Active B12 Protocol Basics

dannybex

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Since MeCbl et al I've recovered. I have some experience, and working hypothesis and have 40 years of analysing things like this in consulting and analysing the group health plans for decades and designed and wrote programs for the group health business. If you would feel better if I hid all this unless you paid me $1000 for a consultation, we can do it that way if you prefer, or you can ignore me. I'm giving away my hard won experience and data. My consulting standard is your money back if not satisfied. As you are paying nothing and I'm giving this away, feel no reason to pay any attention to me.. I have failed to satisfy on 2 software projects, one canceled and one not satisfied by change of management and and an estimated delivery that was not one time was the excuse. If I were consulting for you I would help you map your symptoms and all that. My best advice, find somebody else who has healed from these symptoms and conditions and ask them how they did it. That is all I can tell you, how I healed myself and a few others have healed themselves using this info. It is VERY FUSSY and one mistake in the logic or order and a person won't see it. Be well. Good luck.
@Freddd Please don't take this the wrong way because I don't mean this as an attack or insult. But over the years you keep saying you've recovered, you've healed yourself, yet every few years you mention dealing with new issues causing more problems, like when you suddenly couldn't tolerate dietary folate, or when your neuropathy got worse when you became copper deficient after taking 50 mgs of zinc without any copper -- something you recommended for years and years.

I'm sincerely glad you've been able to recover to the extent you have, and I know others are grateful that your advice has helped them too. But perhaps a better word would be 'recovering'?
 
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dannybex

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And this is slightly off-topic, but it's important to know that things like NAC and other nutrients don't always cause problems, and in fact can be THE thing that helps someone heal or recover completely. Again, what doesn't work for one person may be what works for the other.

Here are two case studies. Neither are ME/CFS patients, although it's possible that the 2nd one could've been misdiagnosed as such depending on the doctor, at least early on in his illness.

The first gentleman suffered from mercury poisoning big time. His health declined severely, but in only 5 months, all of his health issues resolved. Chelation helped a little, but it wasn't until he was put on selenium and NAC that he got well.

https://www.tandfonline.com/doi/full/10.1080/24734306.2017.1392076

The second is a man who was diagnosed with ALS. He recovered completely after chelation, plus selenium and other "vitamins and micronutrients". Some of those could've included b12 and other things talked about on this thread, but there's no specific mention of massive doses of methylB12 or methylfolate.

https://www.karger.com/Article/FullText/477397

Note too how what 'worked' for the first person wasn't want helped the other.

Okay, I'll shut up.
 

Freddd

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@Freddd Please don't take this the wrong way because I don't mean this as an attack or insult. But over the years you keep saying you've recovered, you've healed yourself, yet every few years you mention dealing with new issues causing more problems, like when you suddenly couldn't tolerate dietary folate, or when your neuropathy got worse when you became copper deficient after taking 50 mgs of zinc without any copper -- something you recommended for years and years.

I'm sincerely glad you've been able to recover to the extent you have, and I know others are grateful that your advice has helped them too. But perhaps a better word would be 'recovering'?
Let's see, I am managing Subacute combined degeneration. I am managing scoliosis with the help of my chiropractor. I am being treated for the neuropathies with a couple of different electro stimulation devices and I'm getting some nerve function returning. And I am managing other problems. However, I am HEALING, recovering from CNS COB[II] deficiency caused by TCR deficiency. Anybody else doing that? That involves several at least of the micronutrients in the more complete version of this list of group's of refeeding symptoms. So let me put it this way. If a person has one or more compartments having healing then they are likely having more and other symptoms worsen in other compartments that are not healing. SO I went through a couple of hundred cycles of folate deficiency from refeeding syndrome. I had my specific group of quick symptoms each time. The cycle goes to back to childhood. as does a low potassium . Right now I am RECOVERING from TCR deficiency in my CNS. That appears to be the cause or a contributing cause of FMS, CFS, MS, Parkinson's and other things in combination with micronutrient deficiencies which accounts for the specific damages in the cell growth or failure to do so becasue of the deficiencies.

