B-12 - The Hidden Story

[Johnmac]

@John Mac I never thought of that but it makes sense. I assumed it was causing a detox or die off and hence the flu like symptoms. Have you found anything useful for your histamine attacks? Would they affect the gut?

Yep, they can affect the gut. Tho my main symptoms are brainfog & fatigue.

The way to retire histamine symptoms is to go low-histamine for a while, then carefully reintroduce:

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

It looked a big challenge at first, but doing it has proved easy because the results are pretty good.

My only remaining problem is my L. rhamnosus yogurt - it's the great gut-stabiliser, but it also generates histamine. So I have sometimes fixed my gut & given myself histamine symptoms simultaneously. But finding that balance is a relatively minor problem.

 

[drob31]

DAO should break down histamines. Still I wonder if your symptoms aren't related to something else...

 

[PeterPositive]

Hi guys,

Three days ago I hit a wall. I mean really hit it: flu-like symptoms,blurry vision, awful headache, brain dead, gut pain.

I've been doing pretty good with b12 but when I went from 2500 mcg Mb12 to 5000 and 5000 abB12 to 10,000, all hell broke out.

In addition to B12, here is what I'm taking now:

Folate 5,000 mg
Niacin 4,000 mg
Potassium 1,200 mg
Magnesium 1,000 mg
Calcium 700 mg
Seeking Health Trace Minerals Complex x2
Pure Encapulations B-Complex x2

Adding 10,000 mg folate seemed to pull me out of my spiral but I'm still far from baseline.

I have not added LCF. I wonder if I'm deadlocked there? I don't even know what LCF is supposed to do.

Any insight or guesses would be appreciated.

Why such a high niacin dose, if I can ask?
It seems like it will only push your need for methyl groups higher.

If you're trying to speed up your methylation cycle the niacin is acting like a powerful brake. Probably you would need far less folate and B12 with a much lower niacin dose.

Just my 2c.

 

[Jimbo39]

DAO should break down histamines. Still I wonder if your symptoms aren't related to something else...

If you were to guess, what do you think it would be?

I noticed black tea is a DAO. I've been trying to quit because caffeine causes cortisol surges but I find myself really craving it. I thought my body was craving caffeine but maybe it's wanting DAO?

This is a whole new field for me so it'll take some research.

 

[Jimbo39]

Why such a high niacin dose, if I can ask?

I started taking niacin as a vasodilator and to help me sleep. I forgot about FREDDD saying it can be used to prevent "over methylation". This is an example of trying to address one thing and compounding another. I'll cut back and see what happens.

 

[Jimbo39]

@derob31 I don't want to be hogging this thread but my mind keeps going back to LCF. What does it do?

 

[SMPN]

Hi, all. A silly logistical question. If one needs to totrate up to 10-20 mg of methyl b12, how is this really possible with ET lozenges that are only 1 mg each? Really, I'm going to consume half the bottle per day? Is there not a 5 mg option that is decent? Thank you!

 

[Johnmac]

It's a really good logistical question, especially when even low-ish does can give you tooth cavities.

My solution (there may be others) was to switch to the transdermal B12 oils, which provide better uptake anyway (more cellular penetration per mg of B12), and a more even ride.

 

[PeterPositive]

Hi, all. A silly logistical question. If one needs to totrate up to 10-20 mg of methyl b12, how is this really possible with ET lozenges that are only 1 mg each? Really, I'm going to consume half the bottle per day? Is there not a 5 mg option that is decent? Thank you!

Yes, 5mg lozenges are the way to go for that kind of dosage. I use Source Naturals or Solgar's 5mg and they work fine.

Transdermal oils can also be an effective alternative, if you can get them. (i.e. if you don't incur in issues with customs etc...)

 

[SMPN]

It's a really good logistical question, especially when even low-ish does can give you tooth cavities.

My solution (there may be others) was to switch to the transdermal B12 oils, which provide better uptake anyway (more cellular penetration per mg of B12), and a more even ride.

Thanks, Johnmac.

 

[SMPN]

Yes, 5mg lozenges are the way to go for that kind of dosage. I use Source Naturals or Solgar's 5mg and they work fine.

Transdermal oils can also be an effective alternative, if you can get them. (i.e. if you don't incur in issues with customs etc...)

Thanks, Peter. I actually just ordered the Solgar. Seems like they are a good company and their tablets don't have citric acid or fructose which I like.

 

[SMPN]

@Freddd
And Others-

I've read all 175 pages of this thread. I do not have ME or CFS. I'm a floxie, someone who's been damaged by fluoroquinolone antibiotics. My body has healed quite a lot over the past 3.5 years, but the nerve pain in my feet, which has improved, is still very much a problem that interferes with my life. I also have a little in my hands.

