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Active B12 Protocol Basics

Messages
15
Hi Fredd,

Where do I start 3 years ago I have various symptoms - vibration, tingling, numbness, tightness when moving neck down can feel nerves, nerve pain. Feeling out of balance at times. Most of these issues have gone but I still have tingling & numbness when walking in my legs mainly. I've had neuro tests & they found nothing. Can't do mri as have a pacemaker. I have mthfr Hetro c677t & have snps linked to b12 issues. My active b12 is 128 pmol & serum 661 pmol so they are good ranges. But I've been told high b12 means may not be going into cells. Is this true? Also my homocysteine is 8.1.

I just had a 1 hydroxocobalalim injection & had symptoms that were not pleasant my tingling was more extreme while walking & I had tightness again can feel nerves down my legs neck pulling. Like 3 years ago. That went away next day but had other symptoms couldn't sleep all night like my bodies nervous system was in hyper state & I can feel my nervous system & brain muscles.. Can't really explain the feeling. I took niacin to counteract methylation. Just to see if it stabilises it. Niacin made me confused after 3 day of 1 tablet a day.

I now I feel a bit better but still have a slight tingle tremor I'm wondering do I need b12 as my results for b12 are fine. I'm worried it will cause more neuro issues. Will it get better as don't know if this has done damage? Is there other b12 tests I can do? I'm reading your protocol & am confused I have Brought a b12 oil here in Australia which my naturopath suggested. Also will be taking dollar methyl folate waiting for it to arrives. Am taking magnesium & vitamin d. I also have leaky gut & pyroles. I have meds for this but haven't started yet as my naturopath wants me to start slow on things now bc of my symptoms. She said that the b12 should make you feel better not worse is this right? I just need to know if I'm going down the right path on healing myself. I'm scared if I'm causing more issues. Even my bowels lol sorry to bring this up but notice even going to tiolet that I have floating poo now after b12 & clay like colour. Why would this happen? I will monitor in next week or 2. Hoping for your help here. Thanks for listening.

I just read about hypersensitivity do I have this? I'm scared now if I have a degenerative nerological disease & the symptoms I would get if I take other b12's when it builds up. What are the symptoms of hypersensitivity???
 
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Messages
40
Hi there everybody,

Hopefully quick question... So me, my dad and my little, utterly cannabis-addicted sister want to start supplementing with B vitamins. Me and my sister have been Vegan all our lives, she suffered from pernicious aneamia in the past, I've had symptoms of B-12 deficiency and have a low blood-count (208 and half the minimum platelets). All three of us suffer from depression and anxiety but none of us have ME. My dad has already had heart surgery and takes heart meds every day.

for around a month I've been taking vitamin D3, calcium and magnesium, doing gut healing with probiotics, anti-candida stuff, etc etc. I recently started taking folate, methyl B12 and a couple of days took vitamin B6 only to have a very nasty reaction with panic attacks and not sleeping half the night, so I've cut it out. The past week, so since adding the B12 to everything I was already taking, I suffered from MASSIVE potassium drops, requiring me to consume about 4000-5000 mgs of it a day, with horrible pains and heart palpitations that kept me up half the night in fear I was about to have a heart attack.

Finally, with the kindness and patience of @Mary and @caledonia I have got my side-effects under control, finally stopping the heart issues last night with a dose of Nicotinic Acid.

So my query now is about my dad and my little sister. I suggested they get the Jarrow B-right and 1000mg of methyl B12. My dad got his, and because my sisters got no money, I bought her hers. After getting my heart issues though I feel really worried about recommending to them both that they start taking these supplements, A. because my dad already has serious heart issues, and B. because my sister is really poor and struggling to buy food... she doesn't have the money to go out and buy masses of bananas or V-8. My sister had to leave the gym early yesterday after getting heart pains and has suffered high anxiety since starting the vitamins.