I haven't had the symptoms fibromyalgia SYNDROME, of Chronic fatigue SYNDROME, Multiple chemical sensitivity SYNDROME, congestive heart failure which is also a syndrome. Healing all those along with poor absorption, conflicting absorption caused then copper deficiency which caused upper motor neuron damage, liver damage and SACD lesions. The Subacute Combined Degeneration and such things were affected but not corrected. They are damage, demyelination, a first cousin to MS and Parkinson's; FMS, CFS ARE the symptoms, at least in present definitions. I started working on it in 1978. I have a SYSTEM here for recognizing the bottlenecks.

Each person's patterns of bottlenecks are their own, and everybody has them for many possible reasons. These symptoms mean something in connection to nutrients changes. While ALL of these syndromes appear to be subsets of refeeding SYNDROME, the FMS, CFS etc were all gone by 2007 and haven't been back. The exercise intolerance isn't present and hasn't been for more than 12 years. The terrible fatigue has never been back. I think the basic FMS neurological changes are caused by lack of COB[II] or adequate replacement in the brain. So what FMS, CFS, etc symptoms do I have? My biggest problem, now that my liver has healed, is scoliosis which is based on damage from being broken in half sideways in 1972 when a truck ran a red light and hit me. I have shifting muscle pains that change every day as my balance keeps changing with each chiropractic adjustment. If you define FMS., CFS and so on as being subacute combined degeneration, liver damage, scoliosis, then I am recovering from FMS and CFS. But it is quite past tense. I recovered from FMS and CFS and CHF and others in the past. That is old news. They were healed and since I haven't allowed the nutritional deficiencies to continue, I haven't gotten the FMS and CFS symptoms of the syndromes for more than a decade now.

I don't have and haven't had any FMS or CFS symptoms. Those are syndromes and fortunately those symptoms can be healed. I use to have all 18 FMS pain points, I don't any more. Those specifically healed during the titration of methylfolate once it became available enough that I could titrate above 8mg.
I also don't have all the hypersensitivity. Demyelination iis on pause and has been since I got the copper back up to a more reasonable level after the healing turn-on that sent the level plummeting even more and caused additional neurological damage

So Look at group 3. These are PREDICTED methylfolate deficiency symptoms, or bottlenecks of whatever cause. Then they can be predictably caused time after time with folic acid and low dose methylfolate. They also are not caused, predictably, if a person takes enough methylfolate. The person can have a complete cycle of onset and correction in 5 days. They are the group of symptoms, and most have several, a pattern, starting anywhere from very quickly to generally on the 3rd day as the low potassium symptoms, but those can also appear on the first day from red cell maturing and goes back to the 50s in it's recognition. The trick is a person can see which patterns they get. I used to have chronic daily headaches and a 2 week 3-5 day "suicide headaches" (yup, the same two week periodic folate deficiency) dating back into mid 80s. I literally haven't had a headache, killer or just ordinary headache, in decades. Skin lesions can still be a good indicator when the needed folate shifts. Be Well. There is no need to continue misery if you can untangle the problems. I've learned about about copper tooin the past decade.

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

"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” item is will often cause a strong response. The first usual notable symptoms occur on typically the third day of starting a previously insufficient nutrient with normally feeling or seeing the changes within minutes to hours. From MecBL I had over 30 symptoms respond in the first few hours with blow my socks off intensity with neurological startup and potassium deficiency on the 3rd day along with increasing folate deficiencies that took years to figure out. For instance it was noted in the 50s with injections of B12 with potassium deficiency (hypokalemia) as a side effect. It is dangerous and can be unpredictably fatal if not corrected and the cause is continued. When they say people are dying in Syria after they have been starved and given food, they are often suffering REFEEDING SYNDROME. When previous symptoms return that can also indicate a developing deficiency that started hindering cell formation. "

"Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels. Frequently called “NAC DETOX” or “GLUTATHIONE DETOX”. Can be caused by folic acid, folinic acid and for some people, like me and quite a few others, excess vegetable folates. Further excess B1, B2, B3 and/or inositol can increase methylfolate deficiency symptoms. Methylfolate, MeCbl and just about anything else that starts healing can cause the folate deficiency symptoms.
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 in a general sense, a person may have had onset of these hundreds of time if they are on the borderline
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, painful cracks in the skin at the corner of fingernails at approximate right angles to nails, can take months to occur and it may be only non mood or neurological symptoms.
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.
High MCV, > 93, persistent and resistant to MeCbl and B6 and/P5P. The warning about too much folate causing subacute combined degeneration which kept folic acid to a max of 800 mcg for decades becasue large folate doses can lower MCV without MeCbl. There is a long history to this."
 

