REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Freddd]

@Freddd - I'm curious as to what type/dosaging of copper supplement you are using.

I choose to use the brand used in a treatment trial set of case histories. It was a UK study and there were no "pharmaceutical" copper tablets available so they used the Solgar Copper amino acid Chelate.

http://www.iherb.com/Solgar-Chelated-Copper-100-Tablets/41330/?rcode=RED843

These are 2.5mg each. In the studies they titrated to effective doses with the highest being 20mg a day. There are no quantity warnings for 20mg but the high safe limit isn't known, though generally people who have excess copper problems are usually caused by accidental water (soft acid water with copper pipes can do it, corroded rather than hardwater lime) and other contamination with very sizable doses. Zinc with doses of 200-300mg daiuly were known to cause copper deficiency both by competition blockage during absorption and in the body. The LOWEST amount of zinc with the possibility of contributing to copper deficiency was about 50mg. None below 200mg were confirmed as problem.

I started with 5mg/day and was aware of a lessening rate of misery increase. By 10mg daily their was no increase and after a couple of weeks sleep disorder and some other things were diminished. I have held at 15mg a day and there has been some slow improvement. The study commented on the slowness of those recoveries. It isn't fast like MeCbl/mfolate, feeling improvement daily. And the people in the study were not taking active b12/folate, at lweast not as part of the study. People taking large doses of zinc needed to cut their zinc dose down. My zinc had crept up with various combination pills to 85mg. I cut back to 35-40mg daily. I'm about 2 months into copper usage now, somewhat improved and not getting worse. Many of the smaller spider veins have disappeared or reduced considerably. The dentist can see differences in my lower gums but whether or not that will stop or reverse gum damage is still too soon to tell. I would imagine I will know more in a year.

I'm taking 7.5mg twice a day with food. It doesn't seen to upset my stomach. I'm sure results will vary, good luck.

 

[Freddd]

@Freddd, your description of adult-onset CblC is very interesting to me. I've been trying to understand why my B12 needs suddenly skyrocketed, and I wonder if that's what's going on. I had minor symptoms (occasional RLS, etc) for many years, but at about age 55 things got worse very suddenly. I stumbled onto B12 almost by accident, and by great luck I tried methyl B12. Over the last several years I've settled in on methyl B12, adenosyl B12, and folate as the key nutrients I need. Never got any results from LCF but maybe I should try ALCAR. My homocysteine levels are at the high end of the range.

I don't have full ME, thank God -- at least not yet. My symptoms seem to be more like acute B12 deficiency. Like you, I need large amounts of B12, currently 1.5mg mB12 and 4.5mg adB12 daily, injected equivalent.

I don't know about the copper. I show many symptoms (borderline low testosterone, low body temp, high cholesterol, kinky hair, hair loss (but at age 60 it may just be normal male-pattern baldness), etc. I had a recent hair-metal test that showed normal Cu levels, but who knows if I'm using it right. On my doctor's advice I'm taking Zinc, which can interfere with Cu absorption.

Hi Garyfritz,

That adult onset trigger is unknown. For some reason something kicks off a series of problems that get worse and worse, more symptoms, over time. My own experience started with childhood symptoms of what looks like low folate, my vegetable folate problem. When Special K (first vitamin cereal) came on market I got switched to that, with folic acid and CyCbl. In about a 2 year period I developed IBS, permanent angular cheilitis, peeling finger tips and I went from missing 1/6 of the school year for illness to loosing 1/3 of the school year. These were all basically low B12 and low folate, partial methylation block, problems. I was injured at 24. Within a few years all sorts of additional problems with multiple neuromuscular pains started and I had full blown FMS. By 30 my neck was always in terrible pain and had reverse curvature from muscle contractions. A in 1987, a few months before my 40th birthday I woke up one morning terribly sick and in massive pain, dizzy and unable to walk and so on. I woke up with methyltrap and ATP block. The number of my symptoms doubled that year. I stayed sick, with ups and downs, but more downs than ups until I tried a 5 star MeCbl on May 21st, 2003 at 6:05 pm and in 5 minutes I knew it was changing my life and in an hour a lifelong depression was lifting.

