REFEEDING SYNDROME - The clues to healing via induced deficiencies

[telochian]

I know it goes without saying Freddd , but your literally a gold data mine.

It wasn't through your protocol that I kick started my methylation system after 8 years of methotrexate (did that by accident), but your protocol and the information surrounding it definitely dragged me out of the various deficiencies that I induced.

I may be misinterpreting things, but this concept of "refeeding syndrome" is kind of depressing. It implies that there will never be balance or an end to this rollercoaster ride, there will always be a deficiency of some kind.

Please tell me I'm wrong.

 

[Freddd]

I know it goes without saying Freddd , but your literally a gold data mine.

It wasn't through your protocol that I kick started my methylation system after 8 years of methotrexate (did that by accident), but your protocol and the information surrounding it definitely dragged me out of the various deficiencies that I induced.

I may be misinterpreting things, but this concept of "refeeding syndrome" is kind of depressing. It implies that there will never be balance or an end to this rollercoaster ride, there will always be a deficiency of some kind.

Please tell me I'm wrong.

Hi Telochian,

Something I would like to mention is that as I recovered I fewer and fewer symptoms, milder and milder. I haven't felt any "stimiulation" from any of the vitamins since I reached equilibrium on LCF. From then out, what I needed to notice were symptoms, many of them mild enough that I didn't really notice them,.. I started developing spider veins and other things that arte usually dismissed as "non-specific" symptoms that mean nothing specific. Not one of my docs or dentists or whatever noticed that the symptoms meant anything. They interpreted them in a narrow view and so it kept buiilding until it got bad enough that I had to notice it. Then I corrected the copper deficiency. Only p[roblem is that I had to have my whole upper jaw extracted because of the breakdown of my gums. My dentist didn't even know that could be a cause. My doctor never mentioned the spider veins an varicose veins except to ask if there was any pain or such. Nobody suggested copper deficiency. So here I am now trying to save my lower jaw gums and teeth.

Part of my problem is that a KNOWN problem with my new diagnosis of CblC is that electrolytes are erratic and unstable. By whole internal balance system doesn't work well. With "refeeeding syndrome" it tends to get taken care of and then the next deficiency symptoms are the only ones that are getting worse, and each one that shows up is successively smaller generally. If I had realized it was copper I would have taken care of it when it was only spider veins. I'm, going to try, from the refeeding syndrome lists of nutrients, mostly micro minerals, a few more of the most likely candidates. Then after various things are done healing the higher demands fade.

Alsi, over the longer run, as for me, maybe the 85mg of zinc was competing with the copper. I cut that back and will see in 6 months if I need a little more than what I am now taking. Some of that was planned zinc and some was "another 15mg in a mixture" which got me higher than I should be. After untangling the first year or two, homing in on the amount of folate one needs to NOT have folate deficiency symptoms.

Again, a lot of that depends on my folate affecting genes. My partner has none of the business at all. B12 and folate had almost no noticeable effect but did appear to promote healing IBS which was about her only symptom. She also had some early gall bladder symptoms and she found an herbal solution and has no problem anymore. She never needed any great amount of potassium, no potassium symptoms at all. But she didn't have all the symptoms those with FMS/CFS have. I wish my docs had recognized all my problems and their causes. In fact I have some anger about having to do it myself. I worked in group health. I did my work at improving people's care. Why didn't the researchers choose to work with the real human active B12s and folate? Then I would have had a life of health instead of illness.

So like a roller coaster each hill gets smaller and smaller and I am hoping that this was my last one. However, if the next one takes 20 years to develop, I probably won't be alive for it or maybe it finally kills me. I've escaped the death by heart disease, by kidney disease, by b12 and folate deficiencies, I've gotten to within possibly days of a wheelchair and come back several times now as I get things more and more under control. Most folks just die from it. Check out how many recover from congestive heart failure and can discontinue medications. My only goal in this is to be well and feel decent. It requires vigilance to notice when things start going wrong and "refeeding syndrome" is a way to look at the problems and come up with a possible answer.

It isn't any different than what has been happening but a way to organize it and recognize the problems more easily. I had immune and healing problems all my life. It's no wonder I had a built up deficit of healing which translates to symptoms and illnesses. Refeeding syndrome is a way to organize the data for clues is all. Please don't let it get you down. There are only a limited number of possibilities. Good luck.

