Active B12 Protocol Basics

[chrism]

Years ago I tried Freddd's protocol and was getting good results. I primarily stopped due to not having doctor access, among other things. Not that anything would go wrong, but I am cautious in nature.

I'm interested in starting again and am very curious about how one determines the balances of non-B vitamin supplements.

I've seen a lot of talk over

• Magnesium
• Zinc
• Copper
• Calcium

However, the balance and impact of these seem to be less figured out.

I know Rich was big into getting tests done (blood, stool, etc.) however not all doctor offices offer all of these tests. Even then, I have difficulty trusting the tests. I always show as healthy in B12 and Folate, but when I tried the protocol I had LARGE positive impact. I know Freddd has less faith in the "healthy" levels of tests as they could be skewed by years of bad assumptions and data on what optimal health is.

Are there tests that are easily ordered and have high accuracy? Or are we just in a stage where trial and error what needs to be done when testing isn't full proof?

 

[TinaT]

BASIC VITAMINS AND SUPPLEMENTS
Version 1 - 07/23/09
Version 2 - 05/08/11

I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. We are trying to maximize the probability of healing.

All needed products are available at www.iherb.com at competitive prices about half of local health food store prices and good service. Using the coupon code RED843 will get a person $5 off their first order. This also gives me a $5 credit I use to supply these vitamins to people unable to afford them and further research.

Absolutely critical minimums for basic healing.

Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0

Enzymatic Therapy 1mg B12 infusion, under upper lip or tongue for at least 45-120 minutes for best effectiveness http://www.iherb.com/Enzymatic-Thera...lets/2119?at=0

Solgar Metafolin 800mcg http://www.iherb.com/Solgar-Folate-Metafolin-Folic-Acid-800-mcg-100-Tablets/13961?at=0


REVISION - 05/08/11

At this time I can no longer suggest any folic acid or folinic acid containing supplements for people in general. If a person has trialed folic/folinic acid containing supplements and compared it to trial of Metafolin for some months on each with several cycles and found no difference, then the folic acid would appear to not be causing paradoxical folate deficiency. As this is a very real risk for many who need b12 and folate I suggest using Metafolin only. In myself and others, food folate and food extract folate may affect one the same as folic/folinic acid and cause paradoxical folate deficiency. This deficiency reaction causes symptoms that is usually identified as "detox".

CAUTION - THESE TWO SUPPLEMENTS CONTAIN FOLIC ACID

Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Country-Life-Active-B-12-Dibencozide-3000-mcg-60-Lozenges/1637?at=0

Jarrow B-Right b-complex, 1 capsule twice a day http://www.iherb.com/Jarrow-Formulas-B-Right-100-Capsules/110?at=0

THE FOLLOWING SUPPLEMENTS DO NOT CONTAIN FOLIC ACID

Source Naturals Dibencozide 10mg under upper lip or tongue for at least 45-120 minutes for best effectiveness, from 1 per day to 1 per week http://www.iherb.com/Dibencozide-Sub...ets/21571?at=0

B-complexes containing methylfolate or Metafolin instead of folic/folinic acid and methylcobalamin instead of cyanocobalamin

Douglas Laboratories B-complex with Metafolin
Pure Encapsulations B-complex plus with Metafolin
retailers vary, may become available at iherb

POTASSIUM -

Potassium is far more critical than I realized with version 1 of this page. Most people starting the active b12s and Metafolin will have low potassium symptoms which can include unusual spasms, muscle weakness, mood and personality changes, nausea, heart palpitations and a long list of other possible symptoms which makes it difficult to identify. Many people misidentify low potassium symptoms as "detox". This is a dangerous mistake to make.

Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, mid-range, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.2.


Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This kind of product is available in many supermarkets.

Essential, usually needs supplementing
Zinc - 50 mg
Calcium/magnesium supplement
D3 - 3000-5000 IU total
A&D from fish oil, 10,000-(400-800-1000 D) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
Vitamin E, Gamma complex http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0
Vitamin C 4000+mg/day

Possibly Critical Cofactors, add after initial stages, any number of these in any combination may be required for maximum effectiveness

SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood

TMG - enhances SAM-e, methylb12, l-carnitine-fumarate

L-carnitine fumarate, works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood

Alpha Lipoic Acid - enhances l-carnitine-fumarate and adenosylb12

D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

Additional possibly helpful cofactors

Selenium
Lecithin
Chromium GTF
many other supplements

THINGS TO AVOID

Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it. This then causes the methylfolate to be dumped from the cells in a process called the "methyl trap". This leads to a high serum folate but a low cellular folate causing a severe folate deficiency with increasingly severe symptoms over time. This is often mistakenly called "detox". NAC can produce these same folate and b12 deficiencies also misidentified as "detox".