I had a large effect from increasing my zinc from 15mg/day to 65mg. That made quite a difference oin the early years of MeCbl etc. I had been taking zinc for decades to no effect. After adding MeCbl, AdoCbl and L-methylfolate, suddenly the zinc made a huge difference.

On the homocysteine, p5p might make a difference. If methylation was working well Hcy should be normal or lower. For me SAM-e really kicked off more methylation. The methylfolate was hard to come by at first and at fist I started at 400mcg just to be able to have some. I'm up to 28,800 mcg of Metafolin now and have no IBS, edema, cheilitis, etc. I have a very slight periodic change that is perhaps 1% what it was 7 years ago. All my blatant folate deficiency symptoms are gone and staying gone. The copper deficiency stopping of methylation was selective and a different set of changes.

Now for what I learned today on the copper deficiency induced gums that has reversed in 2 months so far. My gums prior to the copper were inflamed without infection and cyanotic in color. In 2 months my gums have a much more normal look and have healed far better than both the oral surgeon and my dedntist would have anticipated, now that I am taking the copper. My dental hygiene was good and done according to directions and in my regular exams I had mostly 2 or 3 mm on the periodontal probing. My CRP was < 1.0 and has been since starting significant folate.

 

[dannybex]

Regarding refeeding syndrome: Thiamine can become quickly depleted, something discovered after WW2, but documented in quite a few studies and letters:

"Starvation will usually result in several vitamin deficiencies. The most important of these with respect to refeeding is thiamine, as it is an essential coenzyme in carbohydrate metabolism."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/

http://www.nature.com/ejcn/journal/v62/n6/full/1602854a.html

http://www.hindawi.com/journals/crim/2014/605707/

http://www.nutritionjrnl.com/article/S0899-9007(14)00124-5/abstract

http://www.bmj.com/rapid-response/2011/10/30/refeeding-syndrome-dont-forget-thiamine-deficiency

It's also very important when there's no appetite.

 

[Mary]

@dannybex - I've been trying to add in extra thiamine for several weeks now with somewhat bewildering results. When I first started taking it, my energy picked up a lot - it was fabulous - for a day or two, and then I got edgy and wired but not really more energetic, and then tired and achy. I was taking about 30 mg. B1. (I started taking thiamine when I read that thiamine deficiency is linked to lactic acidosis - not the same as PEM but I bet there is a connection)

Then I came across freddd's post on refeeding and did a little extra reading - and saw the same thing about thiamine you posted, but what really struck me was this:

"The hallmark feature [of refeeding syndrome] is hypophosphataemia, however other biochemical abnormalities are common including disorder of sodium and fluid balance, changes in glucose, protein and fat metabolism, thiamine deficiency, hypokalaemia and hypomagnesaemia" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/

So I began to wonder if the thiamine was causing low phosphate/phosphorus via refeeding syndrome - because I reacted so strongly to the thiamine and initially it boosted my energy so much and thus I seemed to need it so much - and then I looked at blood work I had done just last September and found that my alkaline phosphatase was low - 30, out of a range of 33 - 130. And this is supposed to be rather rare, and one of the causes is low phosphorus. (but also hypothyroidism, low B6, low folate, which we all seem to have!) One other cause of low alkaline phosphatase is malapsorption and my gut has been rather messed up for awhile but kefir is helping and I just started aloe vera and also curcumin, and it's getting better.

Anyways, after reading about hypophosphataemia, I read about increasing phosphorus and found that yogurt is one of the best sources, and a few other things. You can't just buy a phosphorus supplement, I guess it can be dangerous. So I've been drinking a lot of kefir and bought sunflower seeds and just got some pumpkin seeds. I really really want to be able to take thiamine, but was quite achy and tired for several days and almost ready to give up and then finally last night the achiness and extra fatigue started to go away and I'm theorizing that perhaps my phosphorus levels are going up. I do feel better today.