 

[prekdw]

Hi Telochian,

Something I would like to mention is that as I recovered I fewer and fewer symptoms, milder and milder. I haven't felt any "stimiulation" from any of the vitamins since I reached equilibrium on LCF. From then out, what I needed to notice were symptoms, many of them mild enough that I didn't really notice them,.. I started developing spider veins and other things that arte usually dismissed as "non-specific" symptoms that mean nothing specific. Not one of my docs or dentists or whatever noticed that the symptoms meant anything. They interpreted them in a narrow view and so it kept buiilding until it got bad enough that I had to notice it. Then I corrected the copper deficiency. Only p[roblem is that I had to have my whole upper jaw extracted because of the breakdown of my gums. My dentist didn't even know that could be a cause. My doctor never mentioned the spider veins an varicose veins except to ask if there was any pain or such. Nobody suggested copper deficiency. So here I am now trying to save my lower jaw gums and teeth.

Part of my problem is that a KNOWN problem with my new diagnosis of CblC is that electrolytes are erratic and unstable. By whole internal balance system doesn't work well. With "refeeeding syndrome" it tends to get taken care of and then the next deficiency symptoms are the only ones that are getting worse, and each one that shows up is successively smaller generally. If I had realized it was copper I would have taken care of it when it was only spider veins. I'm, going to try, from the refeeding syndrome lists of nutrients, mostly micro minerals, a few more of the most likely candidates. Then after various things are done healing the higher demands fade.

Alsi, over the longer run, as for me, maybe the 85mg of zinc was competing with the copper. I cut that back and will see in 6 months if I need a little more than what I am now taking. Some of that was planned zinc and some was "another 15mg in a mixture" which got me higher than I should be. After untangling the first year or two, homing in on the amount of folate one needs to NOT have folate deficiency symptoms.

Again, a lot of that depends on my folate affecting genes. My partner has none of the business at all. B12 and folate had almost no noticeable effect but did appear to promote healing IBS which was about her only symptom. She also had some early gall bladder symptoms and she found an herbal solution and has no problem anymore. She never needed any great amount of potassium, no potassium symptoms at all. But she didn't have all the symptoms those with FMS/CFS have. I wish my docs had recognized all my problems and their causes. In fact I have some anger about having to do it myself. I worked in group health. I did my work at improving people's care. Why didn't the researchers choose to work with the real human active B12s and folate? Then I would have had a life of health instead of illness.

So like a roller coaster each hill gets smaller and smaller and I am hoping that this was my last one. However, if the next one takes 20 years to develop, I probably won't be alive for it or maybe it finally kills me. I've escaped the death by heart disease, by kidney disease, by b12 and folate deficiencies, I've gotten to within possibly days of a wheelchair and come back several times now as I get things more and more under control. Most folks just die from it. Check out how many recover from congestive heart failure and can discontinue medications. My only goal in this is to be well and feel decent. It requires vigilance to notice when things start going wrong and "refeeding syndrome" is a way to look at the problems and come up with a possible answer.

It isn't any different than what has been happening but a way to organize it and recognize the problems more easily. I had immune and healing problems all my life. It's no wonder I had a built up deficit of healing which translates to symptoms and illnesses. Refeeding syndrome is a way to organize the data for clues is all. Please don't let it get you down. There are only a limited number of possibilities. Good luck.

I read that all protein powders have some form of glutamine. L-Glutamine, Glutamic Acid, or Glutathione (reduced) that could disrupt methylation? What about powdered collagen, Bulletproof collagen has 1mg. Glutamic acid and Great Lakes collagen has 11%. Is this enough glutamic acid to block methylation? Thanks

 

[Freddd]

I read that all protein powders have some form of glutamine. L-Glutamine, Glutamic Acid, or Glutathione (reduced) that could disrupt methylation? What about powdered collagen, Bulletproof collagen has 1mg. Glutamic acid and Great Lakes collagen has 11%. Is this enough glutamic acid to block methylation? Thanks

I don't know. Usually people need the NAC to produce glutathione. I've heard of NAC "detox" and glutathione "detox" but never l-glutamate "detox", the same methyltrap symptoms of NAC and glutathione "detox". So I don't know of any such incidents.