Learner1

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Each person's patterns of bottlenecks are their own, and everybody has them for many possible reasons.
Thanks, @Freddd. Well said!!

It is amazing you were able to figure out your very specific and very serious issues on your own, starting in 1978. Your patterns and issues are so completely different than mine, though I do need folate, it is not the driver for me, and I'm wary as too much folate, just as too little folate, can lead to cancers.

I'm very thankful to live in an age where it is relatively easy and inexpensive to understand one's methyl genetics, as well as extremely helpful lab tests for methylation, comprehensive nutrients, metabolomics, and metal, chemical, and mold toxicity. It's much easier to figure these patterns out these days, with more experts out there to help, so hopefully people won't get themselves into such a problem with refeeding syndrome to begin with.

Your experiences should make us all wary of experimenting on ourselves without a decent understanding of some of the dynamics of these biochemical pathways. I've gotten a huge benefit from a customized methylation protocol based on lab work, and have learned that needs can change quite dramatically over time, so a personalized plan is an ever moving target. Focusing on new symptoms that arise, then tweaking the protocol to eliminate symptoms is very useful.

Anyway, thanks for being such a pioneer, and best wishes as you continue tackling your current challenges. :nerd:
 

Freddd

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That is why everything is titrated. The folate is not a driver. B1, B2, B3 P5P arfe drivers. the folate is merely needed for the B12 for methylation process. The dose proportional curve appears to be good as to shape, but the dose needs to be titrated.

The method depends on some very specific things being done in a specific order, that is not dependcent on my peculiarities. It is basic cell making. Things start up by compartments. The catch is a person needs to collect daily data for many trials to make the matrix of patterns of what breaks cell making in YOUR body. Much of it can be watched on the skin and their nutrient it will respond to is the one causing the top layer of symptoms as it changes to detect the bottlenecks. I spent 30 years designing group medical software and analysing annual claims in full detail detecting for detecting fraud, incompetence, what docs should be invited for what 2nd opinions in what treatment, not to mention total costs projected for the next 3 years.

I had over 100 doctors over a couple of decades looking for some understanding of my problems and a functional diagnosis and treatment. The 100+ docs of many varieties were 100% wrong. My internist for about 6 months and he treated what he could but I was rapidly heading for death from Congestive heart failure. On may 21ST 2003, I had my first MeCbl. In an hour I know my life was changed. In 3 weeks I had another appointment. Everybody in the office could see the difference, and each 3 weeks for the next year. they could to. My ex wife didn't recognize me when she didn't see me for 9 months. About that time my internist said "I've never seen anybody come back from so far over the line". So he retired and my new internist monitors what they can and actually said 3 months ago that my blood tests were the most normal they have ever been since I started at the office in 2002.

I also learned some of the nasty lack of meaning in copper serum levels and what they mean is screwed under other circumstances. I have a group of people all working through their versions of this. AND EVERYBODY HAS a pattern and there appear to be several overall patterns, ie MS, PARKINSON'S fms,K cFS, DEPENDS ON micronutrients. THen each main path splits into several smaller ones.

They clearly don't understand. And part of my method, using the internet as a partial Monte Carlo simulation is certainly a different approach. I would have died many times in the past 16 years without making the right choices, I also wouldn't have healed most of what I had except for some outright damage. I have not been able to find a doctor with enough expertise in my problem areas to be able to treat me for all the usual stuff. much less anything really off the beaten track. There is a lot of bad research our understandings are built on that are just plan wrong. Hope you can figure out how to fix your things. So far the easiest were the sickest people, their pathways stood out the most. with nothing subtle. were the easiest to find the pathways for. Be Well.
 

dannybex

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Thanks for the clarification @Freddd. I didn't mean to suggest you weren't to be commended for your truly valiant efforts, just that when one reads your posts here and elsewhere, in general they come across like you've recovered your health completely. Anyway, best of luck on your continuing journey.
 