This is all guesswork but it really makes me wonder if at least some of the extreme reactions so many people have to methylation supplements and B vitamins in general might be due to hypophosphataemia, as well as low potassium. (I've experienced low potassium many times and now am able to stay on top of it for the most part)

Also - phosphorus/phosphate is essential for production of ATP ..... I wish I had my own lab and could run blood work as needed to find out what the heck is going on!.

 

[Freddd]

@dannybex - I've been trying to add in extra thiamine for several weeks now with somewhat bewildering results. When I first started taking it, my energy picked up a lot - it was fabulous - for a day or two, and then I got edgy and wired but not really more energetic, and then tired and achy. I was taking about 30 mg. B1. (I started taking thiamine when I read that thiamine deficiency is linked to lactic acidosis - not the same as PEM but I bet there is a connection)

Then I came across freddd's post on refeeding and did a little extra reading - and saw the same thing about thiamine you posted, but what really struck me was this:

"The hallmark feature [of refeeding syndrome] is hypophosphataemia, however other biochemical abnormalities are common including disorder of sodium and fluid balance, changes in glucose, protein and fat metabolism, thiamine deficiency, hypokalaemia and hypomagnesaemia" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/

So I began to wonder if the thiamine was causing low phosphate/phosphorus via refeeding syndrome - because I reacted so strongly to the thiamine and initially it boosted my energy so much and thus I seemed to need it so much - and then I looked at blood work I had done just last September and found that my alkaline phosphatase was low - 30, out of a range of 33 - 130. And this is supposed to be rather rare, and one of the causes is low phosphorus. (but also hypothyroidism, low B6, low folate, which we all seem to have!) One other cause of low alkaline phosphatase is malapsorption and my gut has been rather messed up for awhile but kefir is helping and I just started aloe vera and also curcumin, and it's getting better.

Anyways, after reading about hypophosphataemia, I read about increasing phosphorus and found that yogurt is one of the best sources, and a few other things. You can't just buy a phosphorus supplement, I guess it can be dangerous. So I've been drinking a lot of kefir and bought sunflower seeds and just got some pumpkin seeds. I really really want to be able to take thiamine, but was quite achy and tired for several days and almost ready to give up and then finally last night the achiness and extra fatigue started to go away and I'm theorizing that perhaps my phosphorus levels are going up. I do feel better today.

This is all guesswork but it really makes me wonder if at least some of the extreme reactions so many people have to methylation supplements and B vitamins in general might be due to hypophosphataemia, as well as low potassium. (I've experienced low potassium many times and now am able to stay on top of it for the most part)

Also - phosphorus/phosphate is essential for production of ATP ..... I wish I had my own lab and could run blood work as needed to find out what the heck is going on!.

Hi Susan and Dan,

Phosphatidylcholine, Phosphatidylserine and bonemeal, among some other supplements contain organically useful phosphorus in various forms. Lecithin contains Phosphatidylcholine.


Refeeding syndrome can be very frustrating as healing can stop perhaps 100 different times if a person doesn't start with a lot of basics, like b-complex, trace minerals and so forth. Even with those, for instance, 1.5mg of copper in the multi mineral I take just wasn't enough. That's why all the clues from people and what symptoms they immediately change are very handy to know.

 

[Mary]

FWIW, my energy started to pick up last night and is markedly better today - I feel better than I have in weeks, since I first started the B1 - I feel almost as good as I did several weeks ago, and that was very good.

I've been drinking kefir faithfully, eating sunflower seeds, pumpkin seeds. It could be I'm getting phosphorus levels back up, though it's all a guessing game. Also, my gut is a lot better, it seems from the kefir and aloe vera and turmeric (which I add to the kefir and V8 (not all together!)

One more thing - when I first started the B1, my energy picked up a lot quickly, but so did my blood pressure - it's usually 122/70, something like that, and it got up close to 150/ over whatever. I could feel it. And this time around it's only going up a little. I think perhaps phosphorus helps regulate BP as well as potassium and other electrolytes, and am guessing that low phosphorus induced by the B1 caused my BP to go up.