I would be grateful if anyone can tell me which of the supplements is likely to trigger all these side effects, the potassium deficiency, the heart issues etc? Is it the result of taking both the B-right AND the methyl B12? Or rather, if they only take one of them, will they get some benefits but without the side effects? Which should they take?

I know the B*-right has 25mg of B6 and I definately couldn't handle that....

Would it help if they took these supplements (at low doses) with 25mg Nicotinic Acid, or will that just negate the b12 and B-right and defeat the whole object? Or shall I suggest they start low on the B-right and B12 but keep some Nicotonic Acid handy and take it only if they feel unpleasant side effects? Is the B-right is ok in itself, given the 25mg of B6?

I am thinking about sending my sister some Nicotinic Acid and Magnesium, and I've told her to hold off on everything for now until she has money for bananas and V-8... she's been undernourished for a long-time so I'm especially concerned about her going into re-feeding syndrome.

Once again, I appreciate everybody's help and kindness and I wish you all a wonderful day.
 

Mary

Moderator Resource
Messages
17,367
Location
Southern California
@pumpkin - I don't know the answers to all your questions, but here are my thoughts: I think it's possible both the B right and the B12 could trigger low potassium symptoms in both your dad and sister, depending on how deficient they are, because supplementing with both folate and B12 can trigger hypokalemia. Because of your dad's serious heart issues, I think he should talk to his doctor before starting these supplements. Here are couple of articles which reference hypokalemia and treatment with B12 and folate:

https://sites.google.com/site/medicinelecturenotes/megaloblastic-anemia

"Serum potassium levels can fall during therapy for severe cobalamin or folate deficiency and can lead to sudden death. Therefore, potassium supplements may be indicated."

http://emedicine.medscape.com/article/204066-treatment#d11

"Serum potassium levels can fall during therapy for severe cobalamin or folate deficiency and can lead to sudden death. Therefore, potassium should be monitored and supplements may be indicated."

http://emedicine.medscape.com/article/1152670-workup
"Hypokalemia may develop because of increased potassium utilization in hematopoiesis."

I also think it's possible his doctor may know nothing about the potential for severe and sometimes dangerous drops in potassium levels when treating with folate and B12. So your dad needs to educate himself about this and it might be helpful to bring a couple of articles to his doctor to show him what he's talking about. Hopefully the doctor will work with him on potential potassium issues.

Re your sister: I think it's very important to have a source of potassium for her, and since she can't afford high potassium foods, then I'd get her a bottle of potassium glycinate, as well as the nicotinic acid and magnesium. Potassium glycinate is cheap. ETA: whoops - I meant potassium gluconate.

For both of them, I think they should go very slowly with any sort of B vitamin protocol and watch carefully for any signs of low potassium. Maybe your sister should try half or a quarter (or even less) of a capsule of the B right and very slowly increase it if she tolerates it.
 
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caledonia

Senior Member
Basically everything that Mary said.

It seems to me, at least for you and your sister, B12 might be all you need. You ought to have plenty of folate if you're vegans. Your dad might be a different story.

If you just took B12, that may combine with the folate already in your tissues to start up methylation, and vice versa for folate. The folate may combine with any B12 in your tissues to start up methylation. But I would think it would be less intense than adding both B12 and B right.

Have potassium glycinate and nicotinic acid on hand before starting, as you have already found out.

I also think it would be good to get some electrolytes going and get that balanced before starting. So that would be potassium and magnesium and possibly sodium if you're craving salt or salty foods. You/they may already be borderline deficient in them, and the B vitamins make you go into outright deficiency when methylation starts up.

Then start with just B12 and start with a very low dose. You can divide capsules as small as 1/256, which would be 1000mcg/256 = about 4mcg. You can gradually increase over time as it's tolerated.

See my document Start Low and Go Slow for more details. It's in my signature link.
 
Messages
7
Hey guys quick question.

Should the supplementation of the amino acid Glycine be avoided on Freddd's active b12 protocol?

Thank you in advance.
 