Freddd

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Thanks for the clarification @Freddd. I didn't mean to suggest you weren't to be commended for your truly valiant efforts, just that when one reads your posts here and elsewhere, in general they come across like you've recovered your health completely. Anyway, best of luck on your continuing journey.
Hi dannybex,

I never meant to convey that. I've last 4 inches in height the past 5 years, dealing with results of copper deficiencies, a loss of 4+ inches of height, degenerating connective tissues, my multitude of damaged disk thin as a piece of paper, and scoliosis with the chiropractor twice a week allowing me to stand up almost straight, correcting the ACTUAL B12 absorption system that is completely unaffected by the CblC disease any more that is one of two natural systems, one very simple and one very complicated.

And in the 41 years (35,000+ hours) since I started researching what made me sick all the time. The car wreck that broke me in half sideways was the trigger of the FMS. Half of the people with FMS were triggered by traumatic injury and aggravated by micronutrient-micrometals deficiency(s). Basically I never healed entirely and that triggered a lot of nutritional strain on certain items causing a slow motion refeeding syndrome. As that is manifested in many different ways for each person, it makes for patterns of symptoms. On the list of affected symptoms, and it only has an estimated 50% of symptoms that could be on it using high detail and international lists, responses to different subsets of symptoms points at certain nutritional "bottlenecks". In analysing the patterns of claims of millions of people, there is of course clumping. People with chronic conditions have more secondary symptoms than people without chronic conditions. I had a bunch of injuries. Failure to heal generates all sorts of secondary symptom and point at bottlenecks that occur in the delivery of nutrients for many reasons, not the least of which are what nutrients or medications a person is taking. You know, patterns of claims pointed at insurance fraud in the business I was in. It pointed at improper behaviors. It pointed at people that are likely to have other claims in the futures from ongoing health problems. We also were able to point out that 80% of management costs were to control procedures done with less than 5% total costs. Patterns can tell a lot. We presented at group health conferences on these things. As a group it makes a very interesting examples of pruned Monte Carlo simulations.

I remember all the problems you have had with various things. Hope you are doing better. I know that just becasue I got rid of some secondary symptoms my problems are damage from injuries and cascades from there. And I'm 71 and are having plenty of problems that are common in aging. And in being able to now deliver COB[II] to the CNS, I know what I have missed in many of my 71 years. And it appears to the the keystone of many neuromuscular chronic conditions. I am preparing a post that will detail things Be well.
 

dannybex

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Hi dannybex,

I never meant to convey that. I've last 4 inches in height the past 5 years, dealing with results of copper deficiencies, a loss of 4+ inches of height, degenerating connective tissues, my multitude of damaged disk thin as a piece of paper, and scoliosis with the chiropractor twice a week allowing me to stand up almost straight, correcting the ACTUAL B12 absorption system that is completely unaffected by the CblC disease any more that is one of two natural systems, one very simple and one very complicated.
Hi Fred,

I'm curious if you ever saw...I think it was @Asklipia's threads, where she started supplementing with K2 (MK4) back in 2013, and was able to add 2 inches to her height. Not sure if it would help you, but...here's a link to one of the pages where she mentions it -- and the connection to 'fake folates' -- about halfway down this page:

https://forums.phoenixrising.me/threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/page-3

I remember all the problems you have had with various things. Hope you are doing better. I know that just becasue I got rid of some secondary symptoms my problems are damage from injuries and cascades from there. And I'm 71 and are having plenty of problems that are common in aging. And in being able to now deliver COB[II] to the CNS, I know what I have missed in many of my 71 years. And it appears to the the keystone of many neuromuscular chronic conditions. I am preparing a post that will detail things Be well.
Thanks Fred. I was doing 'better', but have gone downhill again quite sharply, hence my return (you lucky guy) to the forums. As you say, so complicated, and different answers for all of us, but even though it's gotten quite bad, I'm determined to figure it out, despite my blasted brain fog. Take care.
 

