Active B12 Protocol Basics

[rosara]

hi all,

just wanted to share what’s been going on with me in case @Freddd or any others have suggestions. i’m at the end of my rope.

in june 2017, i basically stopped eating because of idiopathic anaphylaxis. i survived on nothing but vegetable soup until about may 2018, when i introduced chicken. i didn’t have any animal fats or supplemented vitamins or anything. so, you can imagine what happened to my b12. i’m eating a fairly rounded diet now, but that hasn’t totally reversed the damage. if i don’t eat animal fats daily, i can’t sleep. and i still can’t nap, which is hard because i was unofficially diagnosed with narcolepsy.

in the summer of last year, i started supplementing with sublingual pure methycobolamin, from bio alternatives. got startup symptoms from just a single drop. but i could never titrate up high enough — not only because of the apparent potassium issue, but because of intense swelling. my veins would bulge and i’d be in so much pain. i do have a supplement (endovan) with nattokinase, and if i take this with my b complex (which i started instead of pure methylcobolamin), it helps with the edema. not the potassium, though.

i suspect i have some sort of trap going on as well. my b complex has methylfolate in it, which i now know is not the right form of b9 for this whole issue. a year ago was my last bloodwork (while i was still on m-cobalamin), which revealed elevated serum levels of b12 (>700). unfortunately, they didn’t test for MMA. i also had a urine panel that month, which revealed some poor hormone methylation. i have ehlers danlos syndrome, which is associated with methylation and nutrition issues. so, lol.

i’d been gradually doing better with occasional b complex and nattokinase supplementation (once every few days or so). then, the other day, i was feeling shit. my hormones have been out of fucking control lately, and i decided to see if vitamin c would help like it had in the past. well, i experienced such INTENSE numbness and “heart disturbance”, and taking my b and natto just made it worse. i ended up with spasms and weakness and increased thirst, so i shoveled 5 bananas. which helped somewhat. weirdly enough, cbd oil helps somewhat, too.

anyway, i’m about to start fred’s protocol, but i wanted to see if anyone had additional insights, especially re: the vitamin c, because what the actually flying f*ck????

thank you, big time!!!

 

[yukito]

Hello everyone,

As you may have noticed the recommended enzymatic therapy B12 infusion, used in freddd's protocol is now sold under the label Nature's way B12 infusion (customer service says nature's way bought enzymatic )

It has mantained his flavor and shape;but I wonder if it is still exactly the same as the old one?

I usually see small differences from batch to batch and even from pill to pill of the same batch,so it is going to take me some time to figure it out by myself.

If some hypersensitive users could share their impressions about the quality of this B12 Nature'way or have in mind other as effective B12 alternatives ,it would be very much appreciated.

Thank you.

 

[pibee]

anyone has any sound idea why methylB12 regulates my circadian rhythm disturbance for 1 week when i take it and then it stops working?
(even high dose)

so frustrating! !!!
it was only thing ever that actually regulated my rhythm

 

[LisaGoddard]

Re Pibee. The things B12 does amazes me. It sorted out my social phobia (which high antipressants couldn't touch) and sorts out my pain. I don't know anything, however, about its effect on the circadian. I have to take Mirtazipine to sleep but did notice that B12 at night does help. I know how frustrating it is not to sleep. Hope someone call help. I do wonder if there is some supporting co-factor that you need.

Re Yukito Thanks so much for posting about the change from Enzymatic to Nature's way. I wondered why my suppliers had suddenly dried up.

 

[Learner1]

From drugs.com:

"Mirtazapine is an antidepressant. The way this medication works is still not fully understood. It is thought to positively affect communication between nerve cells in the central nervous system and/or restore chemical balance in the brain. Mirtazapine is used to treat major depressive disorder."

"You should not take mirtazapine if you are also taking tryptophan (sometimes called L-tryptophan).

Do not use mirtazapine if you have used an MAO inhibitor or methylene blue injection n the past 14 days. A dangerous drug interaction could occur. MAO inhibitors include isocarboxazid, linezolid, phenelzine, rasagiline, selegiline, tranylcypromine, and others.