Will see how long this lasts ---

 

[Freddd]

Part of the problem is that 100 variable problems are difficult to unravel, to understand. What I have learned is that the symptoms tend to reflect mostly what is the actual thing stopping several reactions from completion. We have all seen one set of symptoms disappear or vastly improve very quickly and then suddenly a different set of symptoms pops up saying "fix me" sort of. With my copper deficiency, there were a few subtle symptoms with the rest masked by folate deficiency symptoms. When I got rid of all the regular folate symptoms, what remained was a weird set of partial methylation block symptoms that turned out to be copper deficiency. Now the copper deficiency symptoms are fading, slowly but noticeably, and once again I need to recognize what isn't getting better or what new "old symptoms" pops up. Understanding it as "refeeding syndrome" gives it an organization that points right at the symptoms that have to be fixed next.. There might be a critical item of which one has a technical deficiency yet it had no symptoms because all those same thginmgs break on something else. If you look on the LEVELS OF METHYLATION AND HEALING POST there is a list of symptoms by nutrients in the order I started the nutrients and what was affected.

To say it differently, the L-carnitine fumarate didn't do anything until after the MeCbl, AdoCbl and l-methylfolate deficiencies were fixed then suddenly LCF had a huge effect, and increased again the need for potassium. Then suddenly more zinc made a difference. And after AdoCbl and LCF were in place then D-ribose made it's difference then.

 

[dannybex]

@dannybex - I've been trying to add in extra thiamine for several weeks now with somewhat bewildering results. When I first started taking it, my energy picked up a lot - it was fabulous - for a day or two, and then I got edgy and wired but not really more energetic, and then tired and achy. I was taking about 30 mg. B1. (I started taking thiamine when I read that thiamine deficiency is linked to lactic acidosis - not the same as PEM but I bet there is a connection)

I've never heard of thiamine making anyone wired or edgy, in fact it typically causes relaxation, perhaps due to lowered lactic acidosis among other things. Having said that, I can't say that it wouldn't cause those symptoms.

Then I came across freddd's post on refeeding and did a little extra reading - and saw the same thing about thiamine you posted, but what really struck me was this:

"[B][I]The hallmark feature [[/I]of refeeding syndrome] [I]is hypophosphataemia[/I],[/B] however other biochemical abnormalities are common including disorder of sodium and fluid balance, changes in glucose, protein and fat metabolism, thiamine deficiency, hypokalaemia and hypomagnesaemia" [url]http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/[/url]

So I began to wonder if the thiamine was causing low phosphate/phosphorus via refeeding syndrome - because I reacted so strongly to the thiamine and initially it boosted my energy so much and thus I seemed to need it so much - and then I looked at blood work I had done just last September and found that my alkaline phosphatase was low - 30, out of a range of 33 - 130. And this is supposed to be rather rare, and one of the causes is low phosphorus. (but also hypothyroidism, low B6, low folate, which we all seem to have!) One other cause of low alkaline phosphatase is malapsorption and my gut has been rather messed up for awhile but kefir is helping and I just started aloe vera and also curcumin, and it's getting better.

Anyways, after reading about hypophosphataemia, I read about increasing phosphorus and found that yogurt is one of the best sources, and a few other things. You can't just buy a phosphorus supplement, I guess it can be dangerous. So I've been drinking a lot of kefir and bought sunflower seeds and just got some pumpkin seeds. I really really want to be able to take thiamine, but was quite achy and tired for several days and almost ready to give up and then finally last night the achiness and extra fatigue started to go away and I'm theorizing that perhaps my phosphorus levels are going up. I do feel better today.

This is all guesswork but it really makes me wonder if at least some of the extreme reactions so many people have to methylation supplements and B vitamins in general might be due to hypophosphataemia, as well as low potassium. (I've experienced low potassium many times and now am able to stay on top of it for the most part)

Also - phosphorus/phosphate is essential for production of ATP ..... I wish I had my own lab and could run blood work as needed to find out what the heck is going on!.