 

[Johnmac]

@Freddd, I've had pretty good effects from the DQ (especially folate) whilst on about double your B1, B2 & B3 doses. Might the effects be even better if I scaled down the B1, B2 & B3 to your doses?

I also recently began inositol at 500 to 1,000 mg/day - with no notable effect on DQ effectiveness. Any comments?

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.

 

[Freddd]

@Freddd, I've had pretty good effects from the DQ (especially folate) whilst on about double your B1, B2 & B3 doses. Might the effects be even better if I scaled down the B1, B2 & B3 to your doses?

I also recently began inositol at 500 to 1,000 mg/day - with no notable effect on DQ effectiveness. Any comments?

Hi Johnmac,

My problems with B1, B2, B3 and inositol MIGHT be related to the copper deficiency too. I don't know. What happened to me for B1, B2 and B3 was a different pattern of increasing folate deficiency symptoms and increased low potassium. I couldn't tolerate enough potassium and couldn't afford enough Metafolin. TYhe inositol took the longest and didn't appear to affect the potassium or folate but did have a different pattern of blocked methylation symptoms.

Many people have had the same effects with B1, B2 and B3. 250 mg of inositol was too much but I have no idea if it was a little too much or a lot too much. I just stopped it and the symptoms disappeared. I was up to 28,800 mg and wasn't having ANY folate symptoms except when something else caused it, very informative.

If you want to see, perhaps you could cut your b1, b2, b3 doses to 1/4 what the are and see what happens.

 

[Johnmac]

Thanks @Freddd, I will quarter the B1, B2 & B3 doses, & stop the inositol, & see if there's any change

If you're interested, I recently posted re my big gains from the Freddd Protocol here. (Plus thanks to you.)

 

[Freddd]

I have here an expanded list of induced deficiencies and their effects. It may or may not apply to any specific person and is attempting to be descriptive of quick and slow refeeding syndrome induced deficiencies. It is subject to change and has so far been through many revisions, now including 8 groups rather than the previous 4.


Version 2.0 12/23/2015


INDUCED DEFICIENCY SYMPTOMS FROM REFEEDING SYNDROME. This can follow 5 days of food deprivation, anorexia, or sort of a pinpoint starvation via vitamin or mineral or amino acid deficiencies. Whatever the “most needed”

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,


IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue


Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.


Group 5 – Copper deficiency after methylation startup has been achieved which often starts refeeding syndrome. 50mg or more of zinc has been indicated as a possible cause. 200-400 mg of zinc has been linked to copper deficiency. Excess supplemental or environmental manganese is linked to copper deficiency. Any or all symptoms can occur at “low normal range” copper tests.


Demyelination of nerves similar to Sub Acute Combined Degeneration except that methylation and ATP startup has occurred, and copper deficiency favors damage to the upper motor neurons with perceived muscle weakness. Brittle nails. Sleep disorders. Mood (especially depression perhaps) and personality changes. Connective tissue breakdown. Spider veins. Varicose veins. Shrinking gums. Gum disease not responsive to usual measures. Unstoppable tooth decay on exposed areas without enamel. Low testosterone


Group 6 – Excess P-5-P, an active form of B6 that appears to drive hematocrit.

High hematocrit. The blood thickens and doesn’t pump as easily. Deep vein thrombosis can result. Other suspected circulatory hazards. Sometimes linked to high testosterone when lowering P-5-P might reduce it.


Group 7 – Excess B vitamins affecting methylation

When taking the active B12/folate deadlock quartet (AdoCbl, MeCbl, Metafolin, L-methylfolate) Excess B1 - Thiamin, Excess B2 – Riboflavin, Excess B3 – Niacin and/or Excess Inositol can all produce an excess need for potassium to deal with Groups 1, 2a and 2b symptoms and/or produce an excess need for l-methylfolate to reduce groups 2a, 2b and 3 symptoms. A person might not be able to correct by taking potassium or folate and may need to reduce B1 <= 15mg/day, B2<= 10.2mg/day, B3 <=50mg, and inositol below an unknown quantity.

Group 8 – Boron.