Asklipia

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Hi Fred,

I'm curious if you ever saw...I think it was @Asklipia's threads, where she started supplementing with K2 (MK4) back in 2013, and was able to add 2 inches to her height. Not sure if it would help you, but...here's a link to one of the pages where she mentions it -- and the connection to 'fake folates' -- about halfway down this page:

https://forums.phoenixrising.me/threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/page-3
2 cms not 2 inches, but that was quite enough! We have stopped taking vit K in 2015 I think. But the last three years of lipophilic B1 has helped to keep growing! Not as fast but certainly doing something, in bones but also in muscular strength.
Be well!
:)
 

Freddd

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2 cms not 2 inches, but that was quite enough! We have stopped taking vit K in 2015 I think. But the last three years of lipophilic B1 has helped to keep growing! Not as fast but certainly doing something, in bones but also in muscular strength.
Be well!
:)
Hi Askilpia.
I did come across the vitamin K, though I couldn't tell you where or precisely Then I expanded my reading on it and started taking it. I am taking it. I can't tell anything for sure currently because I have been getting hit by low copper because I have started CNS healing with the COB[ii] provided by TCR. That has started me looking explicitly at bottlenecks caused by lack of receptors or at least supply lines or whatever the many various are. There is that such troublesome word in English; "is", "are" and variations in calling . When the copper is deficient when healing starts with it when being supplemented and suddenly it is worsening the effects of copper deficiency because there is not enough copper available and it causes a cell failure in upper motor neurons. More copper is also used making /maturing red blood cells and that is high priority so it steals from other processes using it. It causes so much of the problem. I've seen it mentioned in research and in person and from people who are managing to have some healing but also having some induced deficiencies. So I am wondering if for instance it can have some bottleneck indicators in some places and effectiveness in other areas.

Are the effects of vit K subtle enough that they get lost under refeeding syndrome symptoms that are more prominent. I 've had many incidents of getting rid of one symptom and find another one hidden under it. Reading more of that K postings perhaps my muscle spasms, increased, and I have also been finding that a calcium dose can help that. This is another pattern of bottlenecks I need to search on.
 
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Found this copper homeostasis study which might shed some light on the bottleneck phenomena happening to myself, and perhaps others, with their copper supplementation:

"Copper retention is strongly regulated, but high and low copper intakes exceed the regulatory mechanisms, leading to copper depletion (12) or excess retention (8). Three sites of regulation have been identified. As copper intake increases, the efficiency of absorption decreases, but more copper is still absorbed (8, 12). We have recently shown that some of the copper that appears to be absorbed is retained in the intestinal mucosal cells, so it does not enter into systemic circulation and is eliminated through the gastrointestinal tract when intestinal cells exfoliate (21). Finally, endogenous copper losses decline when intake is low, so less is eliminated, and increase when intake is high, so more copper is eliminated (12)."

full text: https://naldc.nal.usda.gov/download/2052/PDF

Cindy
 
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@dannybex

There is a very fast way to tell now. If HyCbl or CyCbl causes acne it is causing methyltrap. Then, MeCbl will reverse it in a few days,. The glutathione causing "catastrophic B12 deficiency" is characteristic of certain problems that may be misidentified. So much in B12 research is seriously messed up.

And the language used hides the problem. The understanding of the absorption system has been screwed up for decades.

So for years the research has been pushing the TC1, TC2, TC3, HTC1, HTC2, HTC3 and ID, and expensive use of ATP and enzymes to convert HyCbl and CyCbl to the required COB[II].