There are so many factors involved that if thiamine was the only thing you added before you had a change in symptoms, then you could point to that as 'the cause'. But if you added or changed things diet-wise around the same time, then that throws a wrench into the whole thing. For example, kefir is extremely high in histamine, which could cause increased anxiety and wired-but-tired symptoms.

I don't know much at all about hypophosphatemia, but a quick search turned up several different ranges for what's considered 'normal', with one starting at 20 and going to 140, so there's a chance you could be 'low-normal'. ???

I noticed on the wikipedia page that hypophosphatemia may also be connected to elevated serum [COLOR=#000000][URL='https://en.wikipedia.org/wiki/Alkaline_phosphatase']alkaline phosphatase[/URL]. So am not sure if your lower level is related or not.

As you say, [B]this is all guesswork[/B]. Good luck getting to the bottom of it. [/COLOR]

Edit: I was obviously typing this while Mary was typing her update, so take it for what it's (barely) worth. And I have no idea why some of this type is BLUE. :)

 

[dannybex]

Part of the problem is that 100 variable problems are difficult to unravel, to understand.

Yup. The understatement of the decade.

To say it differently, the L-carnitine fumarate didn't do anything until after the MeCbl, AdoCbl and l-methylfolate deficiencies were fixed then suddenly LCF had a huge effect, and increased again the need for potassium. Then suddenly more zinc made a difference. And after AdoCbl and LCF were in place then D-ribose made it's difference then.

And I know a woman who found that acetyl-l-carnitine helped her gain weight (she was down to 65lbs) while the fumarate didn't. So what works for one won't work for another. Very complex and complicated.

 

[Mary]

@dannybex - you somehow created a hyperlink with your text - very creative!

I just wanted to say thiamine was the only variable when (a) first my energy picked up a lot for about 2 days almost immediately after starting it, and (b) then I got wired and edgy (no other variables) and then (c) achy and tired for many days after that. And also my BP went up after starting the B-1.

I'm not saying the thiamine per se caused the fatigue and edginess, but rather am hypothesizing that depleted phosphorus induced by the thiamine (re-feeding) caused these symptoms.

I only started the kefir after reading about low phosphorus and re-feeding - how hypophosphotatemia is the hallmark of re-feeding, and then read that one of the best sources of phosphorus is yogurt, so I figured kefir would work just as well, if not better. And fatigue is a key symptom of low phosphorus.

And today miraculously (!) my energy has picked up again .....

 

[Freddd]

Yup. The understatement of the decade.



And I know a woman who found that acetyl-l-carnitine helped her gain weight (she was down to 65lbs) while the fumarate didn't. So what works for one won't work for another. Very complex and complicated.

Oh yes! And why one OR the other carnitine works well, and the LCF helped me put on 50 pounds of muscle after loosing 45 pounds of water and losing 40-50 pounds of fat at the same time. I would guess that there are genetic differences of some sort that makes one kind of carnitine a vitamin for some people, they can't synthesize it in a normal way.

 

[telochian]

@dannybex - you somehow created a hyperlink with your text - very creative!

I just wanted to say thiamine was the only variable when (a) first my energy picked up a lot for about 2 days almost immediately after starting it, and (b) then I got wired and edgy (no other variables) and then (c) achy and tired for many days after that. And also my BP went up after starting the B-1.

I'm not saying the thiamine per se caused the fatigue and edginess, but rather am hypothesizing that depleted phosphorus induced by the thiamine (re-feeding) caused these symptoms.

I only started the kefir after reading about low phosphorus and re-feeding - how hypophosphotatemia is the hallmark of re-feeding, and then read that one of the best sources of phosphorus is yogurt, so I figured kefir would work just as well, if not better. And fatigue is a key symptom of low phosphorus.

And today miraculously (!) my energy has picked up again .....

Great find!!!