Messages
98
How are you using the sublinguals? Sucking on them, under your tongue, break in quarters between lip & gum, ...? That makes a big difference in how much you actually absorb.
@garyfritz Which method do you think works best for nice slow absorption? I am taking 3 Enzys at a time now, and they are dissolving way too fast. They used to dissolve a lot slower when I was taking a smaller amount. I think the bigger quantity makes more saliva. I usually put them between my upper cheek and gum way in the back. Other places towards the front are too sensitive on my teeth (possibly because of the fructose in the Enzy's).

The only sublingual I can put in my lower gum line, between my lips and gum in front, is my Source Naturals AdB12, because it dissolves slowly and I only take 1/4 tablet. For anything else there's too much saliva and it dissolves too fast. Under the tongue is out of the question, they would disappear in a couple minutes.

I want to try to start taking 5000mcg MB12 tablets, but can't do CL because of the xylitol, or Jarrow because of the citric acid. Had a really bad reaction that lasted all day (especially in my legs but felt sick all over) to just 1/4 of a Source Naturals 5,000mcg as soon as I put it in my mouth! Thinking about maybe trying Solgar 5,000mcg nuggets. I do have a prescription for MB12 injections, but I was waiting until I got my dosage up a bit more before switching.

P.S. I once saw a post from @Freddd about how different brands of MB12 might be made from different bacterias than others. I wonder if that's why someone with a lot of sensitivities like me might have problems with one brand over the other.
 

garyfritz

Senior Member
Messages
599
@surfbaby, I like the Country Life 5000mcg sublinguals. It has no sugar and no acids. The fructose in the Enzys is going to rot your teeth eventually. I break the CL's into quarters and tuck a quarter between my lip and gum. But if you can't use xylitol that's not an option for you. I don't know what else to suggest. Sorry!
 
Messages
22
Hi,

I'm MTRR ++ (two forms, one is ++ the other +_), I was taking low doses of MethylB12 but didn't seem to do much. I started taking a 5000 sublingual which has 4000mcg Methyl and 1000mcg adenosylb12, and some times took double and started feeling better (more energy, etc...) . But at times now, it seems that this amount might be too much. I've been taking MethylB12 at 5000mcg and above for 6-12 months, I forget really. But just wondering if after time you might need less? There's been a couple of times where I took no B12 and I slept better. Could have been a coincidence.

I'm just trying to figure out the proper dosing. Not alot of info about this. I'm sure it's different for everyone. I don't have MTHFR. I'm able to handle methyl donors just fine. I do have CBS++ yet it's not apparently active based on testing. Based on the NutrEval test I have a HIGH need for B12 and Glutathione. Although I've read on here that Glutathione might not be a good idea as it lowers B12?

Anyway, just trying to find more info on dosing.

Thank you!
 
Messages
8
Just few questions. Im pretty newbie to this stuff, ive been suffering for low energy, fatique, painful stomach bloating and depression for about 8 months. Ive tried pretty much everything, and now decided to try this methylation protocol stuff. Ive been using methyl b12 5000 mcg, methylfolate 800 mcg and dibencozide 1000 mcg for 3 days now. I got immediately sick the next day i started methylb12, also my fatique increased alot. After 3 days now im still sick but fatique has gone down a bit. Depression is still there, a bit more even maybe.

1. Can this be the "start up" reaction ive been trying to read about. Like many processes kicking in after 9 months of sleep and hibernation. I REALLY want to belive this is just my body detoxing a bit more and kicking out toxins that have been stored there for ages. How long does it usually take to things starting to work? And understand that i have been only sick for 1 year. 2015 i was a happy man with lots of energy. At the beginning of 2016 something happened, idk maybe my adrenals crashed or my gut dysbiosis gut worse, or MAYBE i just ran out of "methylation juice"?

2. How fast should i increase the dosages? I dont want to go to HUGE dosages really. First of all i CANT afford buying 30 dollar supplements every week... Ive read some of you guys taking what 50 mg of methylfolate... thats like half of the 15 dollar bottle? I can never go there unfortunately.

