B-12 - The Hidden Story

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rosara

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hi all. posted this in a different thread but got no replies. posting here because i need urgent help :(

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!!!
 
sflorence

sflorence

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Is it okay to take Niacin alongside the protocol? I get wayyyy overmethylated and start to become manic and full of rage. No matter how low I start with the supps this happens.
 
drmullin30

drmullin30

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sflorence said:
Is it okay to take Niacin alongside the protocol? I get wayyyy overmethylated and start to become manic and full of rage. No matter how low I start with the supps this happens.
Click to expand...

Hi sflorence, methylated Niacin e.g. nicotinamide riboside or is ok to take but nicotinic acid which causes flushing is not. Anything that hinders methylation works against the protocol and most niacin requires methyl groups to work in the body.

I'm not sure any more that overmethylation is a thing. I think it's probably either start-up, detox, or maybe a treatment conflict with other SNPs e.g. CBS or COMT.


The key is to start very low and go slow with the methylfolate and methyl b12. There are other places in this forum that provide details.

Full disclosure, start up and detox in the initial stages was absolutely brutal for me and included plenty of heavy metal elimination which can cause anxiety, irritability, rage etc.
 
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drmullin30

drmullin30

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rosara said:
hi all. posted this in a different thread but got no replies. posting here because i need urgent help :(

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!!!
Click to expand...


Hi Rosara,

Vitmain C is a potent chelating agent for many heavy metals it can also increase methylation so your symptoms could be start-up or heavy metal elimination.
 
R

rosara

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4
drmullin30 said:
Hi Rosara,

Vitmain C is a potent chelating agent for many heavy metals it can also increase methylation so your symptoms could be start-up or heavy metal elimination.
Click to expand...

thanks for the reply! update: tried to take methylcobolamin a couple weeks ago and it triggered mania, psychosis, and suicidality, along with worsened anemia symptoms. i’m still recovering. i got my blood taken a couple days ago: high b12 despite only taking >1000 mcg a couple times. low folate. also low iron (and low saturation). they only faxed half my bloodwork back from the lab, and the GP i saw was kind of an idiot. still not sure about actual anemia status! still waiting on serum MMA.

last week, i started seeing a naturopath who specializes in methylation. she said i likely have a COMT mutation (i have 2 so far that i can see in my raw data). it’s annoying because i’m also homozygous for the a1298c. my urine adrenaline is too high already. she explained that i likely need hydroxycobolamin instead. will discuss the folate issue with her tomorrow 👌🏻 i strongly suspect i have an infection like h. pylori; i did SO well in a brief window after i took antibiotics for a UTI. my stomach felt so peaceful, and so did the rest of me. no palpitations, just perfect. it’s known to cause or aggravate b12 malabsorption! plus, my insides feel like holes are burning in them. will test soon for that, too.
 
drmullin30

drmullin30

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Hi Rosaria,

If you felt anemic taking b12, it could be due to copper deficiency. Copper is needed for proper utilization of b12 and iron. If you are having that strong a reaction to that dose, It could be that you have a heavy metal problem with mercury and/or cadmium etc. It sounds like you are similar to me, homozygous for 1298 and COMT ++ and when I started with mb12 I had many of the same mental manifestations but now I only used methylcobalmin for my b12 and I am able to take huge doses with good results now.

Because of the MTHFR 1298, you're ammonia is likely very high and your BH4 will probably be low. You mentioned COMT so hydroxycobalamin is probably the right b12 to start with but the key for a COMT down regulation and to keep that working is to keep the SAMe to SAH ratio high to keep dopamine converting properly away from adrenaline (epinephrine). To do that you will probably need to supplement with methylfolate and eventually mb12.

If you don't have any MTR or MTRR SNPs, (which I also have) you might not need very much mb12. The mania and anxiety also tells me that your nervous system glutamate levels are probably really high or shoot up with the mb12. You could check your genetics for GAD SNPs and there are options for that as well such as glycine, NAC, lemon balm and kava kava. B6 is important for that conversion as well and can be rate limiting for serotonin synthesis.

The other really important SNP to get under control especially for MTHFR 1298 is if you have a CBS up-regulation. This will aggravate your glutamate and your ammonia levels (ammonia requires BH4 for elimination which is limited by your MTHFR 1298 and is also anxiety inducing), cause high sulphites (which also cause anxiety) and basically mess with the SAMe and sulfation cycles. If you have a CBS up-regulation you could be very deficient in molybdenum and zinc and you will want to be very careful with copper.