This is critical to my progress at the moment. I feel amazing, when adding b1 and b2 to my usual deadlock quartet, until a few days later and then hypokalemia kicks in and is almost insatiable. Ever since my original experiment with adding b1 and b2 (very large amounts) I haven't been able to get my potassium/electrolytes balanced, I have had constant sock in glove neuropathy and elevated heart rates/hypokalemia. As a sucker for punishment, I ground up a b1 and b2 tablet and took a fraction of it today to see what happened, viola......perfect feet and hands, no more numbness.

I'm going to start smashing tubs of yoghurt (I killed my kefir long ago) and might finally crack that bottle of
Phosphatidylcholine, cheers @Freddd for the heads up on the phosphorus sources. I'm very interested to hear further updates/theories on this and from anyone else that knows good sources of phosphorus.

 

[Mary]

Hi @telochian - we are do-it-yourself lab experiments! Interesting - I can't tolerate extra B2, but my body seems to love B1. Re hypokalemia - that has been a major issue for me so in addition to taking about 1000 mg. of potassium gluconate in divided doses daily, I also drink a glass of low-sodium V8 daily - it has 900 mg. potassium, so I seem to stay on top of potassium issues this way.

I did crash yesterday after feeling so good the day before ...... well, what can I say - not much - will keep on working on this -- I hope the yogurt etc. helps you! And definitely cheers to @Freddd for alerting us to re-feeding issues!

 

[garyfritz]

@telochian, what were your "very large amounts" of b1/b2? I tried as much as 100mg/day and I didn't notice any change at all. (I don't notice change from much of ANYthing, except B12!)

 

[Freddd]

There are items that allow things happen, there are items that make things happen and there are items that prevent things from happening. So far I have found top of effectiveness characteristics in B1, B2, B3 and inoistol. Basically for me they increased the need for methylfolate and potassium to insatiable levels and caused or allowed certain specific combinations of folate deficiency symptoms to come back. They were insatiable in that with the potassium it hit my limit of stomach tolerance. With Metafolin there is a limit of financial tolerance at the very least. After removing folic acid, folinic acid and excessive vegetable folates I got a whole lot more effect from the same dose of folate.

P5P at 50mg in addition to the b6 in the b-complex caused my hematocrit to go up too high into a problem causing range, mid 50s. Stopping the p5p dropped it back to 47 and appears to be continuing down. It appears that P5P drives the hematocrit but it appears that B6 doesn't, at least in the same way.

Copper, which I've been on for a couple of months now since the deficiency was recognized, has allowed my own testosterone level rise 300ng/ml, which is really kind of large and entirely unexpected. It is one of the things sometimes affected by the deadlock quartet. Sometimes that restores hormones and libido and such and sometimes it doesn't. Copper looks like it could be connected to that and limiting it. I'm down titrating testosterone now as I have done with 10 or so medications previously. Regular testing is needed for testosterone.

As Rich would remind people, regular testing can be helpful but don't rely on the "in range" numbers actually be effective. If folate and b12 are "in range" but your MCV is 102, your platelet count is low and a bunch of other effects are "wrong" a person still has a problem.

I walked into my internists office about 8 years ago. I had been healing for 4 years at that point. He looked at his notes and said "Looks like your MCV is finally taken care of, congratulations." We looked at the number and it was the same 99.8 it had been for decades. The difference was that the lab had changed the ranges and instead of alerting 99.8 now it was "normal" up to 100 or even 102 at some labs. My remark "Now there is a con job. They fooled us." Having worked in group health for decades I just called the lab and identified myself as a consultant with a nationally recognized consulting group (a big one) and asked them what gives. They routed the call to the appropriate person. I asked if the hematological standards had changed he said "no". It turned out to be a combination of statistics and pragmatism. What I was told that "People's results had changed so that in two steps over 10 years they had redefined the range. First alert went from > 93 to > 96, then to >100 (102 for some areas). He said that if they alerted below 100 (102 in some areas) there were a majority of results going back with alerts that the docs would just ignore them and that serves nobody. As a consultant to plan management, I do agree that if the range has real meaning it serves nobody to ignore it. It took me till NOW, and 28.8 mg of Metafolin maintained without methylation breaking each 2 weeks for 5 days or so for it to come down, so far to 95.x for the first time in my life.