By b12 was about 350 right after the antibiotic exposure (never had it tested before). When I tried methyl b12 back then, my legs broke out in a brutal rash much like folliculitis. I eventually figured out it was b12 and stopped. Fast forward 18 months and a naturopath suggested I try hydroxy and adeno. I did and had no negative effects. Fast forward another 18 or so months and my b12 levels were way up but my symptoms were only a little improved. And that brought me to this thread.

Looking back and at my genetic testing, I think my b13 was always mediocre (unless it was normal and plummeted after Cipro). I also have gene mutations related to MTR and MTRR which relate to methyl b12 and how I apparently need more of it. So now I'm thinking my body just hasn't had what it needs to really heal.

So now, I've been on methyl b12, titrating up for the last 3 weeks. Right away, even with 1/4 of a 1 mg tablet held in my cheek for 60-90 minutes I felt an intensifying of my pain. I didn't feel it anywhere else. In other words, my foot neuropathy went from a 5/10 to a 7/10. It usually takes only a couple of hours and my feet and ankles are super tingly, twitchy, and sometimes achy too. These aren't unusual symptoms, but they are much worse than I had before. Numbness isn't something I had or have.

I guess I'd love to hear a little reassurance that these are start-up symptoms and the fact that my body reacted so strongly to methyl b12 is a positive. Because when one is in the middle of the pain, it's hard to be reasonable. Thanks for any thoughts anyone might have.

 

[CCC]

I'm answering this so maybe someone else with your symptoms can comment.

@caledonia has some documents linked in her signature that might help you. My guess is you might have gone too far and too fast. I don't know if you remember, but one lady in this massive thread (Lena) had a terrible time and could manage only a crumb of AdoB12 (we were like that), while others were in crumb-level amounts of mb12. it's so individual. They might suggest you back out a bit.

Now, pain isn't an issue in this house, but we suspect MTR/MTRR could be. It's been suggested the high dose of B2 we need could be a result of that. So, have a look through this summary of conclusions from several famous B2 threads (one is the infamous B2 I love you!)

Some people, like @ahmo need a particular form of B2 called FMN. We did for a few months, but we could switch to the cheaper b2 later on. Some people can't.

Also, have a look at Freddd's symptom list - there's one from Feb 16 that is complete, but the main difference between that and others is the inclusion of copper deficiency symptoms as they were a serious issue for Freddd.

I hope someone else with symptoms closer to your answers this, but if not, my response might give you a starting point.

 

[caledonia]

@Freddd
And Others-

I've read all 175 pages of this thread. I do not have ME or CFS. I'm a floxie, someone who's been damaged by fluoroquinolone antibiotics. My body has healed quite a lot over the past 3.5 years, but the nerve pain in my feet, which has improved, is still very much a problem that interferes with my life. I also have a little in my hands.

By b12 was about 350 right after the antibiotic exposure (never had it tested before). When I tried methyl b12 back then, my legs broke out in a brutal rash much like folliculitis. I eventually figured out it was b12 and stopped. Fast forward 18 months and a naturopath suggested I try hydroxy and adeno. I did and had no negative effects. Fast forward another 18 or so months and my b12 levels were way up but my symptoms were only a little improved. And that brought me to this thread.

Looking back and at my genetic testing, I think my b13 was always mediocre (unless it was normal and plummeted after Cipro). I also have gene mutations related to MTR and MTRR which relate to methyl b12 and how I apparently need more of it. So now I'm thinking my body just hasn't had what it needs to really heal.

So now, I've been on methyl b12, titrating up for the last 3 weeks. Right away, even with 1/4 of a 1 mg tablet held in my cheek for 60-90 minutes I felt an intensifying of my pain. I didn't feel it anywhere else. In other words, my foot neuropathy went from a 5/10 to a 7/10. It usually takes only a couple of hours and my feet and ankles are super tingly, twitchy, and sometimes achy too. These aren't unusual symptoms, but they are much worse than I had before. Numbness isn't something I had or have.

I guess I'd love to hear a little reassurance that these are start-up symptoms and the fact that my body reacted so strongly to methyl b12 is a positive. Because when one is in the middle of the pain, it's hard to be reasonable. Thanks for any thoughts anyone might have.

Just popping in so you can see my signature link. I have lots of info on methylation, and some stuff on B12 specifically.

I think it's possible the methyl B12 could be helping. My suggestion would be to reduce the dose until the pain is a level you can tolerate. Then gradually try increasing the dose as tolerated. You may be able to gradually increase over time as healing occurs.