3. I have read that l-carnitine fumarate causes hypothyroid and is actually used to treat hyperthyroidism. I really dont want to use that because what im trying to do actually is to increase my metabolic rate and thyroid function (Ray peat guides).

Im also using potassium and TMG is ready for opening.

Im 22 years old. Like i said i suffer from low energy and fatique, mental symptoms like depression and anxiety, and constant nonstop stomach bloating. Ive been trying to fix my gut for many many months without succes, trying every possible diet (FODMAP, SCD, zero carb ketosis).

Thank you for reading and hope Fredd or someone expert can give me a nice helping hand. :)
 

Eastman

Senior Member
Messages
526
Ive been using methyl b12 5000 mcg, methylfolate 800 mcg and dibencozide 1000 mcg for 3 days now. I got immediately sick the next day i started methylb12...

If 5000 mcg was the amount of mb12 you started with, it's not too surprising you got sick. I think most people start much lower. See, for example, caledonia's Start Low and Go Slow thread and the pdf attached therein.
 

Justin30

Senior Member
Messages
1,065
B right and the B12 could trigger low potassium symptoms in both your dad and sister, depending on how deficient they are, because supplementing with both folate and B12 can trigger hypokalemia.

Yes be very careful as if your body is not absorbing potassium and nutrients properly these supplements can tank your potassium....this comes from experience.
 
Messages
22
Hi Bill,

If you are under-methylated, B12 should be helpful, folate not too much. Depends on your Methylation status. B12 can be stimulating, so you might start with a lower dose and see how you do. If you are an over-methylator, Folate and B12 could make your symptoms worse. (You can read more about folate issues on MTHFR.net)

You should run the 23andMe or Dr. Yasko's Methylation test. Then you can find out if you are a under or over methylator. Or read up on that on the Internet and try todetermine which you are. That will make a big difference on what supplements you can tolerate. Once you get the proper supplements going, it will take time to heal.

Bloating could be caused by all sorts of things. SIBO, poor digestion due to low stomach acid, etc...Megasporebiotic is a good product to help with gut issues if you have bad bacterial in there.

The important thing to do, if you can afford it, is to get some good testing done to determine if you are under or over methylated. What methylation SNP's you might have, etc... Also, spectracell test is good to determine which nutrients you might be low in etc....once you have a better understanding what is going on in your body then you can supplement more appropriately.

TMG can also be stimulating depending...It will definately trigger possible detox. TMG converts homocystein into methionine which can convert into SAM-e in the methylation cycle. If you have CBS ++ then any sulfur produtcs could make you worse. Again, important to get some testing done. A good ND (naturepathic) can help with these types of testing. Depending on your Methylation status, you could try hydroxy-B12, less stimulating and will convert to Methyl-B12 as needed, but...depends on your methylation status.

If you continue to use B12, try a lower dose. Same with TMG. Go low and slow and build up. B12 may or may not be the key to your depression. Again, testing will help identify what you need. Look up Pyroluria and see if you fit those symptoms. That was a key for me. I also had MTRR++ and require Methyl-B12.

There's a lot to consider here. And randomly trying different supplements may not be the best idea, although you may eventually find something that will work. But, wouldn't it be nice to know more about what is going on so you can customize your supplements to what you really need? Testing is important. Or, at the very least, do lots of research and try and determing what is going on. Read about under and over methylation, pyroluria, etc...

Here's one good site for pyroluria, https://therivertorecovery.com/pyroluria/

Here's one of my favorite sites that may help determine which type of depression you might have and how to treat it:

http://www.balancingbrainchemistry.co.uk/peter-smith/1/Brain-Chemistry-HOME.html

Anyway, hang in there. I'm much older than you and went through heck for 5 years until I had proper testing done and started taking the proper supplements now I'm feeling soooo much better! You will feel better, but it might take some time so preservere!