Arthritis swelling and pain, can be reduced by Boron. Minimum level to prevent deficiency unknown.

https://www.organicfacts.net/health-benefits/minerals/boron.html

Although all of the deficiency symptoms of boron are not fully understood, it is known that boron deficiency might result in the abnormal metabolism of calcium and magnesium. Some of the other symptoms include hyperthyroidism, sex hormone imbalance, osteoporosis, arthritis and neural malfunction.

 

[garyfritz]

Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.

Interesting. I have noticed on & off occurrence of itchy bumps mostly on my torso (sides/back) with some red spots / sorta acne-like lesions on my stomach. These have shown up in the last year since I've been using high doses of mB12/adB12 with the Australian oil product. Do you think they could be caused by photolytic breakdown? I'm always careful to apply the oil in low light, and cover the area as quickly as possible. The oil is stored in a silvery plastic bottle that is nearly opaque.

http://onlinelibrary.wiley.com/doi/10.1002/jps.3030450302/abstract says full sunlight causes only 10% loss per half-hour of exposure, and below 300 foot-candles (pretty bright for artificial light) "no destruction is noticeable." I know that's not what you've said in the past.

 

[Freddd]

Interesting. I have noticed on & off occurrence of itchy bumps mostly on my torso (sides/back) with some red spots / sorta acne-like lesions on my stomach. These have shown up in the last year since I've been using high doses of mB12/adB12 with the Australian oil product. Do you think they could be caused by photolytic breakdown? I'm always careful to apply the oil in low light, and cover the area as quickly as possible. The oil is stored in a silvery plastic bottle that is nearly opaque.

http://onlinelibrary.wiley.com/doi/10.1002/jps.3030450302/abstract says full sunlight causes only 10% loss per half-hour of exposure, and below 300 foot-candles (pretty bright for artificial light) "no destruction is noticeable." I know that's not what you've said in the past.

Hi Garyfritz,

I read the abstract. The first 15 or 20 months I started injecting MeCbl, I found that around 15 days into a vial i started getting acne like lesions that started out itchy then grew bigger and spread. I stored the solution in a refrigerator and it was exposed to light, from room light and lower, fluorescent and incandescent at unmeasured ordinary or dimmer lights, and/or indirect light from windows. I read some research, which measured light exposure in milliseconds of specific wave lengths and whatever it said, it said enough to convince me to test it by wrapping the vial and the syringe in foil. Prior to that, the lesions happened ever month, give or take a few days. After wrapping, it has never happened again. It took about 3 days of exposure to it to cause the lesions, the same with injecting HyCbl solution. Now I used only one cobalamin, MeCbl. at 20mg/ml concentration. The standard in the business is 1mg/ml.

Quoted from the opening sentence of the abstract:

"The rate of destruction of crystalline vitamin B12 in neutral aqueous solutions,..."

There are problems with this sentence, the first being "destruction of crystalline vitamin B12". Well, is it in solution or is it in crystalline form? I have found that crystals are not particularly affected by light. Second. "B12" not otherwise specified is the official B12, Cyanocobalamin. Third, is that B12 used in injections is in a sterile saline as far as I know. So the sodium chloride solution already has dissociated NaCl (Na+ Cl-). Another study I read stated that a brand of CyCbl injectable (bulk bottle) was 35% HyCbl and 65% CyCbl in the late 50s.

Methylcobalamin is far less stable than CyCbl. CyCbl also is converted however, the energy of the photon absorbed might be different in the two. A 20mg/ml compared to 1mg/ml volume of cobalamin stops more light. I work with solutions under deep red "fast ortho film" safelight. In that color light cobalamin solution looks colorless as water as has no effect. In a syringe based on diameter of vial vs syringe, has approximately 10x as much area of light exposure per ml.

Then instead of doing a quantitative analysis I am observing biological response as reported by quite a few people, and that I have experienced many times. Now these lesions are identical as those caused by folate deficiency, either as partial methylation block or methyltrap. People who have that response to HyCbl also have it to MeCbl exposed to light and sometimes CyCbl. It is usually reported as an allergic response to something in the solution like preservative or "cobalt" but that is like saying that one is allergic to sodium because your BP goes up with to much salt.