I used to be asked if I had bleeding problems because of platelet count. My platelet count has normalized, a nice mid range number. I no longer have all the results sitting on the edge of trouble and no longer get docs insisting that I must be a secret alcoholic (screwed up blood measures from multiple nutritional deficiencies). I got kicked out of practices for refusing to admit being an alcoholic at a time when I couldn't tolerate alcohol. In the consulting group we helped in getting docs on the closed panels and also off of them. After total failures for decades with more than 100 doctors as total failures in treating my real problems I started researching and interviewing docs for my panel of 1 before letting them treat me. I had my "every day" doc for antibiotics and routine care with whom I did not discuss forbidden subjects like treating severe chronic pain or my hundreds of symptoms. Then I was looking for a doctor who could solve any of my other problems. I saw mercury docs, and many others. I spent $200,000 out of pocket on tests and treatments with zero help and a lot of lousy side effects. Every one of the docs regardless of what their theories were failed in providing any effective treatment. They all said "looks like b12 deficiency" at literal first glance but afdter tests they all said impossible, your b12 and folate are fine despite all the screwed up blood tests with changes described in b12 and folate deficiency literature. My serum level was "normal" and "normal" MMA and Hcy despite having mullti organ breakdown as described with excess Hcy and MMA.

My internist from 2002 onward was willing to prescribe MeCbl for injection after I had started the sublingual MeCbl and had visible improvement each 3 weeks. Nothing succeeds like demonstrating something is incredibly effective at the "I wouldn't have believed it myself if I hadn't seen it myself". Literally everybody in the office could see the changes each 3 weeks for more than a year and commented on it. After 9 months of not seeing me my ex wife looked right past me and asked the other person "Where is Fred, I was supposed to meet him here?"

Test by all means. But interpret carefully. Hope you find the miracle doc who actually understands and can help instead of throwing up roadblocks.

 

[Freddd]

@telochian, what were your "very large amounts" of b1/b2? I tried as much as 100mg/day and I didn't notice any change at all. (I don't notice change from much of ANYthing, except B12!)

Hi Garyfritz,

The maximum B1 I can take without problem is 15 mg/day in divided doses, B2 10.2 mg per day, B3 50mg. Inositol has the same problems but I haven't thoroughly titrated that so don't know of a useful level. I stopped it completely. The effect was that I needed much more Metafolin to prevent folate deficiency symptoms and insatiable need for potassium along with increasing folate deficiency symptoms. At this point I have no folate deficiency symptoms so they are very obvious when they start. However, all of this was taking place with a copper deficiency still undiagnosed so that may have been a factor. Lot's of people have had this effect as well also without any verified copper problems. However, generally people were on the deadlock quartet and had each of those nutrients demonstrate their effectiveness. So I don't know enough about your situation enough to even speculate or guess as to why not.

Just following the refeeding syndrome hypothesis, there ought to be a next "most limiting factor" unless everything you have that is nutritional is actively healing or healed.

 

[telochian]

@telochian, what were your "very large amounts" of b1/b2? I tried as much as 100mg/day and I didn't notice any change at all. (I don't notice change from much of ANYthing, except B12!)

Originally, I took 1 enzymatic therapies Riboflavin (400mg) and Doctor's Best Benfotiamine (300mg) on top of the 2 Source Naturals coenzymated b complex I was having. I can handle pretty high doses of DQ supplements and was on something like 30mg of methylcobalamin, 8mg of metafolin and 8 mg of Dibencozide as well as 1mg or so of LCF.

I had about 2 days of feeling great and then hypokalemia hit with a vengeance. I don't tend to have stomach issues with potassium gluconate and it was taking around 6-8 grams per day just to calm my heart rate down enough to sleep. Very scary time. Threw out my blood sugar balance as well, still recovering from it. Before that I could get by with around 1 gram of potassium per day or just some coconut water etc. It wasn't until I hit some potassium salt along with the gluconate that things calmed down.