Cheers!
 

garyfritz

Senior Member
Messages
599
You should run the 23andMe or Dr. Yasko's Methylation test. Then you can find out if you are a under or over methylator.
I have my 23andMe results. How do you tell from that if you're over- or under-methylating? I've looked at symptom lists online and I match a few symptoms from BOTH lists. I'm not convinced I'm either.

If you have CBS ++ then any sulfur produtcs could make you worse. Again, important to get some testing done.
I have ++ CBS A13637G (see my sig) and I've never noticed a problem with sulfur foods -- I eat lots of eggs, meat, etc. I've never understood what the CBS and sulfur was supposed to be doing to me.

http://drjockers.com/cbs-mutation-low-sulfur-diet/ says CBS people must avoid alpha lipoic acid, and I've been planning to do an ALA-based mercury detox program. Does anybody know about that? But he also says CBS people should avoid methylcobalamin, and I have a huge need for it.
 

Valentijn

Senior Member
Messages
15,786
I have ++ CBS A13637G (see my sig) and I've never noticed a problem with sulfur foods -- I eat lots of eggs, meat, etc. I've never understood what the CBS and sulfur was supposed to be doing to me.
Indeed, the CBS SNPs people talk about don't actually do anything. They're a myth based on Yasko's inability to understand research.
 
Messages
22
I have my 23andMe results. How do you tell from that if you're over- or under-methylating? I've looked at symptom lists online and I match a few symptoms from BOTH lists. I'm not convinced I'm either.

I have ++ CBS A13637G (see my sig) and I've never noticed a problem with sulfur foods -- I eat lots of eggs, meat, etc. I've never understood what the CBS and sulfur was supposed to be doing to me.

http://drjockers.com/cbs-mutation-low-sulfur-diet/ says CBS people must avoid alpha lipoic acid, and I've been planning to do an ALA-based mercury detox program. Does anybody know about that? But he also says CBS people should avoid methylcobalamin, and I have a huge need for it.

One sign is to check your histamine levels. If they are high, then you may be under-methylated. Also, if you are "COMT --" then you have a high need for methyl-donors, and possibly be low in Dopamine. Here's a great collection of methylation information: http://heartfixer.com/AMRI-Nutrigenomics.htm.

Possibly those who are low in Serotonin, Dopamine could be under-methylators. But, you could also have Pyroluria. Some times under-methylation and Pyroluria go and in hand as it seemed to be with me.

I'm MTRR++, COMT --, CBS ++, NOS + etc...

I've had my ammonia and sulfur levels tested in the past and they were normal. I've had a test that showed I had a high need for Glutathione, which contradicts being CBS++. I also feel benefits from Taurine and some times from NAC. Although after a week or two on NAC (very small doses) it seemed to make me feel nauseous. I can take Glutathione and feel better not worse. I take high amounts of Methyl-B12 as I need it.

I haven't heard that people with CBS ++ should avoid Alpha Lipoic Acid. I've been taking it for the past month or two, and it seems to be helping, yet my insomnia is worse now and I've been investigating what the cause is. ALA can help with blood sugar issues, energy, etc... I need both. It helps to recycle Glutathione (and vitamin c) from what I understand and that might be why they say to avoid ALA if you have CBS++. But, I need glutathione. There's one doctor who you may heard of Dr. Ben Lynch who's got the MTHFR.net web site. He says treat the symptoms not the SNP. So, it would appear from my understanding that you might have an SNP like CBS++ but it might not be activated. So, what activates an SNP, I'm not sure. Maybe stress, toxins, etc...?

I've greatly improved my health and well being. Still have some minor issues at times and can't figure out the triggers whether it's my CBS status playing a roll, or something else. My biggest issue right now is insomnia. Not getting deep sleep, or waking up at 3-4 am every single morning.