Now, it appears to happen only when a person has enough cobalamin in serum to distributed by diffusion (tissue absorbed, injected, anything but oral usually). So if HyCbl enters the cell directly when a methylation reaction is needed and there is no MeCbl available, methylfolate is kicked out of the cell causing a failure of DNA transaction due to no methylfolate (methyltrap) and that fits with the fast onset. Partial methylation block doesn't develop such symptoms that fast in my experience.

What is puzzling me is why that is the first symptom to show up for me? From an partial methylation block or methyltrap caused most any other way from glutathione to folic acid., my experience is that there are virtually always 3 or 4 other things that happen before the lesions, most often epithelial tissue failure, but different, such as angular cheilitis, IBS, canker sores and so on.

Group 3 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.

Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily

If you look at "side effects" of Cyanocobalamin from multiple sources, almost all of them are methyltrap or partial methylation block, folate deficiency That may be because it causes that is some people but it may be induced deficiency via refeeding syndrome because CyCbl works for some people.

However, those side effects are common to all forms of cobalamin that are given to humans because of refeeding syndrome. It is even mentioned that some of the most serious side effects are caused by 5-7 mg a week (1mg daily or almost daily) which is more effective. However, occasionally there is a genuine allergic reaction, again is that caused by hypersensitivity caused by severe folate deficiency by methyltrap or is it a "normal" allergic reaction.

I think that study is comparing apples to road apples.

Honestly, I have no idea how much has to be converted to HyCbl (in an equilibirum with Aquacobalamin) to cause the problems and it might be caused by genetic polymorphisms that affect sensitivity. I know HyCbl and CyCbl doesn't work for me. Because of a lot of things I have been diagnosed with CblC adult onset. I also can't use folic acid, folinic acid and veggie folates. They block the methylfolate from effectiveness in one or more of the ways researchers suggest that such blockage happens.

Here is the real problem. The researchers of that paper and most doctors and researchers rarely can recognize the methylfolate deficiency symptoms and especially not methyltrap severe folate deficiency. Most have no idea that severe B12 defciencies manifest as folate deficiency sympotms in hours to days or weeks rather than a much longer time line allowing severe damage to be done.

Those doing research on Cerefolin/NAC didn't recognize the side effects that the NAC causes compared to Deplin, straight Metafolin which has "no side effects different from placebo" and never recognize that they are folate deficiency symptoms from NAC induced (via glutathione generation) causing methyltrap.

For those who have that response it happens over and over. It continues as long as the vial is used and if just stopped, some indefinite period after ending the lesion may clear up, or not. However, fresh MeCbl starts it clearing in a day. Switching back to the damaged MeCbl brings it right back. It is repeatable and predictable in those that respond that way.

 

[Lou]

@Freddd

Another deeply thought out piece of the puzzle for many of us. Thanks, Freddd, for the incredible help you so freely give here.

With that said, I got some questions. Not doubting what you've come up with ( too many occasions where someone apparently made quite sensible objections to your thinking, raising my own doubt, and then you come back with some tour de force rebuttal that cuts legs out from under exceptions and usually brings to those of us listening a better understanding of what's going on).

Do I remember correctly in saying you now take 15mg cu daily? That's a lot of supplemented copper, Freddd. Do you think you burn that much because of the high doses of metafolin and mb12? Or else you're not getting nearly that actual amount because you take it with food? And if you are actually absorbing 15mg daily there will soon come a time when you've caught up with deficiency, have a short leveling off period and if not an eye on the ball could go into copper toxicity.

I have zero doubt you've already thought through all this, just mentioning it to hopefully provoke you expanding on these issues for all of us here. For me, for years now, proper balancing of copper has been a tedious task, I think it's usual I'm in a depleted state but supplementing goes quickly from great response (better wound healing, clearer eyes and skin, fewer or no broken capillaries, less feeling of muscle weakness, etc) to toxicity symptoms such as stiff knee, falling hair, etc. What I suspect --but do not understand-- is that it's not excessive copper, at least not directly, causing the toxicity symptoms but some other nutrient depleted by the added copper. Any thoughts there?

You may have already done this, say I am sorry if you have, but do you have thoughts about most likely minerals or other nutrients either depleted or less bioavailable from copper supplementation? Thanks for any help you can give.

