:

Re carnitine fumarate, tried a couple of different brands. Irritated stomach, gave me reflux and general acidity. No other benefit, didn’t get it up to a high enough level to see any other difference/benefit. The Jarrow liquid l-carnitine was the first thing that gave me some energy after being on the other 3 of the DQ for a couple of years, doesn’t seem to have as big an impact now, but due to increase – had stopped taking for about a month.

Current right side stuff, liver stomach, digestion:

I have an irritation/tightness in my right side just below and under my right ribs, also some under the sternum, from here this refers into my back around my right ribs and causes a numbness sensation (but not numbness that is unresponsive to pin prick) into my right side of my back, this then goes into my right leg down into my right knee. At times I feel the sensation in my right arm also, my right neck and sometimes face. In that order. All the obvious tests have been done and nothing showing up – including blood tests for liver kidney etc. And brain MRI etc.

With this symptom, my bowels tend to stagnate, causing IBS moving from close to constipation, to loose – with the occasional fermented bowel movement which has in the last few years been a classical folate deficiency symptom for me. At this point increasing folate to 16.8mg per day isn’t helping much so far – some possible impact, but no nail on head.

This right side stuff involving the location of gut, liver, gallbladder, back, is an old symptom that I’ve had for years, maybe 15 or more, but more intermittent with varying degrees of intensity. Since I’ve had the major improvement, last two years, it would come and go but not blow out like this.

Since on DQ last 2 years my IBS was under relative control, and I could even get away with a little gluten here and there plus cheese etc.

My energy has dropped back, I’m still walking but I don’t have that underlying vitality level that I’ve enjoyed over last year. My brain is more confused, more indecisive, uncertain, not depressed (by my standards) but flat, easily overwhelmed – this seems to go with the digestion.

The stagnant bowels, to some extent respond to more potassium, but only at the periphery, again it’s not hitting on the head. I’ve lost weigh also since the symptoms become more prominent. I get some light headedness with this on occasion with the stagnation sensation.

When potassium drops low I get line lie aches in the muscles, shortness of breath, some panicky feeling, heart palpitations.

My overall sense is the DQ isn’t doing what it once was, or something is stopping/or is needed to make it more effective.

Not sure if related, but I’ve had an increase in tingling in hands/feet/mouth and lips – this is impacted to some extent from taking more mB12 – more intense. My nerve pains seem to be more intermittent in nature (than how you’ve described yours), hard to get a clear sense on what makes them come and go, what is healing and what is making them worse – things that seem to have an impact, making them worse include b-complex – which as I mentioned I take a very small amount of.

All this right side stuff could mean I need to address gut with probiotics etc, but prior to DQ I did numerous styles of interventions on this front to no avail – there is a pattern hear telling me something, but just what remains to be seen at this stage.

Other possible relevant symptoms:

Dry hands and crack skin on finger tips (not around nails). Not POTS but certainly more likely to get slightly light headed when shifting quickly from lying to standing (during light yoga). Gut pretty sulphury wind from potassium gluconate. Twitching in eyes first thing in morning, very slight but noticeable. Infected ache feeling in muscles gut first thing in morning.

Muscles are generally much more inclined to bite and cramp when tighten – back to old symptoms.

In terms of physical exercise, since on the DQ I have built up to walking 3klms a day at an average pace. If I ever try and push hard, or faster, then all hell breaks loose, potassium will drop out, lactic acid will build up and take some time to work through system. ATM been able to keep up the walk, but it is more taxing.

 

[Freddd]

@SJB944, see this thread for more than you ever wanted to know about the oil products.

The main guy who developed the oils says the 3:1 ad:me ratio is "the proportion found in the body" and what they've found to work well for many people with CFS/ME. It works very well for me.

