B-12 - The Hidden Story

Freddd

Senior Member
Messages
5,032
Likes
1,571
Location
Salt Lake City
Thanks for taking the time to reply Freddd.

I'm going to try and add in AdoCbl for a while, as well as gradually experimenting with l-carnitine and the other possible co factors. I'll report back in action few weeks and let everyone know how I'm going.

Hi Rosboy,

Often the combinations can be 3 or 4 or 5 items to work well so additional items are added. Balance is important.. I found that 500mg of l-carnitine was way too much for me. I started at 63 mg LCF. I titrated for a year to build up the carnitine and had various induced deficiencies while rebuilding muscles.
 
Messages
13
Likes
7
Hi Rosboy,

Often the combinations can be 3 or 4 or 5 items to work well so additional items are added. Balance is important.. I found that 500mg of l-carnitine was way too much for me. I started at 63 mg LCF. I titrated for a year to build up the carnitine and had various induced deficiencies while rebuilding muscles.
Ok, I understand what you are saying, but am a little confused by one thing.

To achieve the best results, you have mentioned (if I understand you correctly,

1. changing brands,
2. experimenting with combinations
3. titration.

Is there any way to know which of them to do at a given time, or is that all down to experimentation listening to how my body replies?

Looking at the symptom list you sent, it seems like MeCbl - AdoCbl – L-carnitine fumarate are key for me, and I'm going to not start introducing the second two.
 

CCC

Senior Member
Messages
432
Likes
556
@Freddd and @rosboy

This protocol was life-changing for my son, and I will forever be in Freddd's debt as a result, but please remember everyone is different.

Our experience is:

1. We need AdoCbl more than anything (but it took months to build up to taking any without extreme nausea).
2. SAMe and LCF make my son very, very tired. We've tried several times and they've been a disaster.
3. ALCAR is turning out to be essential in so many ways
4. On top of a Jarrow Bright once a day, we also needed a lot of extra B2 for 2 or 3 months. The evidence was (a) feeling better and (b) whether excess B2 appeared in the urine about 45-60 minutes after ingestion. It didn't appear at all for 6 weeks in our case. Note that some people can't tolerate extra B1 or B2. Freddd is one of these.

See also @Hip's thread on PEM busters to help manage the after-effects of mowing the lawn. For us, ALCAR is looking like the thing we need.

Here are some other points in case you have the energy to read:

1. We went to the B12 transdermal oils as soon as we had built up to about 15mg of B12 in each form sublingually - approximately 1 slurp of oil = 14-20 mg B12 (experience). (see b12oils.com)
2. We started more slowly than you did, but built up quickly to about 15mg of mB12 a day. Methylfolate needs vary from about 3.6mg (typical) to 15 mg a day (rare, but it does happen under stress)
3. We ended up needing anything from 24 to 86 mg of AdoCbl a day, every day for more than a year (so 1 slurp of the oil to as much as 4 slurps each day at the peak). We still need at least 1 slurp of the oil a day, or it's 3 x 8.6 mg AdoCbl sublingual tablets in the afternoon.
4. For us, a baseline of B2 + folinic was better than straight mB12 all the time. We now use a combination over the day - 5mg mB12 on rising, B2 + folinic through the day, mB12 before going to sleep - then plus extra if going out. (BE CAREFUL - some people can't tolerate any folinic - it all has to be methylfolate)
 

Freddd

Senior Member
Messages
5,032
Likes
1,571
Location
Salt Lake City
Hi CCC,

Getting the right carnitine at the time is trickier than I was aware almost a decade ago. At that time it was about 90% LCG and 10% of people needing ALCAR, some percentage both and many also L-carnitine freebase liquid. It also changes with at least variation in copper levels.

The Deadlock Quartet plus
  1. MeCbl, L-methylfolate, [SAM-e, methionine]
  2. AdoCbl, L-carnitine [biotin, TMG, D-ribose]
And there are multiple layers of amendments including each of the traceminerals for at least some tissues, and many of the metals have competitive absorption and interfere with each other all over the place.. And all the basic things, custom titrated B-vitamins and so on have to balance for the person.

And what is another variation is that as some things change, the remaining items may change. As soon as I reach last folate deficiency for me (MCV) it turns out that copper level is the next thing to affect MCV.

