Started taking B6 and feeling funny. Help Please. :(

PennyIA

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Wow, 3 months of not walking? I'm glad you were able to start walking again. It's amazing that a supplement can do such a thing, but we are quite sensitive to supplements around here.

Did you have any other symptoms of neuropathy while you were unable to walk?
My initial onset symptoms were right side 'weird' feelings... sort of numbness and tingling, sort of like wearing an itchy sleeve or sock... it's like it just didn't sit right on my skin and made me feel like there was something between my nerves and the sensations I was supposed to be. This would come and go and came more frequently and lasted longer until I hit that three month mark. Additionally, my vision would blur. And I'd have balance issues - if I was walking, I'd have enough time to find something to grab onto... but it was just 'weird'. I got screened for anything and everything, got told I was having migraine auras even though I wasn't experiencing any migraines... which after nine months of this coming and going, I didn't accept, because if you are getting migraine auras every single day, multiple times a day for nine months? Sooner or later, you'd have at least a stress headache.

The (mis)diagnosis became that it was probably mild TIA events, even though I had none of the typical warning signs... I could talk, equal strength in both arms, smile evenly, etc.

Then one morning, I got up and took two steps from my bedside to my dresser and dropped to the floor. I couldn't figure out what had happened, but assumed I'd stood too fast or something... so I slowly stood back up and landed on the floor again. It took me three months before I regained the ability to walk without assistance because I couldn't keep my balance. My mind was telling me I was falling (even if I wasn't) and would try to correct... and blam, on the floor I would go. At this time, the (mis)diagnosis was that I'd had a super small stroke (not found on MRI still even though I'd had five of them by now)... and that the only thing damaged must have been one of the portions of the brain that manages balance.

Oh, and the whole time, they knew I was taking B6, but because it was a small dose, they dismissed it as a possible cause. My mother got diagnosed at this time with b6 toxicity and encouraged me to get tested for it... it took about four years to convince a doctor to test me because they felt it wasn't worthy of being tested for because it was "impossible to become toxic on such a small dose". I finally got a bunch of doctors in the room with me at mayo and insulted their intelligence, insinuating that if it was so impossible, what was the harm in running the test and proving me wrong. sorry, I'll stop venting... but that one just got to me for the longest time...

After three months, I was able to walk with just severe dizziness, which receeded after a few weeks. The nueropathy continued for several more years.
 

boo85

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Thanks for your help, @caledonia

You've been really helpful for me on my journey towards healing.

I feel like I've taken a turn for the worst. Two days ago I got a 1000mcg hydroxyB12 injection, like I have gotten done 15 - 20 times beforehand. I've had no trouble with B12 injections before. I even took 200mcg of methylfolate the morning of the injection. Yet the reactions I got from it was either overmethylation, or it made the neuropathy that I got from the B6 even worse.

The night that I went to sleep after having my 1000mcg hydroB12 injection, I kept waking up and having disrupted sleep, with anxiety and paranoia.

Yesterday, my arms were weak, and I kept getting a pain in my right leg. I could feel it was the nerves. In my breakfast smoothie, I added pink salt and potassium.

Also when I was out and about, I stopped at the store and got a small can of coconut water. It didn't seem to make much difference, aside from the glucose hit.

While driving, I felt so tired. I fell asleep in the dentist waiting room (I hardly ever sleep during the day.)

I was able to drive home. I then made a drink of potassium, pink salt and magnesium (amino acid chelate).

Ended up taking a nap for an hour and I felt a bit better after that. Then a couple of hours later, around 5pm, I took 60mg B3 and felt better within the hour.

The thing is, I didn't want to stop methylation, because then I'd be stopping healing. I try to stop methylation as a last resort. But I had no choice but to stop it because it was getting so bad.

My symptoms are weak arms, cape-like tightness of my shoulders, back and arms. Sometimes pains of the nerves in my right leg. Wired but tired feeling. Anxiety. Afraid of having a stroke. Unco-ordination.

I just seem to be stuck between depression, low B12 symptoms, or overmethylation. I just want to be normal. Really. :(

I'm thinking of cutting right back.

What level of methylfolate do you think I should take with 50mcg of B12 per day?