In my case it may be manganese as it always shows up low on tests, too, so perhaps adding the copper zaps short supply of manganese.

 

[Freddd]

@Freddd

Another deeply thought out piece of the puzzle for many of us. Thanks, Freddd, for the incredible help you so freely give here.

With that said, I got some questions. Not as in doubting what you've come up with (have seen too many occasions where someone apparently made quite sensible objections to your thinking, raising my own doubt, and then time and again you come back with some tour de force rebuttal that cuts legs out from under the exceptions and usually brings to those of us listening a better understanding of what's going on).

Do I remember correctly in saying you now take 15mg cu daily? That's a lot of supplemented copper, Freddd. Do you think you burn that much because of the high doses of metafolin and mb12? Or else you're not getting nearly that actual amount because you take it with food? And if you are actually absorbing 15mg daily there will soon come a time when you've caught up with deficiency, have a short leveling off period and if not an eye on the ball could go into copper toxicity.


I have zero doubt you've already thought through all this, just mentioning it to hopefully provoke you expanding on these issues for all of us here. For me, for years now, proper balancing of copper has been a tedious task, I think it's usual I'm in a depleted state but supplementing goes quickly from great response (better wound healing, clearer eyes and skin, fewer or no broken capillaries, less feeling of muscle weakness, etc) to toxicity symptoms such as stiff knee, falling hair, etc. What I suspect --but do not understand-- is that it's not excessive copper, at least not directly, causing the toxicity symptoms but some other nutrient depleted by the added copper. Any thoughts there?

You may have already done this, say I am sorry if you have, but do you have thoughts about most likely minerals or other nutrients either depleted or less bioavailable from copper supplementation? Thanks for any help you can give.

Hi Lou,

The 15mg was what I reached by titration. The case studies and trials went as high as 20mg by titgration with no problems. I got improvement all the way to 12.5 to 15 mg. The research indicates that copper replenishes very slowly. My doctor is testing periodically, each 3 months. My target is mid-range and then what it takes to maintain that. I have ordered another bunch of minerals because the symptoms now getting revealed ought respond. Next week I will be adding boron and I have several more coming, which I will test separately and in combinations. I went to the list of minerals in liver and to the refeeding syndrome reports that list the minerals they had to use and in some research the conclusion was that people will end up needing just about all of them over time. The one that is needed next is the one that responds pretty quickly working on the newest symptoms or most prominent ones no that didn 't used to be.

I didn't get any copper deficiency symptoms until recovering from the glutathione damage and that was the final straw that pushed my need over the edge. Zinc, copper, manganese, iron can interfere with others, so copper directly competes for absorption with zinc for example. They said 200mg is the lowest confirmed cause and 50mg found a case that no other apparent cause but who knows with very thin data.

One other thing. My testosterone went up 300ng/l with the increase in copper and that increase was causing a problem so I am down-titrating and testing with my doctor

 

[aquariusgirl]

@Freddd, what copper test do you use? rbc copper? I have been helped by a form of copper called mitolipo....supposedly some special form of copper.....but I have never tried any other kind. I am 3 months in....not sure on the testing...would appreciate any guidance. tnx

 

[Freddd]

Hi Aquariusgirl,

First I had half a dozen or so very definite symptoms with the major ones being "similar to Sub acute combined degeneration" type lesions with emphasis on the upper motor neurons and decreased muscle strength. Additionally I had sleep disorder symptoms I haven't had in 11 years, blocked methylation depression I haven't felt since the glutathione trial and then back to 12 years ago. I've never had brittle hair and nails in my life before that I know of. So I had a copper test that coupln't be done by a local lab and was sent to one in the east. This was done via my doctor and had a range from 72-168 or something like that with my level at 74 and lots of symptoms. I know nothing about any special variety of copper. The supplement used in a UK study was Solgar Copper amino acid chelate which is what I used. There are other brands of such.n Have you seen the new groups 1-8 formerly groups 1-4 of groups of symptoms by nutrients?

 

[SJB944]

@Freddd I seem to have a high need for potassium, so wondering if there is anything that helps potassium absorb, or is synergistic etc.