Some people have thoughts about suicide when first taking an antidepressant. Your doctor will need to check your progress at regular visits while you are using mirtazapine. Your family or other caregivers should also be alert to changes in your mood or symptoms."

There are MANY less risky natural substances one can take for sleep. I especially like it when the explanation for a drug is "we don't know how it works"...

 

[dh214]

What dosage schedule did you start out with? What dosage did you titrate up to?

Thanks

 

[mitoMAN]

Sorry for this very noobish question but I am a bit confused right now. My pharmacist said that one would need to take folic acid with hydroB12 injections to properly process it. There are brands that already offer combined injection hydroB12 with folate.

From what I understand this thread says that one SHOULD NOT take folic acid with B12?
Does this only apply to methylB12 (still trying to find a seller for injectible methylB12 in Germany) or also to hydroxyB12?

 

[Learner1]

HydroxyB12 should eventually convert to methyl B12. You'd likely want either folinic acid or 5-MTHF, NOT "folic acid" which many can't use and which can build to toxic levels.

Seeking Health | Hydroxo Vitamin B12 with Folinic Acid | 60 Vegan Lozenges | 1000 mcg Vitamin B12 and 800 mcg DFE Folate https://www.amazon.com/dp/B01G7P50F6/ref=cm_sw_r_sms_apa_i_g-z4EbN9N49B4

You'd also want B2, B6, and magnesium to support methylation.

 

[Victronix]

Hello everyone,

As you may have noticed the recommended enzymatic therapy B12 infusion, used in freddd's protocol is now sold under the label Nature's way B12 infusion (customer service says nature's way bought enzymatic )

It has mantained his flavor and shape;but I wonder if it is still exactly the same as the old one?

I usually see small differences from batch to batch and even from pill to pill of the same batch,so it is going to take me some time to figure it out by myself.

If some hypersensitive users could share their impressions about the quality of this B12 Nature'way or have in mind other as effective B12 alternatives ,it would be very much appreciated.

Thank you.

I've been taking Enzymatic Therapy's B-12 infusion for several years now and just in the past couple of months I've gotten pretty bad numbness in hands and feet, and now have increased the dosage by 500 (I take 7000 per day). So far, the 500 helped nicely initially, but now it is going back to numbness again, so I will probably go up to 1000 more and see if that helps stop it.

In trying to think what changed (aside from aging, in general), the only thing has been that I started taking a digestive enzyme with ox bile (https://www.thorne.com/products/dp/bio-gest-reg-60-s ). So I'm wondering if there was some type of reaction, or if indeed, something has changed with Enzymatic Therapy now that it is run by Nature's Way.

It's also too bad that you can't buy it directly from them, and cannot buy it in a store (at least not where I am), only online. So no matter what, you cannot get around the potential for compromise in shipping from heat.

Without getting into the details of everything else I take - I have not really changed anything else, so that's a different discussion. But I would appreciate any thoughts anyone has.

 

[Learner1]

There can be a cumulative effect/buildup of things you take.

The B12 infusion product is confusing to me. Generally, an infusion is given intravenously, and from what I can make out, this is a chewable, cherry flavored tablet, not at all and infusion. It's also 1mg a tablet, which isn't a huge dose. And, it's got sugar in it, not something desirable in a supplement for sick people. There are many other high quality MB12 products available, from Thorne, Seeking Health, and many others.

Still, I've never heard of B12 creating
neuropathy, unless if it's deficiency. The digestive enzymes aren't a likely cause either. You might look elsewhere in your protocol. One thing that can cause neuropathy is too much pyridoxine HCl - I've found I can take 350mg a day of pyridoxal 5 phosphate just fine, but 100mg a day of pyridoxine started to give me neuropathy. Deficiency of B6 can also be a cause of neuropathy - it's used in over 100 reactions in the body, and we have different needs that compete for it - I find a lot of people focus too much on folate and B12, and forget about B6, and, as I mentioned, in my case, I need a huge dose of B6 and the form of P5P to not have deficiency symptoms.