DEEP NEUROLOGICAL HEALING

The most frequent neurological problems are peripheral neuropathies, often in characteristic stocking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons. Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help. Low CSF levels of cobalamin along with elevated CSF-MMA and/or CSF-Hcy is associated with CFS, FMS, ME, Parkinson's, MS, ALzheimer's and a number of other neurological diseases.


B12 INJECTIONS
The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way. In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak. Methylb12 solution must be prepared under a deep red (fast orthochromatic film) safelight. The vials must be wrapped in foil to exclude all light. The syringe must be wrapped in foil preventing all light exposure. A small amount of exposure to room light will cause photolytic breakdown to hydroxycbl-aquacbl often causing acne type lesions and lack of effectiveness.


1. Single or multiple injections per day to 5mg methylb12, each injection. ZONE 2, fully equivalent to sublingual tablets, did not stop continued neurological deterioration and progressive numbing of feet of 15 years duration.
2. Single 7.5mg methylb12 injection per day stopped the progressive numbing of feet of 15 years duration. ZONE 3A1
3. Two 7.5mg methylb12 injections per day caused some small reversal of numbing of feet and of neuropsychiatric symptoms. ZONE 3A1
4. Four 7.5mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2
5. Three 10.0mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2
6. Two 15.0mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2

Regarding options 4,5 and 6 above, which frequency is required for any given person may depend on mb12 solution concentration and individual absorption dynamics.
Read more at http://forums.wrongdiagnosis.com/showthread.php?p=289922&posted=1&ktrack=kcplink#post289922



Read more at http://forums.wrongdiagnosis.com/showthread.php?p=289922&posted=1&ktrack=kcplink#post289922

Methylfolate is causing flu like symptoms, sore throat, miserable. Seeking health has a folonic acid. Would you please share what symptoms would indicate a folate deficiency?

Also, does this low potassium problem (with methyl B12) continue through the treatment, or just in the early stages, like first few weeks or ???

 

[dannybex]

Methylfolate is causing flu like symptoms, sore throat, miserable. Seeking health has a folonic acid. Would you please share what symptoms would indicate a folate deficiency?

Also, does this low potassium problem (with methyl B12) continue through the treatment, or just in the early stages, like first few weeks or ???

Although it may seem connected, it's highly unlikely the folate is causing flu or sore throat symptoms. I spent years thinking this supplement or that one was specifically causing 'this' or 'that', when in hindsight it was often added stresses, etc.. 'Overthinking' things is very, very common w/ME/CFS.

Here's a good thread from a few years back where some members discuss this supposed 'paradoxical' folate deficiency (which it's worth noting, is a term Fred came up with):

https://forums.phoenixrising.me/threads/methyl-trap-paradoxical-folate-deficiency-or.60865/

As for potassium, it shouldn't be necessary for-ever at all. Depends on how much you're getting from your diet as well. Best of luck.

 

[TinaT]

I'm a bit new to Freddd's protocol so I have had a lot of catching up to do. Freddd I wanted to ask you for your thoughts on taking deplin, a much higher dose than the 800mcg are advocating. Is there a downside to taking mega high doses of metafolin if and only if it is well-tolerated?

Thanks for doing all this research and being a pioneer. I did Rich's protocol for several years, including the full yasko protocol for a year, both without success, so I appreciate the different perspective on methylation. I've spoken with way too many people that experienced vast improvement from the mega high doses to not realize that dose, form, and brand are all crucial factors to consider. I'd like to add that I think timing is also a big factor, and that I wouldn't mess with these high doses unless I had suppressed my baseline inflammation levels by taking LDN and getting to a toxin-free living situation. I am also considering going on valcyte, so methylation to maintain sufficient DNA/RNA synthesis to buffer the side effects is even more important (hence why I'm considering deplin versus 800mg metafolin in the first place).

Thanks again,
joey

What is LDN?

 

[TinaT]

Although it may seem connected, it's highly unlikely the folate is causing flu or sore throat symptoms. I spent years thinking this supplement or that one was specifically causing 'this' or 'that', when in hindsight it was often added stresses, etc.. 'Overthinking' things is very, very common w/ME/CFS.

Here's a good thread from a few years back where some members discuss this supposed 'paradoxical' folate deficiency (which it's worth noting, is a term Fred came up with):

https://forums.phoenixrising.me/threads/methyl-trap-paradoxical-folate-deficiency-or.60865/

As for potassium, it shouldn't be necessary for-ever at all. Depends on how much you're getting from your diet as well. Best of luck.

Thank you. I do notice shortly after taking anything with methylfolate.
However now - I'm reading about people destroyed by methyl B12 and that's been my experience so far. I had none of these issues before I started about 3 weeks ago. I had other friends gastro issues that have *significantly* improved. So I guess there's no winning.

 

[YippeeKi YOW !!]

What is LDN?

Low dose naltrexone. Do a quick google for more info ..