I currently take about 3100mg of potassium a day, 3 potassium citrate tablets with each meal (99mg each) and 4 full t-spoons of potassium gluconate powder throughout the day - upon waking, mid-morning, late afternoon, and before bed. At this amount of potassium it does tend to irritate my gut.

What I consider potassium deficiency symptoms upon waking this morning: muscles really bite and start to cramp on tightening, weakness in arms and legs, shakey in hands, gut feels clogged (but bowels moved), with intense tightness in gut under sternum and generally, a real infected ache in all muscles and gut, slightly panicky feeling which can get worse if left unattended. Dermal itching, which is transient, and not location dependent. When it gets really bad, I tend to get heart palpations and shooting nerve pains.

Taking potassium does seem to start to alleviate these symptoms, but at the moment never seems to quite get on top of it, and I'd say I'm at about my gut tolerance level of potassium. Actually, low potassium symptoms are something I now recognize as having experienced much of my life at various time and in various degrees.

Seems to have a high level of lactic acid feeling in the muscles also, with a line like pains when tightening muscles.

Since on protocol about 5 years with B12, and about 2 years with all 4 of the DQ. I can walk about 2-3klms a day, where as the maximum I could do at one time was about 20 meters, if I was lucky (ill for about 20 years). I have to walk at a comfortable pace, when I have attempted to push or kick into a more anaerobic state all hell breaks loose, including I think a significant increase in the need for potassium -- there is something significant in this, but I'm not sure what.

I have sort of plateaued at the currently levels of mb12 etc (see below) I have some old symptoms returning, and while I can still walk energy levels have dropped. I'm having more gut problems, particularly that infected ache feeling, and really caught up right side just below right ribs (no sign of classical liver or gallbladder issues) with a numbness that goes into my right side of back and down into my right knee, this numbness can also be felt on my right arm and sometimes right side of face -- this is an old symptom that has recently returned, and with more intensity that I recall previously. It comes with a loud liquid noise in my stomach, prior to eating.
These symptoms had largely disappeared in the last 2 years.

Think it is liver related in some way, but nothing I did for that helped over the years, only this protocol has been of any value. I'm actually thinking time to up the MB12 again....it certainly doesn't feel as potent these days. But have concerns over increasing potassium needs.

Does the body get to a level of mb12 usage and then start producing old symptoms because it needs more?

Currently taking:

15mg MB12 (5mg on waking, 5mg mid morning, 5mg mid afternoon) -- I'm starting to question the effectiveness of this amount and may need to increase.
5mg ADB12 after lunch.
12mg Methylfoate a day - 5* 2.4mg throughout day -- seem to keep the bulk of low folate symptoms at bay at this level -- have been upto 24mg when driven by too much b-complex
1/2ml injection of Magnesium every other day.
1/8th of a Nature Made b-complex with C in the morning -- I have increased up to 1/2 a tablet twice a day but had insatiable need for potassium and folate.
2mg Vitamin C.
1 tablet of Lecithin (increasing disturbs sleep).
100mcg selenium with evening meal.
600mg l-carnitine liquid (Jarrow -- can't tolerate Fumerate) a day -- 2 t-spoons morning, 1 evening. Recently, reintroduced after stopping for about 2 months.
Fish oil daily, about 1000mg a day.
Gamma E Complex - 1 tablet a day, 200ui
(Last blood test in September showed Potassium: 3.9 on a scale 3.5-5, Zinc: 13 on scale 10-25, Copper: 13 on scale 10-30.) That said, when I did Dr Myhills test about 4 years ago, they showed lower copper sodase, lower zinc sodase. low manganese sodase.

Zinc, in recent years, tends to increase neuropathy -- I haven't tried it again for about 9 months. Taking no other minerals atm.

Apols this is so long. I post here in case it is of use to others, happy to PM if prefer. Any suggestions, pointers would be helpful.
Cheers
SJB

 

[garyfritz]

Currently taking:
15mg MB12 (5mg on waking, 5mg mid morning, 5mg mid afternoon) -- I'm starting to question the effectiveness of this amount and may need to increase.
5mg ADB12 after lunch.