Also, caledonia, what was your lowest dose of B12 and methylfolate and how long and how often, and with which dose, did you titrate up? What level of B12 and MF are you on now?

edit: I just read that you are currently up to 50mcg of B12 per day. Is that right? Do you take methylfolate as well with that? What size dose did you start out with?


This is what my doc had me do - start with potassium, and gradually increase until you feel better. If you go too far you will start to feel worse. So you want to be in the "sweet spot". Then do magnesium, same method. If you take too much, it will make your bowels very loose, even diarrhea. So if that happens, just back off some, and that will be "your" dose. Your sleep should be improved at that point too. Then do the salt. There will be a sweet spot where it tastes pleasantly salty. You should stop craving salty foods. If you take too much, it will taste overly salty and yukky.
I'm just wondering if I have a high tolerance to magnesium since this has been my daily magnesium routine for the past few years now and I've never gotten loose stools from it or anything.

2 x magnesium (total magnesium in each 325mg from oxide, heavy, 507mg and amino acid chelate 150mg. Manganese 6mg as amino acid chelate and Vitamin B6, 60 mg.

1 x magnesium amino acid chelate 500mg equivalent to elemental magnesium 100mg

Yes, it's fine to mix mag, potass and salt altogether. Like someone on here said, it tastes like "liquid unicorn". Bottoms up!
Yes, when I was making the drink, I remembered that someone named it the "unicorn drink" :)

Is it ok to mix a bit of glucose powder with the magnesium, potassium and pink salt? It just tastes too salty to me otherwise...

Should I be increasing my water intake when taking electrolytes/salt?

Is it ok to take my pink salt/potassium/magnesium mixed in with my morning smoothie?

My morning smoothie is banana, coconut milk, cinammon, vanilla powder, melted ghee and coconut oil. And occasionally some dairy such as cream or greek yogurt. Does this sound ok?

I just want to make sure that nothing else interferes with the absorbtion of the potassium and pink salt. But if I can disguise the taste, as well as start the day right with the correct electrolytes, that'd be great.

Do you recommend any other electrolytes to add to the mix?

Sorry for all the questions. :)
 
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boo85

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My initial onset symptoms were right side 'weird' feelings... sort of numbness and tingling, sort of like wearing an itchy sleeve or sock... it's like it just didn't sit right on my skin and made me feel like there was something between my nerves and the sensations I was supposed to be. This would come and go and came more frequently and lasted longer until I hit that three month mark. Additionally, my vision would blur. And I'd have balance issues - if I was walking, I'd have enough time to find something to grab onto... but it was just 'weird'. I got screened for anything and everything, got told I was having migraine auras even though I wasn't experiencing any migraines... which after nine months of this coming and going, I didn't accept, because if you are getting migraine auras every single day, multiple times a day for nine months? Sooner or later, you'd have at least a stress headache.

The (mis)diagnosis became that it was probably mild TIA events, even though I had none of the typical warning signs... I could talk, equal strength in both arms, smile evenly, etc.

Then one morning, I got up and took two steps from my bedside to my dresser and dropped to the floor. I couldn't figure out what had happened, but assumed I'd stood too fast or something... so I slowly stood back up and landed on the floor again. It took me three months before I regained the ability to walk without assistance because I couldn't keep my balance. My mind was telling me I was falling (even if I wasn't) and would try to correct... and blam, on the floor I would go. At this time, the (mis)diagnosis was that I'd had a super small stroke (not found on MRI still even though I'd had five of them by now)... and that the only thing damaged must have been one of the portions of the brain that manages balance.

Oh, and the whole time, they knew I was taking B6, but because it was a small dose, they dismissed it as a possible cause. My mother got diagnosed at this time with b6 toxicity and encouraged me to get tested for it... it took about four years to convince a doctor to test me because they felt it wasn't worthy of being tested for because it was "impossible to become toxic on such a small dose". I finally got a bunch of doctors in the room with me at mayo and insulted their intelligence, insinuating that if it was so impossible, what was the harm in running the test and proving me wrong. sorry, I'll stop venting... but that one just got to me for the longest time...

After three months, I was able to walk with just severe dizziness, which receeded after a few weeks. The nueropathy continued for several more years.
Thank you for sharing your story, Penny.

How did you put up with those symptoms for 4 years? :jaw-drop: I would have gone crazy!

The doctors definitely should have known that prolonged use of B6 can cause neuropathy. That should have been the FIRST thing the doctors asked you.