I had a very bad CBS up-regulation when I started methylation and it made everything much worse at the beginning because every increase in methylation flow increased SAMe which then flows down the up-regulated CBS and causes a lot of anxiety by creating spikes in glutamate, ammonia and sulphites and interfering with the SAMe flow through COMT. On top of all of this if you have mercury issues it will make you even crazier as it gets mobilized and eliminated.

I hope this isn't too confusing and helps you out.

This website helped me understand all of the interactions between SNPs and was an important resource for me when I started out: http://www.heartfixer.com/AMRI-Nutrigenomics.htm
 
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Hoosierfans

Hoosierfans

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Hi all -- looking for some help from the long time experts here. Not sure if @Freddd or @Lerner1 want to weigh in. I'm trying to absorb all the info on this thread and want to make sure through the brain fog / memory that I have the correct "plan."

Quick background: severe neuro symptoms with constant dizziness, skin burning all over, jittery, anxious, severe depression, significant cognitive decline, bed and housebound because of symptoms. About 14 mos ago had an OAT test that showed high MMA, but have had no other bloodwork for B12 deficiency (requesting from my doc as we speak). At the time the MMA came back, the doc I was working with had me take 3 mg sublingual Adeno B12 along with 2x week lithium. Didn't see any improvement in symptoms.

I read the following posts to try and glean the protocol:

Freddd said:
Slow titration
Start on day 1 with 1 quarter tablet of Enzymatic Therapy 1mg or Jarrow 1mg mb12 or Country Life adb12. This can amount to a 30-60mcg absorbtion, 3x that for the adb12. Much of this will go into the tissues within the actual period of absorbtion. Taking additional quarters can be timed so as not to increase intensity. Taking a half will increase the intensity. If one only takes 1 quarter a day it is unlikely to ever reach equilibrium. I would suggest, that as long as the intensity is tolerable to take at least 8 quarters a day. After a few days, as long as comfort is maintained try ½ tablet. It’s not that there won’t be symptoms shifting and intensification, there will be. We are just trying to keep the intensity under control.

Rapid titration
Do as above with ½ or whole tablets. Over the days increase to ¼ of a 5mg, then ½ of a 5 mg tablet and finally to a 5mg tablet. At 5mg tablet 4 times a day most people will reach a stable equilibrium that is at the maximum short of injections or multiple tablets per dose. However, once one reaches this point, 2 x 5mg tablets at a time or 4x5 may be a just barely noticeable difference from 1 tablet, if there is any additional effect at all. At around the point of 50mg in 2-3 hours with multiple tablets at a time a threshold effect may be noticed. This is the point approximately equivalent to a 7.5mg injection, the point at which the Japanese research and my own experience indicates up regulated neurological healing may occur. Above that dose no additional noticeable effect occurs at up to at least 25mg injection. This may only apply to people with CNS/CSF deficiencies. That is unknown at this time. There are current Japanese studies being done with 50mg IV infusions that may define this zone more clearly. This is the area I’ve labeled as ZONE 3 on some other posts which I’ll repost here. A fast high dose repeated for several days will soon loose it’s startup effects and will rapidly diminish that of smaller doses. Approximately 20mg on day one may cause a lack of startup effect on day two for any dose less than approximately 2-5mg.
Click to expand...
Freddd said:
• ZONE 1 – Cyanob12, oral or injected any size dose, hydroxyb12, oral or injected any size dose, methylb12 oral in doses of 500mcg or less. Limited results largely confined to those changes requiring lab tests to see; reduced hcy, reduced uMMA, sometimes reduced MCV, occasionally mild changes in paresthesias and peripheral neuropathies over time. From literature and experience

.• ZONE 2A – methylcobalamin sublingual 1mg to 50mg/day, single sublingual doses to 25mg and IM and SC injections up to 5mg. Dose proportionate healing of widespread symptomology. From literature, tests and experiences. Heals neurology, endothelial tissues, epithelial tissues, energy and mood. Some healing, hematological at least, is dependent upon adequate methylfolate being present. It appears that about 95% of healing takes place in Zone 2A & 2B.

• ZONE 2B – adenosylcobalamin sublingual, 3mg to 60mg/day and single doses to 24mg. Less obvious dose proportionate correction and healing of a smaller more specific array of symptoms. Heals muscles, allows them to grow, energy, mood, affects neurology differently from methylb12.

• ZONE 3A1 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 1-2 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 1-2 doses per day. Brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present. Neurological deterioration stops, limited amount of healing

• ZONE 3A2 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 3-4 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 3-4 doses per day. Substantial brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present.
Click to expand...