The serum B12 test isn't really accurate because you can be low, normal or high and still be deficient. It's what B12 is in the cells that's important. The test measures what's in the blood, not the cells.

However, a low result does mean it's low. The cutoff point for low is different in different countries. In the US, I think 350 is borderline low. In Japan, it's definitely low.

 

[SMPN]

Just popping in so you can see my signature link. I have lots of info on methylation, and some stuff on B12 specifically.

I think it's possible the methyl B12 could be helping. My suggestion would be to reduce the dose until the pain is a level you can tolerate. Then gradually try increasing the dose as tolerated. You may be able to gradually increase over time as healing occurs.

The serum B12 test isn't really accurate because you can be low, normal or high and still be deficient. It's what B12 is in the cells that's important. The test measures what's in the blood, not the cells.

However, a low result does mean it's low. The cutoff point for low is different in different countries. In the US, I think 350 is borderline low. In Japan, it's definitely low.

Thanks, Caledonia. I'm at a level of pain I can handle. It's nothing new- just a more intense version. If it lasts for a couple of months, I can push through. It's just always a little scary when it feels like you're going backwards. I'm stable at 3 mg of b12. It isn't a big change from 1 or 2 mg. It was the initial doses of even 1/2 mg per day that caused a reaction. Going up hasn't changed the reaction much. Thanks for the time and words. I appreciate it.

 

[Seppo]

Hello you all, I had my mind blown last night when reading about the methylation cycle and the symptons of CFS and I realised that this is exactly what must be wrong within me. I'm very interested in starting Freddds therapy, but I was wondering if the 'shopping list' has been updated over the years? If so, could somebody please link it for me?

My story shortly: Doxicycline (antibiotic) for about a year straight after which a low dosage accutane for about year... Now I can go through the symptom list of CFS and say 'check' basically after every symptom.

 

[Eastman]

Hello you all, I had my mind blown last night when reading about the methylation cycle and the symptons of CFS and I realised that this is exactly what must be wrong within me. I'm very interested in starting Freddds therapy, but I was wondering if the 'shopping list' has been updated over the years? If so, could somebody please link it for me?

I don't remember seeing a completely updated list, although the loss of effectiveness of Jarrow's mB12 has been reported by some, including Freddd.

 

[South]

naturally occurring sugar in fruit is levulose not fructose

Well, fructose and levulose may be exactly the same molecule, just two different names.

Three websites that state that fructose and levulose are synonyms for the same molecule:
http://medical-dictionary.thefreedictionary.com/levulose
https://en.wikipedia.org/wiki/Fructose
http://www.monashscientific.com.au/Levulose.htm

I'm no fan of adding large quantities of fructose to low fiber processed foods, but I don't think there's anything wrong with a little added fructose to a balanced, fiber rich meal, even if that little bit of added fructose isn't still in a whole piece of fruit. Just doesn't make sense to me why that matters.

Not a politically correct opinion I have, in today's world of fructose bashing, but there it is.

 

[Munis]

Hi,

My B12 test reading was 150 . ( April 2016 ) . I am pure vegetarian (No milk, meat.egg etc.) for the last 10 years.
I am 40 yo. male.

Symptoms were feet numbness , unable to focus on anything and could not even get up from bed on most of the days , frequent falls since Oct 2015.
And bowel Incontinence since 2014.
Neuro Doctor suggested cyno Cbl last year , but I discontinued after 2 weeks.

Now again I have started Methyl Cbl after reading this forum this month , and am self injecting 4.5 mg a day of methyl Cbl .( SC injections).
Have found benefits by using methyl Cbl. , Pottasium and methyl folate .

I have some questions regarding B12 injections.

1. How do you carry so many injections when travelling abroad ?

2. How do you wrap them in a foil paper ? (to protect from light )

Thanks.

 

[SMPN]

Sorry for what I assume is a bit of an uninformed question. I started up methyl b12 and adeno b12. Had a definite response- neuropathy was way more active. Titrated up to about 4000 methyl and 3000 adeno over 2 months. Never really involved folate. Now, however, even small doses of folate (200) give me a sore throat and headache. Before b12, folate didn't do this. I understand this is a methylation issue and that there are different camps on how to approach this. It seems to me that I probably have to take a few days off or everything and start over with low doses of b12 and folate and titrate them together. Or, how much do I need the folate? I don't have massive fatigue and hundreds of symptoms. I have neuropathy. I realize the suggestion of doing just b12 and no folate must sound ridiculous. Thoughts from experienced people? Thank you.