Hi Garyfritz,

I would like to describe some tests I made. AdoCbl can cause the same methyltrap that any non-MeCbl can , ie acne type lesions. I find that AdoCbl for me is best taken once per week. Taking with MeCbl above 1:1 was an ineffective ratio, cutting down on MeCbl effectiveness. It would appear when the cobalamin is in the serum being distributed by diffusion, that the wrong kind of B12 can be taken up in the cell and not be effective for methylation. AdoCbl for the most part finds a parking space with an approximately 1% turnover rate (estimated). I have no perceivable response taking it once a week with 1 or more 10 mg caps done sublingually. Approximately 95-98% of all circulating MeCbl is lost each day, same with circulating AdoCbl etc but NOT AdoCbl that is in mitochondria. My daughter did indeed need daily AdoCbl for unknown reasons. I find larger doses once a week get it into the brain and everywhere needed by the body quite adequately.

Have you tried a once a week usage of AdoCbl?.

 

[garyfritz]

Hm. A year ago I found I didn't feel well on 100% methyl. I switched to the ado/me oil and felt much better, and have continued to do well. But I have some methyl-only oil, so I could experiment with less-frequent ado/me doses. I'll start by backing off to 1 ado/me + 2 methyl per day. Thanks for the pointer, @Freddd.

I also have some hydroxy oil that Greg gave me to experiment with, but I haven't tried it yet. I'm not sure what benefit (if any) hydroxocobalamin would offer over methyl or adenosyl. Wikipedia says it is retained longer in the body than cyanoB12, but no comparison to me/ado.

 

[Freddd]

I also have some hydroxy oil that Greg gave me to experiment with, but I haven't tried it yet. I'm not sure what benefit (if any) hydroxocobalamin would offer over methyl or adenosyl. Wikipedia says it is retained longer in the body than cyanoB12, but no comparison to me/ado.

Hi Garyfritz,

Yes, HyCbl does last sightly longer than CyCbl as it is not a preferred excretion cobalamin like CyCbl and glutathionylcobalamin. And HyCbl works a little better at being salvaged (recycled). The SERUM level of all of them by injection are much closer to being the same than different for the first two days at the end of which 98-99% are gone. However, as most of B12 in a body is AdoCbl, half of that as working AdoCbl in the liver at the base of the activity of the liver. Most of the resat is in other organs and the muscles and brain. The turnover rate of that AdoCbl is perhaps 1% a day. The problem with CyCbl, HyCbl, Glutathionylcobalamin or as comes to a surprise is that when injected or absorbed through epithelial tissues, it can go into serum without change and appears, from my experience and that of many others, that too much of any of those in excess of some relatively low concentration appears to form methyltrap on a cellular basis. How much all this depends upon our specific polymorphisms, I don't know. I do know that over 50% genetically have some folate problems, and all folate problems make for B12 problems as well.

MeCbl is far better utilized and raises the serum level higher than equivalent HyCbl injections. However, at the end of 3 days that may amount to 10 mcg difference retained. There is no storage per se of MeCbl or HyCbl or CyCbl or even AdoCbl. To release AdoCbl from the so-called "stores" requires the destruction of the mitochondria or cell death. The biggest difference is how many transactions MeCbl makes compared to HyCbl and CyCbl. These have to be recycled before their first use, and the biological limit of the body looks to be on the order of 10-40 mcg that can actually be recycled. However, as MeCbl is 100% usable, say 1000mcg is available for transactions immediately and then the 10-40 mcg can be recycled after first use or 2nd use or 3rd use. MeCbl in an unsupplemented body is the "main circulating form". CyCbl, HyCbl and AdoCbl if to me converted to MeCbl is a methyl competitor. That conversion is dependent upon MeCbl, AdoCbl, L-methylfolate and l-carnitine (all 4 of the deadlock quartet) being present and not deadlocked since both an enzyme and ATP are required for the conversions and for that the methylation has to be working enough. They are not self booting as such.

Carmen Wheatley in the "GORILLA IN THE ROOM" paper, she describes how HyCbl's effect on inflammation is a partial workaround whereas the AdoCbl pathway appears to be the desirable complete pathway.

 

[SJB944]

Carnitine Fumerate:

Re carnitine fumarate, tried a couple of different brands. Irritated stomach, gave me reflux and general acidity. No other benefit, didn’t get it up to a high enough level to see any other difference/benefit. The Jarrow liquid l-carnitine was the first thing that gave me some energy after being on the other 3 of the DQ for a couple of years, doesn’t seem to have as big an impact now, but due to increase – had stopped taking for about a month.