I have Vitamins A, C, and E already on board, as well as B1, R5P and Molybdenum. Do I understand that the proper steps should be....

1. Add in zinc piccolonate, potassium
2. Add in Pure Encapsulations B Complex + Metafolin (is this product ok given that I am COMT ++)
3. Add in Solgar Metafolin (again, is this product ok given COMT?)
4. Add in Enzymatic Therapy 1 mg -- start at 1/4 tablet, 4 times per day and work up as tolerable...up to (do I have this right?) 50-60 mg each dose 3-4 doses per day (i.e. total of 150 - 240 mg per day??) OR Source Naturals Dibencozide 10 mg -- start at 1/4 tablet, 4 times per day and work up as tolerable....up to ??

Hopefully I have that process correct!
 
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Learner1

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Hoosierfans said:
Hi all -- looking for some help from the long time experts here. Not sure if @Freddd or @Lerner1 want to weigh in. I'm trying to absorb all the info on this thread and want to make sure through the brain fog / memory that I have the correct "plan."

Quick background: severe neuro symptoms with constant dizziness, skin burning all over, jittery, anxious, severe depression, significant cognitive decline, bed and housebound because of symptoms. About 14 mos ago had an OAT test that showed high MMA, but have had no other bloodwork for B12 deficiency (requesting from my doc as we speak). At the time the MMA came back, the doc I was working with had me take 3 mg sublingual Adeno B12 along with 2x week lithium. Didn't see any improvement in symptoms.

I read the following posts to try and glean the protocol:




I have Vitamins A, C, and E already on board, as well as B1, R5P and Molybdenum. Do I understand that the proper steps should be....

1. Add in zinc piccolonate, potassium
2. Add in Pure Encapsulations B Complex + Metafolin (is this product ok given that I am COMT ++)
3. Add in Solgar Metafolin (again, is this product ok given COMT?)
4. Add in Enzymatic Therapy 1 mg -- start at 1/4 tablet, 4 times per day and work up as tolerable...up to (do I have this right?) 50-60 mg each dose 3-4 doses per day (i.e. total of 150 - 240 mg per day??) OR Source Naturals Dibencozide 10 mg -- start at 1/4 tablet, 4 times per day and work up as tolerable....up to ??

Hopefully I have that process correct!
Click to expand...
Sorry, just saw this - please tag me as @Learner1 if you want to get my attention.

1. Add zinc and potassium only if you need them. Make sure you also have adequate magnesium - mag malate in morning or mag glycinate before bed.

2. I am COMT ++ for multiple SNPs and don't have a problem with B vitamins. I'm not keen on the balance in the Pure Encapsulations product for you, given our discussions. You might try Seeking Health B Complex Plus (with additional B12) then move up to Designs for Health B Supreme.

4. I'd add extra MB12 or AB12 before adding folate. Somewhere between 500mcg and 10mg?

3. Add 5-MTHF, somewhere between 800mcg and 10mg?

You might do homocysteine and a CBC every once in awhile, watching MCV, or just do methylmalonic acid and serum or RBC folate and watch symptoms, of course.;)
 
Methyl90

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[QUOTE = "Learner1, post: 2327753, member: 26850"] Spiacenti, ho appena visto - taggami come [USER = 26850] @ Learner1 [/ USER] se vuoi attirare la mia attenzione.

1. Aggiungi zinco e potassio solo se ne hai bisogno. Assicurati di assumere anche una quantità adeguata di magnesio - mag malato al mattino o magnesio glicinato prima di andare a letto.

2. Sono COMT ++ per più SNP e non ho problemi con le vitamine del gruppo B. Non mi piace l'equilibrio nel prodotto Pure Encapsulations per te, viste le nostre discussioni. Potresti provare Seeking Health B Complex Plus (con B12 aggiuntivo), quindi passare a Designs for Health B Supreme.

4. Aggiungerei MB12 o AB12 extra prima di aggiungere folato. Da qualche parte tra 500 mcg e 10 mg?

3. Aggiungere 5-MTHF, da qualche parte tra 800 mcg e 10 mg?

Potresti fare l'omocisteina e un CBC ogni tanto, guardando MCV, o semplicemente fare acido metilmalonico e siero o folato RBC e guardare i sintomi, ovviamente. ;)[/ CITAZIONE]

So do you take Adeno or Methyl and not both? How long does it take to start methylfolate?
 