Even some people are sensitive to a once-off 5mg dose. Vitamin B6 is VERY MUCH toxic to people, even with tiny amounts. I think the medical profession very much under-rates the effects, both good and bad, that supplements can do for people. I no longer believe that, for better or worse, supplements will simply give you "expensive urine." They also don't like being told what to do.

If a car is blue, doctors will insist that the car is not blue, it is yellow, even when the yellow car is right in front of them because that's what their textbooks and experience says!

Yes, I agree with you. They really don't like it if you insinuate that perhaps they could maybe be wrong...? Doctors really need to change their attitude and be more open-minded and focus on more what the patient is saying. The more you insist on tests, the more they dig their heels in because "you don't have it!" Do they think it's fun for people to be sick? Do they think we want to spend our lives and money having the tests just because we have nothing better to do? The fact that we are going to them for help, as a last resort, shows how serious we are with our symptoms.

Yeah, you really need to take control of your own health. It's the only option. We are the only ones who truly care about our health and have to live it. Always go by your instincts. Thank goodness for the Internet.

How did you repair the neuropathy caused by the Vitamin B6? And what doses did you take?
 

PennyIA

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The whole reason I was taking B6 was to lower homocysteine (doc orders - folic acid, b6, b12 and of course, I didn't know any better and took the synthetics).

Switching to P5P and methylcobalamin on their own did nothing.

My toxicity levels dropped as soon as I stopped taking b6, but I was still having horrid nueropathy.

The methylation supplements - methylfolate specifically, seemed to have done the biggest improvement and within two months of starting methylation my nueropathy resolved. I wasn't up to full dose methyl folate at the time... probably around 5 mg per day (I take up to 3 times that now).

I think part of the problem is that the minute you state supplements... their brain doesn't distinguish between types/bio availability/etc... Unless they specialize in it? They have NO KNOWLEDGE about the differences in methylfolate and folic acid. I've explained my 'evidence' that methylfolate is good for me, folic acid is bad for me, etc when my doctor wanted to know why I was suddenly having better days. And not even a week later, I got a call from my doctor that he thought I should start taking folic acid. um. no. I'll be happy to take my methylfolate... oh, yeah - same thing. um. NO, it's NOT the same thing. (sigh)

There was a recent study about the ineffectiveness of supplements... and I had to wonder if they had subclassed the testing between bio-available forms, synthetic forms and folks with methylation issues and non-methylation issues if they wouldn't have learned something more useful.
 
Thanks for your help, @caledonia
I feel like I've taken a turn for the worst. Two days ago I got a 1000mcg hydroxyB12 injection, like I have gotten done 15 - 20 times beforehand. I've had no trouble with B12 injections before. I even took 200mcg of methylfolate the morning of the injection. Yet the reactions I got from it was either overmethylation, or it made the neuropathy that I got from the B6 even worse.
There is a lag-time before methylation starts cranking. This is called the honeymoon period. Depending on the dose. Rich Vank was reporting 6-8 weeks on doses about like yours. Mine was more like 12 weeks on teeny tiny doses. Freddd reports 3 days on very large doses. Then your body will need potassium like crazy and it may also be detoxing metals. That can all make you feel worse.

The thing is, I didn't want to stop methylation, because then I'd be stopping healing. I try to stop methylation as a last resort. But I had no choice but to stop it because it was getting so bad.
It sounds like there is some kind of roadblock going on, possibly potassium. You can't really heal without potassium, as potassium is used in cell rebuilding. You're going to have to figure out what this roadblock is.

My suggestion would be to get a better source of potassium on board if possible. Lots of us are doing ok with Now Potassium Gluconate. I take this four times a day, otherwise I will start to go into deficency.


What level of methylfolate do you think I should take with 50mcg of B12 per day?
I would trying something like 10-20mcg methylfolate.

Also, caledonia, what was your lowest dose of B12 and methylfolate and how long and how often, and with which dose, did you titrate up? What level of B12 and MF are you on now?
My doses are so tiny, it's ridiculous. I finally settled on 16mcg of methycobalamin, 4 mcg adenosylcobalamin. These are taken in 4 divided doses per day. Then I take 1/64 of one Holistic Health All In One multi (a Yasko product), which has methylfolate + a bunch of co-factors, some of which are downstream of methylfolate, like methionine. I take this only two days a week. It's kind of hard to say how much methylfolate or equivalent that is, but let's say 1mcg per week.