I'm one of the people that can't tolerate even tiny doses of folic or folinic. Watch out for trace mineral deficiencies. It took 6 years for copper deficiency to be recognized , by me, from all the damage it was causing. The doctors rarely recognize trace mineral deficiencies.

The method of chasing all the refeeding syndrome induced deficiencies has served me well. Everybody's pattern of quick symptoms can be different and some sequences have many variations. A daily symptoms change diary is invaluable.

I would like to remind you of a specific pathway. In the process of making ATP (AdoCbl) there is an internal methylation cycle starting with TMG instead of methylfolate or SAM-e and shifting some of the methylation inside the ATP process can change how things feel considerably.

Good health to you.
 

Sundancer

Senior Member
Messages
557
Likes
1,339
Location
Holland
such good info here, when I started with adenosyl I found getting some more muscle strenght, being able to walk for some minutes wich I could not do before.
But may try the twice a week a higher dose, see what it breings me.

regarding brands, I'm very sensitive for additives and found thes too ( not for those wh cannot handle lactose!)

https://nl.iherb.com/pr/Superior-Source-MicroLingual-Methylcobalamin-B12-5000-mcg-60-Tablets/26992
https://nl.iherb.com/pr/Natural-Factors-B12-Methylcobalamin-5-000-mcg-60-Chewable-Tablets/15729

the one from natural factors is clearly stronger then the other one. ( were i did not get dizzy on 2 mg of SS, I did get dizzy on 2mg of natural factors. So I'll keep this brand.

regarding healing, I find the female parts are less sensitive, I regard that as a good sign, my hair stopped falling out in copious amounts and is even starting to regrow nice new hair ( grey though :lol:, I've become very grey the last years) and one little halfmoon has appeared on my right index finger. Ribbing of nails has lessened considerably. So I'll go on on this path, it does hold a key, whether that's the only key remains to be seen, but every stepup in life quality is welcome
 

Freddd

Senior Member
Messages
5,032
Likes
1,571
Location
Salt Lake City
such good info here, when I started with adenosyl I found getting some more muscle strenght, being able to walk for some minutes wich I could not do before.
But may try the twice a week a higher dose, see what it breings me.

regarding brands, I'm very sensitive for additives and found thes too ( not for those wh cannot handle lactose!)

https://nl.iherb.com/pr/Superior-Source-MicroLingual-Methylcobalamin-B12-5000-mcg-60-Tablets/26992
https://nl.iherb.com/pr/Natural-Factors-B12-Methylcobalamin-5-000-mcg-60-Chewable-Tablets/15729

the one from natural factors is clearly stronger then the other one. ( were i did not get dizzy on 2 mg of SS, I did get dizzy on 2mg of natural factors. So I'll keep this brand.

regarding healing, I find the female parts are less sensitive, I regard that as a good sign, my hair stopped falling out in copious amounts and is even starting to regrow nice new hair ( grey though :lol:, I've become very grey the last years) and one little halfmoon has appeared on my right index finger. Ribbing of nails has lessened considerably. So I'll go on on this path, it does hold a key, whether that's the only key remains to be seen, but every stepup in life quality is welcome
Hi Sundancer,

Your gray hair might be telling you, along with your fingernails, falling and/or breaking hair that you may need copper. Zinc also perhaps, but too much zinc prevents copper absorption. Keep zinc below 50mg/day and take it at a different meal or time as copper.

My experience was that when copper was deficiency so were many of the other trace minerals.

Carnitine helps turn on healing in muscles, bones, heart muscle and neurology. It is a critical member of the deadlock quartet. The four items, MeCbl, AdoCbl, l-methylfolate and l-carnitine (best for specific persons response) are what allow the methylation-ATP functions in making cells, ALL CELLS. The differentiation are in things like copper, vanadium, manganese, molybdenum, lithium chromium GTF, and are not manifested until the cells actually get started with the DQ in balance and working well, then the places it breaks are on trace minerals.

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

"Following are the groups of induced deficiency symptoms when starting with the Deadlock Quartet (AdoCbl, MeCbl, Metafolin, L-carnitine fumarate).

Version 2.4 11/05/2017 A work in process, incomplete, limited testing, people come in many variations, use at your own risk.