Recent research is changing all that. Say goodby to TC1-3 and HTC1-3. Instead there is Haptocorrin in place of TC1 and TC3 and HTC2 and HTC3. And then there is NOW TransCobalamin Receptor (TCR) which strips the ligand right there in the receptor and delivers COB[II] which is used for both mitochondria and methylation locations. A characteristic of people with TCR deficiency is that the person can tell the difference between the 1 in 10 batches of MeCbl that will substitute functionally for COB[II] in methylation locations and AdoCbl can be used in mitochondria locations. I could distinguish the AdoCbl from the MeCbl and had separate distinguishable effects. If MeCbl varies for a person from 0 to 5 stars, then COB[II] is at least 6 stars, and when TCR is present in sufficient quantity to turn on CNS healing.

I am again speaking from experience. I learned how to generate/regenerate TCR. Prior to this I had never seen or known of anybody restoring TCR and B12 usage becoming more normal. I can no longer tell the difference between one batch of MeCbl and another or the difference of AdoCbl, they both become "6 star" COB[II]. I have experienced COB[II] startup 7 times in my life. The first 4 times gave me refeeding syndrome from hell, potentially nearly killing me as I had no idea what to do or manage it. Adelle Davis was right. Liver is a miracle food. It has all of the nutrients, at least 5 in a deadlock quintet,or more, of what the researchers were looking for in the liver concentrate as being "protein mystery factor". They assumed that a single item was their mystery factor. It wasn't and isn't.

So last I told you I was taking 10 mg subcutaneous injections 3 times a day and could tell the difference between 2 and 3 times a day. I was getting very little into the CNS and Cbl disappeared from it very quickly. This is a brute force way to get barely enough and barely good enough Cbl into the CNS for healing. It was a desperation from an almost non-working cobalamin system.

That dose of 30mg a day is 210 mg a week has kept me alive going face to face with copper deficiency and lots of damage from that and who knows what damages from other micronutrient metals deficiencies.

What I found was I had to take the whole group of micronutrient but not all together. Vitamin C in some quantities blocks copper absorption. Zinc interferes with copper and other micrometals absorption. Iron should be taken on lky if you need it and separately from all kinds of things and it interferes with a lot of things. Copper interfere with other micronutrients absorption. It took me 7 years to titrate the methylfolate and how it affects the multi compartment usage pattern, the paradoxical folate deficiency is a part of refeeding syndrome with bottlenecks. The 400-800 mcg dose for folic acid was thought to be safe. It isn't for me. Even a month of 45 mcg per day of folic acid was able to build up to a level it could block 45mg of Metafolin enough to makes various skin lesions.

It took 7 years for me to almost solve my copper situation and the pattern of serum falling with copper healing starting up by compartment doing more damage other than where it was healing.

All of these things and the rest of the micronutrients were required to be able to build TCR and possibly other micronutrient receptors. It wasn't easy to be able to absorb all the micronutrients.

Last August I had some fierce refeeding syndrome by going up to 7000 feet altitude starting red cell making, and it was the worst I ever have had at 7000 feet. It wasn't altitude sickness, it was refeeding going hypokalemia becasue of altitude. Since then I have been in managed refeeding syndrome.

The BIG change occurred in February, I had COB[II] neurological startup and it was immediately noticeable. It had turned off 4 years before, the 5 star MeCbl was no longer adequate.

NOW I am at 10 mg of MeCbl per week from 210 mg, and is working the BEST I have ever had and have caught up on the refeeding syndrome, bottleneck style, shortage of delivered item to where needed. I am still titrating dose and I am trying various patterns and durations and amounts but I may find that as I grow more TCR I might need only a mg per week or something. I don't know. It doesn't happen overnight. It takes specific ways to "encourage" the TCR to be grown.

I haven't tried any HyCbl yet. I can do that by exposing a syringe to light as I have in the past. If the TCR is fully operating as it should, the spoiled MeCbl ought to be as effective as MeCbl and not cause acne.

It was RichVank, who, in private conversations, told me he thought it was the micronutrients. He was right, and very complicated. I learned how to absorb and use the micronutrients to rebuild the TCR, intentionally as it wasn't happening accidently and I know of nobody who has done so. Copper was a major and complicated bottleneck and that had to be fixed before I could grow the TCR. As far as I know I need every one of the nutrients on the list and if my body doesn't produce COB[II] my body had enough good enough MeCbl to have healing in the CNS in order to grow the TCR in the CNS and it also stores the COB[II] in the TCR and it is out of the serum and not vulnerable to being excreted by the kidneys which is a very expensive way to do business, without protecting the B12.