Current right side stuff, liver stomach, digestion:

I have an irritation/tightness in my right side just below and under my right ribs, also some under the sternum, from here this refers into my back around my right ribs and causes a numbness sensation (but not numbness that is unresponsive to pin prick) into my right side of my back, this then goes into my right leg down into my right knee. At times I feel the sensation in my right arm also, my right neck and sometimes face. In that order. All the obvious tests have been done and nothing showing up – including blood tests for liver kidney etc. And brain MRI etc.

With this symptom, my bowels tend to stagnate, causing IBS moving from close to constipation, to loose – with the occasional fermented bowel movement which has in the last few years been a classical folate deficiency symptom for me. At this point increasing folate to 16.8mg per day isn’t helping much so far – some possible impact, but no nail on head.

This right side stuff involving the location of gut, liver, gallbladder, back, is an old symptom that I’ve had for years, maybe 15 or more, but more intermittent with varying degrees of intensity. Since I’ve had the major improvement, last two years, it would come and go but not blow out like this.

Since on DQ last 2 years my IBS was under relative control, and I could even get away with a little gluten here and there plus cheese etc.

My energy has dropped back, I’m still walking but I don’t have that underlying vitality level that I’ve enjoyed over last year. My brain is more confused, more indecisive, uncertain, not depressed (by my standards) but flat, easily overwhelmed – this seems to go with the digestion.

The stagnant bowels, to some extent respond to more potassium, but only at the periphery, again it’s not hitting on the head. I’ve lost weigh also since the symptoms become more prominent. I get some light headedness with this on occasion with the stagnation sensation.

When potassium drops low I get line lie aches in the muscles, shortness of breath, some panicky feeling, heart palpitations.

My overall sense is the DQ isn’t doing what it once was, or something is stopping/or is needed to make it more effective.

Not sure if related, but I’ve had an increase in tingling in hands/feet/mouth and lips – this is impacted to some extent from taking more mB12 – more intense. My nerve pains seem to be more intermittent in nature (than how you’ve described yours), hard to get a clear sense on what makes them come and go, what is healing and what is making them worse – things that seem to have an impact, making them worse include b-complex – which as I mentioned I take a very small amount of.

All this right side stuff could mean I need to address gut with probiotics etc, but prior to DQ I did numerous styles of interventions on this front to no avail – there is a pattern hear telling me something, but just what remains to be seen at this stage.

Other possible relevant symptoms:

Dry hands and crack skin on finger tips (not around nails). Not POTS but certainly more likely to get slightly light headed when shifting quickly from lying to standing (during light yoga). Gut pretty sulphury wind from potassium gluconate. Twitching in eyes first thing in morning, very slight but noticeable. Infected ache feeling in muscles gut first thing in morning.

Muscles are generally much more inclined to bite and cramp when tighten – back to old symptoms.

In terms of physical exercise, since on the DQ I have built up to walking 3klms a day at an average pace. If I ever try and push hard, or faster, then all hell breaks loose, potassium will drop out, lactic acid will build up and take some time to work through system. ATM been able to keep up the walk, but it is more taxing.

Anything jump out at you here @Freddd?

 

[Freddd]

@SJB944 ,

This is where it gets very inexact. The refeeding literature points very clearly at trace minerals as a whole. I haven't talked with 100 people who all have had copper deficiency symptoms as part of refeeding so the patterns are not real clear. This is very much on the bleeding edge. Do you have some spider veins? Varicosities? Gum disease, connective tissue problems?

Taking copper pushed my potassium need another 400mgs. It did up a lot of missing methylation. The other 3 pushed it up another 200+mgs. The joys of very fuzzy data and logic.

The right sided business seems weird, I don't see how it is related to nutrients. It does sound like liver or gall bladder or something like that (speculation). The gut sounds like paralysis as often caused by low potassium. Have you had your potassium checked, have you tried getting up to 2500mg a day or so?

The "crack skin on finger tips " sounds like folate deficiency. BUT, here is the thing, copper and the other trace minerals did that to me too. It cuts certain little pieces out of the methylation, so some partial methylation problems even if generally running well. Why not just go to 30mg of folate for a trial. If it helps you will know it. If it has no effect it seems most likely to be copper, and/or manganese, and/or boron and/or molybdenum. I had some similar effects. Also they can affect neurological problems in a strange way, very partial. My copper was above the low limit and dropped below after starting the supplementation similar to paradoxical folate deficiency symptoms. But those cracks in the fingertips remind me specifically of copper and are all almost healed up now.