Copyright 2017, Frederick D. Davis, aka Fred Davis, aka Freddd, copied from original manuscript.

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

Group 1 – Hypokalemia onset. Often called “detox”. 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, intense sudden dizzy spells correctable potentially in minutes with water with potassium gluconate for instance.

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

Group 2a - Both hypokalemia and l-methylfolate deficiency

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

Group 2b – Either or both hypokalemia and l-methylfolate deficiency

Headache, Increased malaise, Fatigue

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 anythjing 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, persistant and resitant 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 deades becasue large folate doses can lower MCV without MeCbl. There is a long history to this.

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. Well after all other observable copper deficiency symptoms showed up, a lower value as copper contibued to fall, MCV suddely went over 100 after it had fallen to

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 insufficiency.

Arthritis swelling and pain, can be reduced by Boron

Contribution to fatigue, neurological effects.

Runaway tooth decay

Loss of calcium in bones and teeth

15 Surprising Benefits of Boron

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.

Group 9 - Vanadium insufficiency

Deficiency of vanadium is poorly known or recognized. It affects tissue permeabilty like insulin.

Group 10 - Lithium insufficiency Non ionizing forms, small micronutrient doses

Lithium allows better permiability of B12 in nervous system memberanes. Many people appear to have trouble affecting some B12 deficiency symptoms with B12 even

Group 11 - Iodine insufficiency, especially needed for those who don't eat iodized table salt and/or seafood.

Group 12 - L-carnitine XXXXX, That can be L-carnitine tartrate, L-C Fumarate, L-C freebase, ALCAR and others but usually works only one kind at a time.

neuromuscular pain, feeling of growing inflammation, fatigue, mood changes, sleep problems. These are quick occuring symptoms and they can spread to the complete 4 way deadlock over time.

It appears that for most people in this refeeding situation many may respond to only one form of l-carnitine, intially fumarate or ALCAR and sometimes also including a freebase form. However, as the deficienciencies change, the pathways appear to change and the carinitne that worked so well no longer does and the form is some entirely different one, like tartrate or some other variation. A person may need to trial half a dozen forms. A response is usually clear the first day or occasionally several days with micro doses and titration. And it can change based on what else is corrected."
 

Sundancer

Senior Member
Messages
557
Likes
1,339
Location
Holland
thanks @Freddd , I'll try the copper next.

I know I'm deficient on prob all minerals. But I've had frightening experiences with minerals, so i tread very carefully.

Zinc gave me an absolute crash, almost back to bedbound 2 years ago, but will try again with a minidose of half a mg to start with.

calcium made me ill, nauseous two years ago, but will try again

selenium i tried some months ago, 150 mcg gave something that felt close to heartattack, now on 25 mcg, tried 50 mcg but that was to much.

tried molybdenum 2 weeks ago...still not recovered, renewed sickness in the night, nauseous, palps etc. very small dose ( dipped toothpick in the powder)

Boron went well though, no problems at all, magnesium and potassium ditto. Wouldn't know what to do without them.

and the gut is still recovering from my try on ubiquinol, now on a probiotic that helps the gut, should have done that sooner. It's quite a puzzle but still am hopeful and grateful for things that do work. And takes lots of time because everything has to be tried on its own

the carnitine gives me clearly more energy/ better functioning, but as it is tropical here I'm still pooped... But it also makes stools softer ( thats welcome) and a little burning sensation, I suppose that I'm getting rid of toxins that way, so I'll wait until that burning feeling has gone before I'll take more.

I'll print the text of the link you added, useful stuff!
 

Freddd

Senior Member
Messages
5,032
Likes
1,571
Location
Salt Lake City
Hi Sundance,

It sounds like each of those thongs added caused another round or refeeding like zinc starting up and needing more methylfolate and or potassium. It often comes back to each of those a dozen times as onmes adds in each little part like molybdenum, or maybe the zinc was blocking the copper. It's the pattern of several items that usually determines what you need next. I tried a new (to me) VSL #3. It is sold from the refrigerator in the pharmacy at Costco and other places. It's expensive stuff (almost $1 per cap) but also the first one that has actually helped me very noticeably.