Learner1

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@Methyl90 Methylation happens all the time. It is regulated by the nutrients you give to it. Adenosylcobalamin and methylcobalamin convert back and forth, with AB12 being more natively used in cells, from my understanding. The version you want to avoid is cyanocobalamin, which is a cheap version that requires more work for the body to use. And, depending upon genetics, some people may do better with one form over the other. Methylcobalamin is more readily available in high quality supplements, than adenosylcobalamin, and you will see both together in some supplements. In my situation, I found just taking high dose methylcobalamin works well.
 
Methyl90

Methyl90

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@Learner1 If I have not misread the AB version works better for mitochondria but therefore it is not necessary if we want to use the MB version. Exactly? and what about folate after when time is started along with the multivitamin and the B12?
 
Learner1

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Freddd

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

Read the link several kinds. Basically one has to take ALL the nutrients needed to make cells. Then when a bottleneck is hit were ONE nutrient is causing failure of cell completion with specific symptoms. Those symptoms tell you what nutrient to increase. It's a matter of building the chemical pathways.

So miserable symptoms from hours to 3 days or more for miserable symptoms to increase after MeCbl and each nutrient in turn, causes symptoms. After MeCbl or MeCbl and AdoCbl both start demanding potassium to be increased and/or l-methylfolate. Often it can be both alternating until sufficiency is reach. It can be done all at once because most is just thrown out. It needs to build perhaps 25% increase each round, so if a person is at 1000 mcg of methylfolate then 1250 methylfolate or maybe 1500 mcg to build the pathways to deal with that much and then suddenly it switches to potassium needed for the more cells made and then often back to Merthiolate again. These sudden worse or new symptoms are a FLAG OF HEALING and stopping becasue of a missing nutrient needed for currently being made cells.

If a person stops each time they have refeeding symptoms they will never heal. Instead about 95% of the symptoms will be in groups 1, 2a, 2b and 3 and these nutrients will be the most frequently added. At 4 or 8 mg of methylfolate one might see the quantities of symptoms decreasing and some symptoms are gone. I t took me years to get rid of 200 symptoms. The Lithium, MeCbl, AdoCbl, Methylfolate, l-carnitine are all needed to grow cells and after some years I started having better homeostasis becasue of the lithium and the Transcobalamin Receptor Li hels maintain the homeostasis. If you have lesions at the corners of your mouth, sp;lit finger tips and cracks by the nails and skin rashes and so on will be the first things to heal. I have been able to use these guides for what is needed to heal for 17 years. So now when every few months Metafolin (Deplin Metafolin) fai ls to work, lesions start in a couple of days and when I switch to Quatrefolic (different form slightly of methylfolate) all the lesions go away in a few days and IBS takes a few days longer. After a week I can switch back to Metafolin. This has happened 10 times or so for me so far. Also, I have l-carnitines that shift as fast with cell making failure telling you but different from folate. Often one of 5 or 6 carnitines works at a time. Several together don't appear to work at all.
 
Pyrrhus

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Methyl90

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Pyrrhus

Pyrrhus

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Methyl90 said:
don't you think that the negative reaction is positive and therefore you should continue?
Click to expand...

I have continued taking 250mcg hydroxo-B12 per week for 3 years, along with methyl-folate and other B vitamins.

In that time, the immediate negative effects of B12 have become less intense, and the gradual positive effects have become slowly apparent over time.

But if I try to increase the dosage, the negative effects come back more intense.

I hope this clarifies things.
 
Learner1

Learner1

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Pyrrhus said:
I have continued taking 250mcg hydroxo-B12 per week for 3 years, along with methyl-folate and other B vitamins.

In that time, the immediate negative effects of B12 have become less intense, and the gradual positive effects have become slowly apparent over time.

But if I try to increase the dosage, the negative effects come back more intense.

I hope this clarifies things.
Click to expand...
Are you taking either B6 in the form of P5P, molybdenum, B1 in the form of benfotiamine or thiamine HCl, B2, zinc, magnesium, potassium, trimethylglycine, or a combination of these, in addition to folate? Does it happen equally with MB12, which offers methyl groups, which HB12 does not?

Another possibility of intolerance is allergy. I learned, after multiple bouts of hives traced to my B12 shots, that B12 is typically synthesized by bacteria, and the bacteria are grown in a medium based on something. In the case of my hives, turned out they were grown in a corn medium and I'm allergic to corn. Switching to a non-corn synthesized B12 solved the problem. Another bpoddibke allergy is an allergy to cobalt, which one can be desensitized for - see attached.

Or are they just increasing histamine? If so, have you tried DAO, vitamin C, a low histamine diet....

https://igennus.com/blogs/practitioner-blog/managing-histamine-intolerance

Our bodies need B12, it's dangerous to be deficient - one can end up with irreversible nerve damage.
 

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