Strangely enough, I have experimented in the past with taking more b complex vitamins per day, to try and get more b1 and b2 and even at doses that should be effective, it didn't have anything like the same effect. I took around 30 mg of b1 and b2 yesterday and as I type I have perfect feet and hands, no numbness at all (and no hypokalemia.....yet). The only difference is brands (b complex is source naturals) and the fact that the b1 I am taking is benfotiamine. I haven't done the research yet, but is it feasible that b1 malabsorption may be in play with my situation? Benfotiamine is supposed to be more bio available.

Google here I come........again.

 

[telochian]

The difference was that the lab had changed the ranges and instead of alerting 99.8 now it was "normal" up to 100 or even 102 at some labs. My remark "Now there is a con job. They fooled us."

In Australia, the reference range for "normal" b12 levels are 135-650 pmol/L and no further active b12 testing is approved unless lower than this. In Japan they changed it in the 80's to 500 – 1300 pg/mL.

It's no wonder we're all "do it yourself lab experiments".

 

[Freddd]

The BIG distinction in Japan is that they are the only country using MeCbl as the official B12 that I know of. This occurred I believe largely because of the mercury poisoning that occurred in the 50s. They started to realize that neurological effects were by far the largest category of b12 deficiency symptoms and that happens at much higher level of serum b12 and that lower levels allow neurological damage before they even tell a person that they are deficient much less neuron damaged. I've spent 30,000 hours of consulting time to solve these problems including saturation reading of B12 journal articles, history and so on.. If people knew and understood what has happened with B12 then it would be a huge scandal, like the VW trick programming but far bigger.

 

[Freddd]

In 2003 when I started healing, I had been working on this problem since 1978. I had crashed quite thoroughly, and in retrospect that was when I transitioned from partial methylation block to methyltrap with a deadlocked ATP cycle. I was stuck in that hell from December 1987 to May 2003. I went from 190 to 285 pounds and lost 50 pounds of muscle in the deal and loaded on the water. I had congestive heart failure which appears connected to excessive MMA with failure of the the ATP cycle which damages the heart muscle and the kidneys as part of the multi organ failure. I could no longer manage to do the programming and consulting and could no longer carry that on. Traveling became about impossible, especially on schedules to do conferences and so on.

I was desperate. I started working to solve the problem to save my life and be able to live it. I could sit in front of the computer and think and read except that my eyes starting being non focusing intermittently in 2002. I was out to solve the problem and heal as quickly as possible. I had been sick for large portions of my life from birth. I knew this was a "you bet your life situation", and I wasn't willing to take 20 years if I could do it in 5. My goal was to heal fast enough to have time to enjoy life.

Once I found a flag for healing I followed it and sought to maximize the rate of healing by considering hundreds of symptoms and improvement or worsening. And kept finding "the next thing" via data mining the internet, from journals to people's experiences. And the things that hadn't been previously available became available. And I found that there were indeed multiple compartments or triage levels or whatever you want to call them which could supply paradoxical seeming symptoms. Very important in the data mining was finding both journal support and successful people and a reasonable hypothetical connection, it had to fit in a "system" way. And the hypothesis had to work with seemingly paradoxical symptoms. Glutathione never fulfilled all that. It was 2 of 3. There was no reports that I could find of real success, just different explanations for the paradoxical symptoms. And it had lots of people reporting terrible "detox" that looked like and behaved like methyltrap and in the absence of glutathione, the "how to fix methyltrap" worked. That interpretation worked and could explain even the usually temporary apparently beneficial results. It had to support all previous successful items which at that time had hit maybe the 60% level.more or less. Like other "effective items it worked fast. Only problem was all the methyltrap symptoms got worse by the hour. However, it was the glutathione experience that untangled all the folate and b12 paradoxes. It had a price. It was following that new set of damage that the copper deficiency damage started increasing so recovery from the glutathione damage never fully recovered for me. None of the other 9 retained as much glutatghine damage but all had methyltrap by a couple of weeks and it didn't start as fast for some people.