"the carnitine gives me clearly more energy/ better functioning, but as it is tropical here I'm still pooped... But it also makes stools softer ( thats welcome) and a little burning sensation, I suppose that I'm getting rid of toxins that way, so I'll wait until that burning feeling has gone before I'll take more."

The carnitine is most effective taken on an empty stomach. It can in the beginning give some stomach discomfort but "burning" I've never heard of. You know that "energized" feel"? It's import, it is the feel of cell formation. Stopping and starting carnitine and methylfolate for that matter, appears to cause stop and start healing and each time it starts up on the debris of previous stops it doesn't work as well. Titrate, but please, not all the stop and start of half the compartments. that isn't good. Each of these things usually will do nothing if it isn't being used and is felt. On the other hand if these items have a big effect it tends to indicate it is starting a lot of cell starts and is stalling, usually on day 3 after starting the item it's typically refeeding syndrome symptoms.telling one exactly what is needed next.

If you learn to follow those clues a lot of healing can happen. It is a game of skill. The thing that usually causes the most refeeding syndrome symptoms is a methylfolate dose under 4-8 mg and then the total number of symptoms can start improving rapidly and low potassium symptoms. Each time something is added that causes often familiar low potassium symptoms a different branch of cells are getting made. So low copper for instance can cause serious neurological symptoms and varicosities and gray or white hair earlier, brittle hair, brittle nails, vertical ribs on nails, and gum shrinkage and color.

Each thing that is added tells you what to add next to the combinations. I find 5-10 days for each cycle until you run out of quick responding symptoms. Basically at first one can be guided by very obvious symptoms, especially visible lesions and such on the skin, nails, painful or sore areas in the body etc. I started this with 200+ responsive symptoms, many of them fast symptoms. Now I have one intermittent external symptom and the other things some almost gone pains, and 90 day things like red blood cells. Copper deficiencies affect MCV after all the effects of MeCbl, AdoCbl, l-methylfolate l-carnitine, and B6 are sufficient. Then between 60 and about 80 for instance, bracketing the low range limit, MCV can vary from <93 to >100 but the ranges may vary considerably for different people. It's gives a 3 month average of copper something like A1C for glucose. When one is working on L-methylfolate, until you reach the "last folate deficiency" the MCV shows relative quantity of days of enough mfolate to not enough. When it is getting enough of everything else the MCV falls to "normal". For those who have high MCV or MCH (usually move together) these can give lots of clues.

.
 

Sundancer

Senior Member
Messages
557
Likes
1,339
Location
Holland
Hi @Freddd

It sounds like each of those thongs added caused another round or refeeding like zinc starting up and needing more methylfolate and or potassium. It often comes back to each of those a dozen times as onmes adds in each little part like molybdenum, or maybe the zinc was blocking the copper. It's the pattern of several items that usually determines what you need next.
yes, thanks to you I've learned about refeedingsyndrome and it makes sense, even though I still have to learn a lot about the finer points. The zinc debacle however was years ago, before I was into B12 and its buddies.

You know that "energized" feel"? It's import, it is the feel of cell formation. Stopping and starting carnitine and methylfolate for that matter, appears to cause stop and start healing and each time it starts up on the debris of previous stops it doesn't work as well.

yes, thats a good way to put it, energized feel:), I wasn't planning on stopping b12, folate or carnitine, I'm happy with the overall effects.

Plus, effects ( whether bad or good) need not always be related to refeeding-syndrome.

I think the scary reaction on selenium has to do with the thyroid, which goes too fast ( is under investigation now).

The reaction on molybdenum I clearly recognized as detoxing problem. Liverphases are out of balance here, I do not know whether Molybdenum kicked phase 1 or hung on the brake of phase 2. But the reaction was very clear, so the molybdenum goes to the back of the list.

burning stools I had before, I do not know how the carnitine triggered that one ( its finished now) but it did and is not OK as the toxines get into my bloodstream and make me ill again.

On the other hand if these items have a big effect it tends to indicate it is starting a lot of cell starts and is stalling, usually on day 3 after starting the item it's typically refeeding syndrome symptoms.telling one exactly what is needed next.

you mean that in general you can expect a ' backlash' 3 days after you've started something that kicks the system a little further? eh...( english is not my motherlanguage) that refeeding syndrome in general starts 3 days after you added a new component which kicks thee system into making new cells somewhere?