That is a lot. What form of MB12/ADB12 are you taking? I was taking 30-40mg/day of mB12 (Country Life) and still not controlling my symptoms. Now I take about 1.5mg/day mB12 and 4.5 mg/day adB12 (transdermally) and my symptoms are MUCH better. So possibly your delivery mechanism isn't effective?[/user]

 

[SJB944]

Thanks @garyfritz . I take Enzymatic Therapy Mb12, and Anabol Naturals Dibencoplex. So you take more ADB12 than MB12? That's interesting.

I'd certainly look at a transdermal method. You use oils? Where do you get them from?

 

[garyfritz]

@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.

 

[SJB944]

@garyfritz Thanks.

 

[alicec]

@Freddd Thank you for providing this broad context in which to understand puzzling phenomena.

I have come to realise that the most likely explanation for what has been happening to me over the past year or so is a gradual depletion of one or more nutrients and for months I've been casting around fruitlessly trying to identify what these might be.

Since one of the worst parts of my decline is worsening brain fog it has become increasingly difficult to think my way out of the problem.

It has been mainly my experience with the deadlock quartet that convinced me of the depletion idea. I've certainly gained considerable benefit from it but only for a time. Invariable it has felt like something else kicked in and shut down the whole system.

Several months ago I decided to take the plunge and try really huge doses of methylfolate and methylB12 (along with more moderate doses adenosylB12 and my usual dose of acetylcarnitine - 2 x 500 mg - and all the usual basics). This did make an enormous difference - it truly felt like filling a near bottomless well in what I presume was a penetration of the CNS by the vitamins. However again I could not sustain the gains and eventually I really began to decline.

I had to stop, so cut back to just a smallish dose of the folate and B12s, continuing the carnitine and other basics while I rethought and regrouped.

Gradually I realised that I was declining noticeably (most worrysome symptoms brain fog, blurred vision/sore eyes and mood deterioration) and was becoming sensitive to supplements that I once tolerated readily - namely magnesium and biotin (this was in addition to an inability to tolerate choline and phosphatidyl choline which had developed earlier). This is when I seriously started to believe in the depletion idea, something which I had just considered a possibility previously.

Early in the piece I tried your suggestion of reducing B1, B2 and B3 but this didn't seem to help at all. Reducing B2 seemed to be a problem. I also experimented with reducing B6 which I was taking in quite high amounts because of oxalate problems. This was definitely not a good idea.

It was in the context of B6 that @MacGyver made me think particularly about boron (see his post here). At about the same time I caught up with this thread and have been able to put my boron experience into a better context.

I have been taking a trace mineral preparation containing 0.75 mg boron for a long time but within a short time of swallowing 3 mg (as boron glycinate) I felt a remarkable clearing of the brain fog and increase in enthusiasm and drive. This lasted only an hour or so so I took more, getting the same clearing though gradually diminishing. I ended up taking 15 mg the first day and have continued this dose.

Interestingly after about 4 days I got virtually no effect from the boron and imagined that I had satisfied that depletion and now something else was kicking in - but what?

I considered all the minerals. I don't think copper is likely since I have an elevated non-ceruloplasmin copper and have to take a fair amount of zinc to keep this under control (currently 50 mg/daily). It is time to get more tests so I will check this. As for the others, nothing stands out as obvious and I would have to order stuff in (just happened to have the boron on hand) but I will certainly do some experimentation in future.

I returned to thinking about B2 and B6 since I had bad experiences with reducing the dose of these. At least at this point increasing B6 is a bit problematic but increasing B2 has had a profound effect. Again after taking 100 mg riboflavin (in addition to the usual 35 mg R5P) I experienced a remarkable clearing of the brain fog, increase in enthusiasm and drive and perhaps a slight improvement with the eyes. I added more but it is early in this experiment so I can't report anything else yet.

So I definitely seem to fit with category 8 but am the opposite of category 7, at least where B2 is concerned.

Without complicating this post further I'll just say that experiments with increasing methylfolate and/or methylB12 at the same time as I was experimenting with boron makes me think that much of the effect is actually due to facilitation of methylB12. Of course there is also likely to be an effect of boron itself but it is hard to pinpoint this. Need to do more reading.

I suspect B2 will not be the end of this journey - there are probably other things which have become depleted and will soon show up.