Another B vitamin that gets overlooked when people are working on methylation is having sufficient B1, which is used in the transsulfuration pathway, and deficiency can cause neuropathy. If you start loosening up toxins, especially heavy metals, with phase 1 and please 2 detox, they need to get down the transsulfuration pathway, which uses B1 and molybdenum. I take Life Extension Benfotiamine, but there are other products like allithiamine that people swear by.

Copper deficiency can also cause neuropathy.

This is why I hate the active B12 protocol. People get into trouble by just following a recipe, rather than looking into their individual needs. I highly recommend doing a Genova Diagnostics NutrEval, which is the most comprehensive test that I know of, that can spot nutritional deficiencies and imbalances. I find it useful because you can see what entire pathways are doing, and it just as necessary to stay out of trouble.

Best wishes...

 

[Victronix]

Thanks, very helpful to consider these points.

In terms of the Enzymatic Therapies B-12, it was much better than the others I'd tried several years ago, Jarrow and Solgar, but I have not tried the ones you mention, will consider that.

I actually have very high B6 since taking a food multi, which I was really glad of, since I do react when I take it in a non-food form after some time, and it's not fun. I do take a small amount of B1 daily, but I'll consider that also.

If you knew someone who had a neuropathy and wanted them to try copper, is there a brand or dosage you would recommend? I know Fredd has a thread on that somewhere, but just wondering.

 

[Learner1]

One can become copper toxic pretty fast. Most supplements come in 2mg. I would try one of these if I needed it:
https://www.thorne.com/products/dp/..._AOwOOmfTUlGtZUuFE-KJy_m2FYP-Lv0aApTcEALw_wcB

https://www.pureformulas.com/copper...Ur-fu6lotDPjvYGx1ivFwiN24pJlZYPYaAkrcEALw_wcB

 

[pamojja]

If you knew someone who had a neuropathy and wanted them to try copper, is there a brand or dosage you would recommend?

Only supplement copper if tested deficient in serum or whole blood. Best tested at least along with zinc. Or one might regret.

 

[triffid113]

It's ok, Fredd. People aying with vitamons shoild always double check and form their own opinions. I followed your protocol but mevet even consideted not taking copper (or noticed if u didn't list it). It helped me a lot. It does not mean anyone won't fall into another health problem ever. Many people are like tightrope walkers trying to skirt around a lot of broken genes. For instance, I have henetic hogh blood pressure and can't eat salt, except when myergies kick in and I get adrenal echaustion - then I need salt! The teeter totter wobbles... knowledge of what causes&fixes the yaws enables better living longer. It does not guarantee that teeter totter will never faulter. IMHO through observation of self.

 

[Sophiedw]

@Freddd if you are still around. I've been struggling with a version of your protocol for quite some time... I've come to realise I need supplemental amino acids along side other elements of your protocol. It makes sense to me that all these would be necessary for my body as it undergoes massive protein synthesis. I was wondering if you had any idea why they were never essential to you. In your healing journey?

Thanks

 

[Learner1]

@Freddd if you are still around. I've been struggling with a version of your protocol for quite some time... I've come to realise I need supplemental amino acids along side other elements of your protocol. It makes sense to me that all these would be necessary for my body as it undergoes massive protein synthesis. I was wondering if you had any idea why they were never essential to you. In your healing journey?

Thanks

Freddd has volunteered he has some unique genetics not shared by other ME/CFS patients.

And, needs for methylation nutrients can vary quite widely due to both genetic and environmental factors.

There is no substitute for comprehensive nutrient testing like a Genova Diagnostics NutrEval FMV with amino acids.

 

[Sophiedw]

Mmmm I tend to agree. A little out of my price range though unfortunately so have to stick to some long winded trial and error for now.

I was more wondering if Freddd or anyone else had any opinions on how he might have established all the extensive healing / protein synthesis he needed to recover without taking any supplemental aas. Seems my body has been low in glutamine which makes sense as all my muscles have recovered etc.

 

[Freddd]

@Freddd if you are still around. I've been struggling with a version of your protocol for quite some time... I've come to realise I need supplemental amino acids along side other elements of your protocol. It makes sense to me that all these would be necessary for my body as it undergoes massive protein synthesis. I was wondering if you had any idea why they were never essential to you. In your healing journey?