The thing that usually causes the most refeeding syndrome symptoms is a methylfolate dose under 4-8 mg and then the total number of symptoms can start improving rapidly and low potassium symptoms. Each time something is added that causes often familiar low potassium symptoms a different branch of cells are getting made

I'm on 400mcg of folate now, potassium shortage started when I went form 300 to 400 mcg. Need about 30% of daily recommended intake now. I find that the dizzyness of methylcobalamine is receding so soon 'll add another half mg to that.

I did not get your last paragraph, too technical ( yet) but my MCV is 85 /87 the last years.

I'll just go slow and careful, with low doses adding what the body can handle. First I'll wait until temperatures here are normalized...pffff so hot overhere, happily we had a big rain and thunder yesterday, but now it's again to melt into your chair


The zinc btw, my former naturopath told me that it is a reaction of a severely overburdened endogenous opioid system. I'll soon try it again, with mighty small doses

thanks again
 

Wolfcub

Moderator
Messages
1,240
Likes
3,105
Location
SW UK
Oh....My.....Gosh!
And here was me thinking I'll go to the health food store and buy a strong B12 tablet tomorrow, and try that.

It is obviously a really complex situation and I am put off quite honestly from trying it because I can't get my brain around the science/side effects/ tolerance....etc. Don't want to make myself feel worse.

But thank you everyone for this detailed information. Now I don't know what to do for the best.
 
Messages
13
Likes
7
Oh....My.....Gosh!
And here was me thinking I'll go to the health food store and buy a strong B12 tablet tomorrow, and try that.

It is obviously a really complex situation and I am put off quite honestly from trying it because I can't get my brain around the science/side effects/ tolerance....etc. Don't want to make myself feel worse.

But thank you everyone for this detailed information. Now I don't know what to do for the best.
Hi Wolfcub. Don't give up.

I only came here recently, and stumbled across the Freddd protocol. I found it quite difficult to get my head around it...and honestly I still don't! I found two posts that help me get started.

http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/#post-2568
http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-2#post-2587

I started there by just buying the supplements that were categories as "Absolutely critical minimums for basic healing" or "Essential". I then started taking them. As I was impatient, i studily didn't do bother with "start slow and go slow"...I went the full hog straight from the start. Luckily, that has been very successful for me, and I've seen good results. I then came back and asked some questions, and found it easier to understand what was being offered. I made changes, and feel better again.

You may not have the same experience, and may suffer the side effects others do here...there's no guarantees unfortunately.

Best of luck with whatever you decide.
 
Messages
13
Likes
7
Ok, I understand what you are saying, but am a little confused by one thing.

To achieve the best results, you have mentioned (if I understand you correctly,

1. changing brands,
2. experimenting with combinations
3. titration.

Is there any way to know which of them to do at a given time, or is that all down to experimentation listening to how my body replies?

Looking at the symptom list you sent, it seems like MeCbl - AdoCbl – L-carnitine fumarate are key for me, and I'm going to not start introducing the second two.
I've added AdoCbl – L-carnitine, as well as SAMe. I feel like I have taken another step up, which is great. I'm not going to do as Freddd suggested and explore different brands of MeCbl so see how they work for me.

I've run my 23andme results through Genetic Genie, and come up with the following results. Would anyone suggest I take anything in particular for these results:

MTHFR C677T +/-
MTHFR 03 P39P +/-
MTHFR A1298C +/-

VDR Bsm +/-
VDR Taq +/-
ACAT1-02 +/-
MTR A2756G +/-

MAO-A R297R +/+
MTRR A66G +/+
CBS C699T +/+
 
Messages
38
Likes
15
Getting the right carnitine at the time is trickier than I was aware almost a decade ago. At that time it was about 90% LCG and 10% of people needing ALCAR, some percentage both and many also L-carnitine freebase liquid. It also changes with at least variation in copper levels.
@Freddd What was the original rationale for carnitine fumarate rather than carnitine freebase? Do you still prefer carnitine fumarate?

Sorry to ask so many questions but can you say a bit more about the link between copper and carntine as I can't find anything in the literature when I Google for this although it sounds interesting.
 