With the TCR for the COB[II] to sit in it would theoretically protected from the glutathione. The amounts of B1, B2, B3 and P5P appear to drive some things and for whatever the reason my body has been very poor at maintaining equilibrium. P5P caused high hematocrit after my testosterone level went up by 25% when my copper came up off the bottom. It can get very messy. Also, as copper went up which L-carnitine I had to use changed. Also, for entirely unknown reasons I have to switch from Metafolin to Quatrefolic or back as each in turn loses effectiveness to the other. Now if you look at the specifics, they form a pattern of responses that indicates a specific pattern of symptoms and responses. Some people have the same pattern to the letter, others have quite different patterns,. each one as specifically repeatable by people who match the patterns when it is mapped. So your reasons for copper problems may be the same or different than mine. I have been tracking my patterns since 1978 and have learned mine very well. That's why it is criteria based titration and customized delivery and everything. Lots of [people match the folate., with low doses of methylfolate increasing the number of deficiency symptoms and seriousness while healing some. If a person isn't aware that folate can produce deficiency and healing in different parts of the body at the same time will NEVER figure it out. That comes from from research that notred the problem and nailed it down in the early 90s as "Paradoxical folate deficiency" in THE HORSE and a horse getting folic acid., some healing and some deficiency symptoms. Be well.
@Freddd, you mentioned rebuilding your TCR receptors involved being able to learn how to absorb and use the various micronutrients. Could you share your method for "encouraging" the generation/regeneration of the TCR? It will of necessity be a personal road map for each individual based on tracking their patterns, however a basic understanding of how one goes about doing so would be most helpful. Thank you.
 

Freddd

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Salt Lake City
@CindyB

I will do that but to explain the logic is complex. The logic comes from pragmatic experience and may or may not be correct. There are a very limited number of studies about TCR deficiency. However with it, most ALL the apparent B12 paradoxes I know of make sense as does a multicompartment picture of folate effectiveness. I will post it as soon as I'm happy with the results. I don't want to risk it disappearing in cyberspace by hitting the sudden death key combination, accidentally because of neuropathy.
 
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My experience was that every dose under 4mg was terrible and miserable without letup if a person has healing going.. If I believed it would get worse with dose increase I never would have found that the USEFUL threshold is 4mg or so. I have never seen anybody not have trouble with those small doses. The longer the low dose and slower the titration the more sadistic it is
@Freddd although you describe your own experience, is there any published information which explains why taking large doses of methylfolate frees trapped folate? Alternatively, do you have your own interpretation of what is occurring at a biochemical level?

There are published papers which observe that methionine supplements can ease a folate trap although there is only speculation why this is so. Others argue there is a theoretical case to use biopterin. However I have not come across suggestions to use high dose methylfolate.

How much of your reported response depends on your own genetic make up? At one time I read you had Cblc and before that possibly CblD. However, more recently I read you have TransCobalamin Receptor (TCR) cytosis without mention of the Cbl diseases. What is your current diagnosis and how likely is it that others would not respond to your interventions in the way you have?

Kind regards.
 
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each increase of folate increased need for potassium
@Freddd
It is known that increasing the dose of MeB12 can increase the need for potassium. (Some say it happens from the increased generation of red blood cells. Other talk about aldosterone getting dumped which causes the kidneys to dump potassium.)

However, do you know why increasing folate (you metnioned "folate") causes a greater need for potassium? I know B12 may need more potassium but why would folate?
 