Cheers,
 

garyfritz

Senior Member
Messages
599
I haven't heard that people with CBS ++ should avoid Alpha Lipoic Acid. I've been taking it for the past month or two, and it seems to be helping, yet my insomnia is worse now and I've been investigating what the cause is.
ALA chelates mercury. It's used to draw mercury out of the body. Brain too, since it can cross the BBB. But in order to do so with minimal damage and discomfort, you are (according to the Cutler protocol) supposed to take it frequently, so you keep an active level in your body throughout the process. The half-life is about 3-4 hours, so you're supposed to take ALA every 3 hours or so 24 hrs a day for at least 72 hours.

If you take it once or twice a day, it draws some mercury out, then 3 or so hours later it drops it. All over the place. And that can cause all kinds of problems. It's MUCH worse if you still have mercury amalgams in place.

One of the things that pretty much convinced me I have mercury issues was when I accidentally took some ALA. Some of my "B12 symptoms" flared up all of a sudden, worse than they'd ever been. I tried to figure out what had happened, and I realized I'd started taking a LEF supplement containing ALA, 2x/day. I stopped taking the supplement and the symptoms vanished within 48 hours.

I take huge doses of B12 to control some seriously crazy-making symptoms. Greg the b12oils.com expert could never explain why I needed so much. Over the past 4-5 months I've realized that a whole list of clues strongly suggests my symptoms are actually **mercury** symptoms, and the B12 has a protective effect. Or the B12 replaces B12 destroyed by mercury, not sure which. I'm convinced enough that I'm preparing to do some expensive and painful dental work so I can start doing the ALA chelation.

My biggest issue right now is insomnia. Not getting deep sleep, or waking up at 3-4 am every single morning.
Insomnia and nighttime agitation at 3-4am (which B12 didn't help) was one of the symptoms that flared when I accidentally took ALA. I suggest, **especially** if you have mercury amalgams in your mouth, that you stop the ALA immediately. See if your insomnia clears up. If you DON'T have ANY amalgams, then you might want to consider going on a proper ALA chelation protocol. The people on the Cutler Facebook group see some pretty dramatic improvements.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
One sign is to check your histamine levels. If they are high, then you may be under-methylated. Also, if you are "COMT --" then you have a high need for methyl-donors, and possibly be low in Dopamine. Here's a great collection of methylation information: http://heartfixer.com/AMRI-Nutrigenomics.htm.

One can also have high histamine and be 'overmethylated', if that's even a word.

And with all due respect, I would avoid that 'heartfixer.com' site at all costs. It's mostly grossly outdated, and/or just complete misinformation based a lot on Yasko, who's "work" @Valentijn has pointed out for several years now is not backed up by any credible research.

It's also very much worth noting that the doctor that runs the heartfixer site has many of these polymorphisms or 'mutations', and yet is perfectly healthy.
 
Messages
87
Hi there,
I hope this is going to the right place. I am currently very sick with CFS with nerve damage all over. I recently restarted the Fredd protocol with 1000mcg mb12
1000mcg ab12
100mg l carnitine
Started at 200mcg methylfolate ...now up to 1000
My issue is a constant need for potassium and more methylfolate
Symptom wise...I'm having exhausting diarrhea (never usually all have) These symptoms point to taking more potassium and more methylfolate
I'm taking 5000mg straight potassium a day and can't keep up with the need! I also eat it via food and drink coconut water
Any suggestions? I'm exhausted and tired of being sick at my stomach. Thank you!!!
 

Eastman

Senior Member
Messages
526
I think Freddd associates diarrhea with folate deficiency. Potassium deficiency may be linked to constipation. See this post of his.

Good luck.
 

CCC

Senior Member
Messages
457
@Nikki7 , we found adenosylB12 was off the menu for quite a while - even a small amount induced nausea. We also had to go very slowly with carnitine because it induced (more) fatigue. We still can't really manage carnitine l-fumarate.

Some of the others here had to take things very slowly - @Sushi @caledonia @ahmo ? Maybe they have some ideas about how you might take things a bit more slowly.

You're not taking high-dose B1 or B2 are you? Too much B1 seems to cause a bit of potassium thirst for us, and others have reported the same thing for B2.