 

[Freddd]

Thank you. I do notice shortly after taking anything with methylfolate.
However now - I'm reading about people destroyed by methyl B12 and that's been my experience so far. I had none of these issues before I started about 3 weeks ago. I had other friends gastro issues that have *significantly* improved. So I guess there's no winning.

https://www.quora.com/Has-someone-u...nd-what-were-the-outcomes/answer/Fred-Davis-7

This has lots of symptoms. Lack of sufficient methylfolatre goes to hundreds of symptoms. Low potassium feels mjiserable, often is gut problems.

 

[TinaT]

This has lots of symptoms. Lack of sufficient methylfolatre goes to hundreds of symptoms

What has of symptoms? I believe I've noticed bad allergy type symptoms after taking anything with methylfolate. I feel better for two days after methyl B12. But then get very miserable. I'm working my way through your biggest threads. I don't think I can handle high doses of methyl B12 bc of potassium despite adding about 1K at this point. I'm just trying any half doses of various vitamins including B minus, buffered C, electrolyte drink, fish oil, folonic acid, D.

 

[dannybex]

Thank you. I do notice shortly after taking anything with methylfolate.
However now - I'm reading about people destroyed by methyl B12 and that's been my experience so far. I had none of these issues before I started about 3 weeks ago. I had other friends gastro issues that have *significantly* improved. So I guess there's no winning.

There IS winning. It may not seem possible now, but many, many people aren't on these threads any longer because they've recovered enough so they don't need to come back here. My friend MoJoey, AliceC, many, many others from years ago. But just like you, a lot of us went through a period of panic, where it seemed like nothing we tried helped, or helped for a decent period of time. Eventually things come together though...

You might consider stopping the methylfolate or B12 for awhile, then restarting at low doses.

And again, we're all different, so what works for one, may make another feel worse for awhile. Some say there's a temporary worsening because nerves are 'waking up' to nutrients they have been deprived of. But it passes.

Personally, I can't take ANY sort of B-complex due to the B6 in them. Just can't tolerate it at all -- causes neuropathy (tingling, numbness, shooting pains if it gets bad) and agitation, so I take my b-vits separately, with an emphasis on folate, B12, and methionine -- and no b6.

But that's me. You may find B6 helpful, as some do.

 

[YippeeKi YOW !!]

I don't think I can handle high doses of methyl B12 bc of potassium despite adding about 1K

I'm assuming 1 gram (1000 mgs) rather than 1 kilo ??? Cause that would be .... you know .... overkill ....

B minus

????

 

[TinaT]

I'm assuming 1 gram (1000 mgs) rather than 1 kilo ??? Cause that would be .... you know .... overkill

Yes, sorry. I'm not scientific. 1000 mgs.

B Minus is a product from a company called Seeking Health. It is a B complex without B12 or folate -- with the idea that you can add the formo you prefer of the other two.

I'm realizing this morning that I can't tolerate their electrolyte drink though (which had been a key source is my potassium). That's another one of their products.

It's too acidic and the reflux progress I had made with B12 is going backward. I'm going to try putting that in my breakfast smoothie to help alkalize it. (I had been adding it to alkaline water but that's not enough.) Hopefully that helps. But that would probably work well for anyone who doesn't have reflux.

 

[dannybex]

@TinaT Life Extension makes a potassium bicarbonate product that comes in 500mg capsules.

I wait about 2 hours after a meal, then take two with a small glass of water. Then another 15 minutes to a half hour later I drink a little more water. Typically within 15 minutes or so, that relieves any reflux and lets the food move on into the small intestine.

You can also buy potassium bicarb in bulk.

 

[Freddd]

Yes, sorry. I'm not scientific. 1000 mgs.

B Minus is a product from a company called Seeking Health. It is a B complex without B12 or folate -- with the idea that you can add the formo you prefer of the other two.

I'm realizing this morning that I can't tolerate their electrolyte drink though (which had been a key source is my potassium). That's another one of their products.

It's too acidic and the reflux progress I had made with B12 is going backward. I'm going to try putting that in my breakfast smoothie to help alkalize it. (I had been adding it to alkaline water but that's not enough.) Hopefully that helps. But that would probably work well for anyone who doesn't have reflux.

For me anyway, reflux stopped within 24 hours of absorbing my first working MeCbl. It was a functional thing. Also severe methylfolate also caused me reflux and it took more methylation to stop. Other things of any of half a dozen or more vitamins or lack of nutrients can stop methylation and cause reflux if they are severe enough. That included low vit D as I found out when I finally realized that I could not absorb D3 orally. I had to get a UVB lamp to make vitamin D in the winter.

 

[Freddd]

There IS winning. It may not seem possible now, but many, many people aren't on these threads any longer because they've recovered enough so they don't need to come back here. My friend MoJoey, AliceC, many, many others from years ago. But just like you, a lot of us went through a period of panic, where it seemed like nothing we tried helped, or helped for a decent period of time. Eventually things come together though...