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@Freddd
Hi Freddd,
I have been lurking in the shadows reading with great interest about your protocol and struggles that you have faced. All my life i have issues with having no energy, being lethargic, poor muscle growth, poor sleep, depression and anxiety issues, panic attacks and palpitations. Doctor tests have always come back fine except for high blood serum b12 levels and on occasion high hemoglobin. The result was that i have been feed many types of antidepressants over the years and i also believe that some of these have affected certain snp's etc. About 2 years ago i embarked on genetic testing and found issues with mtrr (recycling b12 ) mmab (adeno b12 function), vdr (vitamin d receptors), comt (neurotransmitter breakdown), mthfs and mthfd1 (folinic acid conversion)
I went to a natural doctor and tested me for Pyrolles and they gave me a list of vitamins that i should use. these included SAM-e, B6, Zinc and B12 (my b12 blood serum was over 2000 at the time) prior to treatment. However i could not handle the B12 so i stopped using it. Fast forward a year or so later i tried again. I noticed this time i was sleeping better and felt better all round..this lasted 3 days than i was hit with a very bad experience where my heart went nuts, my vision went dark and i thought i was going to die. This scared me off b12 well and truly. It wasn't until i read about your protocol that i realized that this was actually low potassium however during that time i went back to the doctor and they prescribed another lot of antidepressants. I believe this was my downfall as they have given me a pressure in my head that seems to come and go and has been ongoing for over a year now despite me not being on them any more.
After reading about your protocol i was determined to get through your protocol for once and for all so i stuck it out. After a few sleepless weeks and start up symptoms i made it through the other side. This is now where i need to figure the final pieces out.
I have been supplementing with AD12, PQQ and coq10 and atp for the past few months. I am now at the stage where i don't notice a dip during the day like i used in regards to energy. I also don't notice a difference if i miss a dose of AD12.
This is where it gets tricky for me. I have experimented various ways of this and i seem to do best on injecting (IM) hydroxocobalamin 2 days out of 3 as well as injecting MB12 every day. If i do not inject the HD12 i find i lose all water retention in my muscles and my whole body shrinks and i feel weak. However if i don't dose the MB12 everyday the brain fog returns as well. To me this doesn't make sense but it appears to work. Also SAM-e for me appears to be ok in low dosages. If i take 200mg for 2 days i am ok however if i take on a 3rd day in a row i get a breakout of eczema on my eyebrows and become irrational and moodset takes a dive. I personally believe this could potentially be due to a raise of my bodies Glutathinone levels as i too have tried taking glutathionine with bad results as well. The issue is that i do feel better initially on SAM-e as i don't seem to have as much head pressure when i do take it on the first 2 days but by day 3 i'm in trouble.
I did have the Neurological awakening experience when i did start taking methylfolate however i did notice something strange the other week. I had been to the gym and had taken a supplement which contained amino acids and at dinner i took my muilti vitamin tablet, vitamin a & e and iron supplement which does contain folate and b12 and about half hour later i had another "awakening" experience. Since than i have not been able to repeat this however i have noticed that taking the amino acids (BCAA's) around the time i take my muilti vitamin i don't excrete my riboflavin were usually my urine goes florescent.
Would you be able to comment on my where to go? I am kind of feeling a bit lost.
 
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After reading about your protocol i was determined to get through your protocol for once and for all so i stuck it out. After a few sleepless weeks and start up symptoms i made it through the other side. This is now where i need to figure the final pieces out.
I've been on a similar protocol and noticed my sleep deteriorates. Did this go away for you?
 
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It took about 1-2 weeks of not sleeping but I was good after that. It was a strange sensation of not being able to sleep but I still felt OK during the day.
 
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@KenJT

I too have much of the some symptoms that you have. Tests from the Mensah institute came back with undermethylation and pyrrole disorder for which I take pretty much the same supplement protoco. After about two to three weeks, something really kicked in. I became almost hyper-energetic, had trouble sleeping and almost had a sort of restless leg syndrome. It made me want to stretch my leg muscles. Thanks for the info about sleep deprivation. If the sleeplessness returns, I will plow through it.

I've wanted to take an at home Organic Acids Test, so I ordered one a few weeks back. In order to get good results, I decided to pause my supplements for a week before taking the test which threw me into depression. I've since resumed my supplements and it's been about 2.5 weeks on them. Over the last few days, I've started to feel a bit better, but not great. Hoping I get out of this hole soon.

Anyways, I should be getting the test results back soon, hopefully early next week. Can't wait to see it!