Thanks

Hi Sophiedw,

I think I have run into head first something of the sort you have. For instance, I use Metafolin-Deplin type methylfolate and they work well for a month to more than a year and suddenly I have to change to Quetrafolic methylfolate and l-carnitine fumarate stops working. And with the things that stop there are the new ones that now work. The carnitine fumarate stops but the l-carnitine freebase works great for a while.The thing is my pathways have different variations that suddenly change from one kind working to a different one now working. My copper was difficult to work with. It took 7 years to find a variety that didn't hurt my stomach and end up in a usable amount. And further, no balance was possible until I got more than a year into lithium and building TransCobalamin Receptor -Li. That micronutrient lithium (orotate, tantrate, other mineral non-ionic forms) helped balance copper which balanced testosterone which balanced MCV.

The various micronutrients can make a huge effect beyond what seems reasonable for micronutrients. One of the co-conditions that appears to occur in my body is messed up electrolytes. However, that same effect of messed up electrolytes appears to be caused by lacking lithium homeostasis. So maybe it is both perhaps. MeCbl, AdoCbl, L-methylfolate, B6 (p5p?), copper and maybe some others all can affect MCV.

I took all kinds of supplements. I tried to notice which items that are missing that make a significant response within a day.

A lot of variation occur with micro hormone differences. I don't know which ones will work for which possibilities.. Many people have many differences with virtually no warnings.

And now, after 5 years, mineral Lithium, such as lithium orotate, makes a huge set of differences compared to now using lithium. It tends to operate the homeostasis of healing and changes the balances of your nutrients. I took me about 5 years to slowly adjust to a different homeostasis as the Transcobalamin Receptors-Li were able to to grow more such receptors with MeCbl and AdoCbl in place of the catalytic form of cob[ii].

 

[Learner1]

There is still no substitute for comprehensive nutrient testing.

 

[Sophiedw]

Hi Sophiedw,

I think I have run into head first something of the sort you have. For instance, I use Metafolin-Deplin type methylfolate and they work well for a month to more than a year and suddenly I have to change to Quetrafolic methylfolate and l-carnitine fumarate stops working. And with the things that stop there are the new ones that now work. The carnitine fumarate stops but the l-carnitine freebase works great for a while.The thing is my pathways have different variations that suddenly change from one kind working to a different one now working. My copper was difficult to work with. It took 7 years to find a variety that didn't hurt my stomach and end up in a usable amount. And further, no balance was possible until I got more than a year into lithium and building TransCobalamin Receptor -Li. That micronutrient lithium (orotate, tantrate, other mineral non-ionic forms) helped balance copper which balanced testosterone which balanced MCV.

The various micronutrients can make a huge effect beyond what seems reasonable for micronutrients. One of the co-conditions that appears to occur in my body is messed up electrolytes. However, that same effect of messed up electrolytes appears to be caused by lacking lithium homeostasis. So maybe it is both perhaps. MeCbl, AdoCbl, L-methylfolate, B6 (p5p?), copper and maybe some others all can affect MCV.

I took all kinds of supplements. I tried to notice which items that are missing that make a significant response within a day.

A lot of variation occur with micro hormone differences. I don't know which ones will work for which possibilities.. Many people have many differences with virtually no warnings.

And now, after 5 years, mineral Lithium, such as lithium orotate, makes a huge set of differences compared to now using lithium. It tends to operate the homeostasis of healing and changes the balances of your nutrients. I took me about 5 years to slowly adjust to a different homeostasis as the Transcobalamin Receptors-Li were able to to grow more such receptors with MeCbl and AdoCbl in place of the catalytic form of cob[ii].

Hey Freddd,

Thanks for the response. I was wondering if you had the names of any researchers or links to any references of transcobalamin-li receptors. Actually anything you've read about homeostasis in general but specifically that t-li stuff if it's not too much trouble to point me in the direction of some general reading.

Thanks again for your extensive writing on here! Although I am not identical, there are some similarities between my problems and yours and I would have been a bit buggered if you hadnt worked all that out in the past.

Hope you are well!