Freddd

Senior Member
Messages
5,032
Likes
1,571
Location
Salt Lake City
@Freddd What was the original rationale for carnitine fumarate rather than carnitine freebase? Do you still prefer carnitine fumarate?

Sorry to ask so many questions but can you say a bit more about the link between copper and carntine as I can't find anything in the literature when I Google for this although it sounds interesting.
After I found it takes about 10 brands of MeCbl used sublingually for 45-120 minutes to be really outstandingly good and 1 with no effect at all and a bunch that do a lot less than the best ones, I have tried multiple forms of lots of things.

So I tried the much talked about ALCAR. It did nothing at all. Then LF-Tartrate. It did nothing. Then a 4 variety combo pack and it did nothing. Then I tried one of the four, LC-fumarate as it was specified as the variety that actually transfers fat into mitochondria for making ATP. Boy did I take off like a rocket. I had to reduce dose from 500mg to 64mg (1/8 of a 500mg). That filled me with energy for 9 months. Then 128mg lasted severaL months, 256mg lasted several weeks and the jump to 500 mg lasted a few days. Going to 1000mg at once or 500mg twice a day made no difference.

Then about 6 months ago suddenly it was like I wasn't taking an effective carnitine. I hadn't given away some varieties and I had never tried freebase capsules (Jarrow) and they worked but I had to have 2 a day. each 12 hours. on an empty stomach which is easier once per day 1 hour before first meal. Then I tried LC-Tartrate and it was most excellent. The change appeared to occur when I reached a certain point in restoring copper. I tried several brands and varieties of copper before I found an effective one that didn't irritate my stomach which also lowers absorption.

Several times now for me and 3 other people I often compare notes with have had whatever brand and variety of methylfolate loose effectiveness signaled by return of various skin lesions and lack of cell formation, I and the other three change to a different brand or variety (Deplin, Quatrefolic, various generics of slightly different salts) for a day or two, it restores the potency of the original methylfolate.

Why the need for a different form occurs I don't know.

All these things are based on experiences of mine, multiple times, other people 1 or more times each. As there are often many possible pathways perhaps after a while the minor pathways sometimes lose effectiveness and a different variety cleans it out or something. This is purely pragmatically following the slow refeeding syndrome hypothesis. It has given me correct answers most of the time for 15 years. So I followed the "quick" symptoms, epithelial cells formation, energy and moods and many cycles were about 5 days each, and I knew most positive answers in hours. Long answers take 3 months, like A1C or MCV, and after B12 and methylfolate reach maximum effect on MCV, copper then influences MCV (Mean Corpuscular Volume) instead. with a serum copper of 82 to reach MCV < 93.0. Copper deficiency can be a cause of macrocytic anemia. At around serum copper of 60 my MCV > 101.0..

Copper levels may very well affect some pathways and not others.I have found essentially nothing in literature. There are mentions going back to the Adelle Davis book "Let's Get Well" and maybe others. And a reminder, zinc can cause copper shortages, verified at 200mg/day of zinc and some suspected cases as low as 50 mg/day.

Iron competes for absorption too.
 
Messages
4
Likes
7
I’m sorry to bud in to this conversation, but I really need some advice. Long story short, I cold turkeyed off of xanax three years ago and I’m still suffering. I got pregnant a year and a half ago and am still breastfeeding twice a day. The hormones were and currently are still horrible. I had severe depression during the entire pregnancy as well as after. I haven’t been the same since I started/got off of xanax. This benzo seems to have destroyed my brain. I’m definitely in a protracted state at the moment. The hormone changes are also getting to me. Extreme mood swings, guilt, regret, etc.

Throughout this whole ordeal I’ve had low b12. It was 200 a few years ago and raised it to 300/400. I also had low folate, but was able to increase that one with diet alone. Before xanax, I used to take 2500-5000mcg of methyl b12. I ate 2-3 cups of spinach regularly for my folate intake. At that time in my life, I was so happy and energetic. I really didn’t have anxiety or depression at all. When I lost my job, I ended up on xanax, and the story began.