All in all, I started copper, very successfully on slightly less but similar effects. I could feel the difference slightly in 4 hours, and was certain in another 12 hours. IN a while I cpould see the other effects. I started at 5mg (2.5 morning and evening) and am up to 10mg x 2 each day now and up to 15 I cpould feel the difference. My spider veins are reduced about 75% now, very visibly changed. My fingertips are better. That was peculiar because all the things that usually came with the fingertips was not present.

A trial could tell you a lot. I would be inclined to start all 4 and do the copper at say 10mgs per day for starters, and the other 3 at one tablet each. These do not take effect as fast as folate and mecbl but the turnaround was clearly senses by me. I FELT better in a day, a lot better. I suspect that those items could make a noticvable change. None of them are risky amounts in any way. Much of the work has been on toxic levels and are speaking of 10 to 100 times as much as what I am taking. The effective amounts are not really well known but the guidance I am using is case history studies of people needing them corrected. And those tend to use chelated forms, and the UK studies where the copper was not available as a pharmaceutical was using the Solgar copper chelate.

I'll tell you what I am using, 8mg of Chelated Manganese from Solgar, Multi Chelated Boron from Solgar 3mg, Country Life 150 mcg chelated molybdenum, and 2.5mg Chelated Copper from Solgar x4 in am and x4 in evening. That is titrated by effect and increased because of the serum drop after it got started being used.

With all that good luck, that is about the best I can come up with. We are on just being explored ground. Keep track of what is influenced. That will help you at the re-evaluation and everybody going through this stuff. Good luck. This is what I have been doing the last 12 years.

 

[Johnycomelately]

Concerning refeeding I was wondering if anyone has a clue about these symptoms.

I (and two other people) recently started Freddd's protocol but I am using intranasal methyl b12, basically Doctor's Best capsules put through a 0.22 micron syringe filter to remove bacteria and applied via a syringe nasal spray. I am using reverse osmosis bacterial free water as the carrier.

I had the most incredible pain I have ever experienced in my life in my sinus to the point of passing out (I have previously broken bones, fractured my skull and had previously had sinus infections but nothing compared to this pain). I'm on my second round of antibiotics and was actually tested for Meningitis.

I have vitiligo and a low white blood cell count, my research shows that neutropenia is a condition that arises from folate deficiency causing low neutrophils (white blood cells) and infections arising as a result.

Has anyone experienced infections while on Freddd's protocol? Is it possible acute neutropenia and infection can result from folate deficiency. I have taken 15 methyl folate 800mg on my second sound of pain and felt a lot better. What are the upper limits of methyl folate people have taken?

Has anyone experienced similar acute symptoms?


Thanks for your consideration, this is my first post and after my recent experience I am just trying to narrow down the cause.

 

[SJB944]

@Freddd Thanks for that. I'm with you on the liver/gallbladder, but it could be nutrient related - liver needs those trace minerals, but why all of a sudden. It's a very particular pattern and so familiar, but had abated this last year or so, or settled into the background. It seems like the DQ covers a multitude of sins...

Have had potassium up to over 3500mg at times, particularly when increasing b-complex. Now settled down to about 2250mg, but I get the feeling potassium sin't being absorbed or entering the cell like it was -- something is missing, something has changed.

Will play with the high dosage of Methylfolate.

In regard to trace minerals, I'm inclined to start with a product I have from Dr Myhill which covers a whole range of trace minerals, including the ones you mentioned and then going from there -- go general then nail down the specific. It has its own logic for ratios, worth a shot, and I have it on hand. Plus I'm having no minerals part from magnesium, potassium and selenium.

Sometimes with the DQ I feel like I have a hammer and everything is looking like a nail...
I was so hypersensitive to l-carnitine to begin with, and now I can't really notice it's impact -- still on the liquid and taking about 1600mg a day. Time to try the Fumerate again, I guess.

Thanks again.