You might consider stopping the methylfolate or B12 for awhile, then restarting at low doses.

And again, we're all different, so what works for one, may make another feel worse for awhile. Some say there's a temporary worsening because nerves are 'waking up' to nutrients they have been deprived of. But it passes.

Personally, I can't take ANY sort of B-complex due to the B6 in them. Just can't tolerate it at all -- causes neuropathy (tingling, numbness, shooting pains if it gets bad) and agitation, so I take my b-vits separately, with an emphasis on folate, B12, and methionine -- and no b6.

But that's me. You may find B6 helpful, as some do.

And many of those successful people have contributed a lot of information that helped understand how this nutrient information was delveloped.. I have spent well past 45,000 hours on all this since 1978. That was 45,000 hours ten years ago. Be well. Everybody has different sets of insufficient or deficient symptoms for severtal reasons. Know your body and how it reacts;. This really is a game of "YOU BET YOIUR LIFE". And this one isn't a funny game. Be well.

 

[TinaT]

Also severe methylfolate also caused me reflux and it took more methylation to stop

Thank you!!

So how did you accomplish "more methylation"? Just more taking the stuff you recommend?

Also, do you know what would be causing abdominal water retention? I think you said somewhere folonic acid, which I just started taking maybe a week ago. I'm getting slightly concerned about heart failure.

 

[TinaT]

Life Extension makes a potassium bicarbonate product that comes in 500mg capsules.

Thank you. I've just been nervous about taking more than 100-300 (using powder in water) without a confirmed deficiency. Still, I'm going to order this and try at least one to start. I know that I can handle at least 500 at this point.

Also, do you have any idea what would cause water retention? I have been taking folonic acid. But I'm getting slightly concerned about heart failure.

 

[TinaT]

I wait about 2 hours after a meal,

Why do you have to wait until 2 hrs after a meal? I'm just wondering bc I think I need some now, and I just ate.

 

[Freddd]

Thank you!!

So how did you accomplish "more methylation"? Just more taking the stuff you recommend?

Also, do you know what would be causing abdominal water retention? I think you said somewhere folonic acid, which I just started taking maybe a week ago. I'm getting slightly concerned about heart failure.

I had an extras hundred pounds of water. When I started MeCbl and then methylfolate I lost 45 pounds in a month. Then a few months ;later I started l-carnitine fumarate. I lost another 45 pounds in a month, all water again. I titrated each item until it all worked, then when various symptoms that happen as refeeding syndromes I know what to incrtease for fixing those. It worked very well and I was almost dying from congestive heart failure and wouldn't have lasted a single year more before I started shedding that water with the right things for major healing. I have specified the nutrients I used, none were secret. However I a;lsol had to try 10 brands of MeCbl to find one or two of really active effective ones. I have to switch methylfolates from Metafoimn type to Quatrefolic type folate product. I've had to switch which carnitine I used from time to time. It took 7 years to find I had to take lithium to be able to get enough copper absorbed. So the exact product often had to be tested against many others to find the one or two that worked best. I have no idea why I needed the specific copper supplement that worked best and others not as well or irritated my stomach. They might just be caused by CBL-C disease which appears to have missing pathways or need use of alternate pathways. And they cahnge from time to time.

 

[Freddd]

Folinic acid does not work for me. It causes folate deficiency symptoms without the imporvment of getting refeeding symptoms.

 

[TinaT]

Zinc - 50 mg
Calcium/magnesium supplement
D3 - 3000-5000 IU total
A&D from fish oil, 10,000-(400-800-1000 D) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
Vitamin E, Gamma complex http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0
Vitamin C 4000+mg/day

Hi Fred. Obviously I've read your protocol many times at this point. Unfortunately the citric acid in the B12 lozenges bothers my sore mouth / reflux situation -- although that has greatly improved since taking the first methyl shot -- seems like low potassium is making that worse again -- I'm doing my best to replenish enough potassium without killing myself. I still don't know how much is safe so I'm being conservative. That means I still have reflux basically.

However, I do have methyl and hydroxy from a compound pharmacy in my frig, and can inject myself. I've been waiting many days between doses bc I already can't handle days 3 & 4 -- I don't want to pile on. I don't think I can handle it with the low potassium.

Anyway, I have some questions:

1) Why don't you include iron? I mean, esp for those of us who have an iron deficiency -- my ferritin is 18-- my understanding is this is critical.

2) Why don't you include copper, given so much Zinc?

3) What is the reason so much Zinc is needed?

4) Did you ever try eating liver, which has a lot of this stuff?

5) Why would we need Vit E in supplement form?

6) Did you try food as part of any of this?

7) Would you trust methyl from a compound pharmacy (a good one), in a cloudy jar?

Thank you!!!