I found out that I have two copies of the C677T variant for mthfr. I addressed my b12 during the post xanax period with meat and cheeses. I tried doing cycanocobalamin injections and they made me hyper/agitated beyond belief. Neither of these methods has brought up my b12 past 400. I just recently resumed taking methylcobalamin (250-500mcg) to start. It makes me tired, agitated, hyper, but filled with energy. It cured my depression for two days when I started, but then the symptoms returned. Muscle soreness, nausea and headaches also followed. I tried taking potassium, but it made my depression so much worse. Methylfolate at ANY dose actually makes my depression so bad that I’m suicidal. So I’m clearly avoiding that one, and eating limited greens to have some intake at least.

I also forgot to mention that I get broken sleep because of my 5 month old daughter. I could sleep for days if she would let me, but that won’t be happening anytime soon. My sleep is irregular anyways. I wake up multiple times a night, but have no problem falling back to sleep.

I pray to God that b12 is one of my main problems, besides the lack of sleep. I’m positive that I’ll be in a better state once my little one sleeps longer and my hormones balance out. I’m over the pins and needles, numbness, brain fog, extreme anxiety and depression. I appreciate any advice you can give me. Thank you so much for your time.

Bree
 
Messages
29
Likes
19
@Bree17 I didn't do well on methylfolate either. Just recently I decided to try folinic acid and like quite a few on here do very well on it. I have source naturals megafolinic cut it in quarters and put the quarter between gum and cheek. The total anemic feeling like a massive void inside and the wind could push me over is gone.

I have strangely responded very well to ALCAR it has brightened my brain considerably. It helps my daughter too. Copper is one that has a really positive effect on me at times as well. Thanks @Freddd and everyone else on here.
 
Messages
5
Likes
6
hi everyone.

@Freddd i discovered your protocol and try to follow it. first of all thank you for your constant support here on phoenixrising.
i have some questions as i am not sure how to apply your protocol properly. sorry for asking as i am certain you answered similar questions a hundred times here but i have a hard time understanding all the information here due to cognitive deficiencies + being exhausted quickly + english is not my mother tongue + theres several thousand posts here.

currently i am taking:

basics:
- vitamin d i.u. 8000/day
- vitamin c
- vitamin b complex (including 400mcg quatrefolic)
- grape seed extract 400mg/day (antioxidant)
- coQ10 200mg/day
- magnesium 400mg/day

additionally i ordered 5 star jarrow methylb12 5000mcg according to your protocol. i started 2 days ago taking it.

1st day 1x5000mcg for 45-120minutes. no effect at all. maybe i didnt do it properly the 1st time. not sure.

2nd day 1-2x5000mcg (dont remember exactly). after like 45 minutes i noticed getting very squirrelly/jittery and basically was running around like an idiot. it wasnt very pleasent but it was ok. it lasted for maybe 1h20m.

3rd day 1x5000mcg in the morning. jittery again. maybe little less effects than on day 2. waited till effects disappeared and did another 5000mcg. again jittery.

as i unerstood you that means that i basically have a methylb12 problem/deficency in my body because if everything was fine with b12 in my body supplementing b12 wouldnt have ANY effect on me at all, right?

how many times should i do 1x5000mcg every day? did you say 4-6 times somewhere? am i supposed to increase the doses to like 4x5000mcg at once? thats where i am not sure.

i also think about cutting a 5000mcg in half to safe money. i think you said somewhere that around 125mcg being absorbed is enough to start healing? hence even 1250 for 45 minutes would be fine, right?

the only effect im noticing so far is being jittery + one of my symptoms (feeling my legs/pain in my legs although sitting on a chair) disappeared in the 1h20m time frame while being on b12. do u have an idea how long it might take for something to heal? do i need another supplement right now or can i just proceed with the mb12 for now and see what happens next?

my symptoms luckily reduced over the years but some are not getting better. my symptoms right now are:
- PEM after mental work
- lower back pain
- my body being tensed up especially my back
- short term memory, long term memory, thinking in general, concentration, focus
- headache
- not being able to handle alcohol
- waking up stiff and having pain in my whole body
- being exhausted physically very quickly
- pain in my legs when walking a stair with like 20 steps

i have more but i cant remember them right now.

i will receive some 5MTHF quatrefolic soon. should i add some of that as i am curretnly only using 400mcg 5MTHF from my b complex?