After two years, just recently, I've finally been able to increase methylcobalamin to 20mcg per day. Everything else is the same. Except my magnesium needs have greatly lessened and my potassium needs have greatly increased. And I don't need salt supplementation any more.

I'm just wondering if I have a high tolerance to magnesium since this has been my daily magnesium routine for the past few years now and I've never gotten loose stools from it or anything.

2 x magnesium (total magnesium in each 325mg from oxide, heavy, 507mg and amino acid chelate 150mg. Manganese 6mg as amino acid chelate and Vitamin B6, 60 mg.

1 x magnesium amino acid chelate 500mg equivalent to elemental magnesium 100mg
I was taking as much as 1800mg of magnesium glycinate at one point. Now I'm taking 450-600mg.

I can't tell from your description how much you're taking. I do know that the magnesium oxide is a poorly absorbed form. Go with the "equivalent" amount when computing.

Why does the first magnesium have manganese and B6 with it?

Is it ok to mix a bit of glucose powder with the magnesium, potassium and pink salt? It just tastes too salty to me otherwise...
That would be fine. But if it's too salty, cut back on the salt. It should be pleasantly salty, not yukky. Your body uses taste to tell you how much is needed.

Note: I tried the grey Celtic sea salt dissolved in water and it was wasn't salty enough. Then when I added more, I felt weird. My body likes regular table salt much better. On the other hand, a few grains of Celtic salt licked from the palm of my hand is ok. Go figure.

Should I be increasing my water intake when taking electrolytes/salt?
No need to as far as I know.

Is it ok to take my pink salt/potassium/magnesium mixed in with my morning smoothie?

My morning smoothie is banana, coconut milk, cinammon, vanilla powder, melted ghee and coconut oil. And occasionally some dairy such as cream or greek yogurt. Does this sound ok?

I just want to make sure that nothing else interferes with the absorbtion of the potassium and pink salt. But if I can disguise the taste, as well as start the day right with the correct electrolytes, that'd be great.
I think that would be ok to mix all those together.

Do you recommend any other electrolytes to add to the mix?
Yes, I ended up adding in some calcium in capsule form. Just one capsule per day works for me. I don't mix that in with my drink.
 

boo85

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Many thanks for your response, caledonia. :):):)


There is a lag-time before methylation starts cranking. This is called the honeymoon period. Depending on the dose. Rich Vank was reporting 6-8 weeks on doses about like yours. Mine was more like 12 weeks on teeny tiny doses. Freddd reports 3 days on very large doses. Then your body will need potassium like crazy and it may also be detoxing metals. That can all make you feel worse.
Between May and November 2013 I probably had around 10 hydroxy B12 injections.

Then in the past few months, since July this year, I've had probably around 10 more injections...

Maybe this is a delayed reaction, I don't know...



It sounds like there is some kind of roadblock going on, possibly potassium. You can't really heal without potassium, as potassium is used in cell rebuilding. You're going to have to figure out what this roadblock is.

My suggestion would be to get a better source of potassium on board if possible. Lots of us are doing ok with Now Potassium Gluconate. I take this four times a day, otherwise I will start to go into deficency.
I'm taking potassium chloride salt at the moment, but I've written down your suggestion of gluconate and will keep it in mind. :)

I put potassium in my morning smoothie, which equals out to about 800mg of potassium in the morning after I drink it.

How much potassium per day did you used to take at most?

How much potassium do you take now?



I would trying something like 10-20mcg methylfolate.
Thanks, I'll try that dose with 50mcg of methylB12 each day and see how I go.

I think the shaking I was getting while trying to sleep was from lack of methylfolate, maybe?

I seem to have gotten better since taking methylfolate along with B12.



My doses are so tiny, it's ridiculous. I finally settled on 16mcg of methycobalamin, 4 mcg adenosylcobalamin. These are taken in 4 divided doses per day. Then I take 1/64 of one Holistic Health All In One multi (a Yasko product), which has methylfolate + a bunch of co-factors, some of which are downstream of methylfolate, like methionine. I take this only two days a week. It's kind of hard to say how much methylfolate or equivalent that is, but let's say 1mcg per week.

After two years, just recently, I've finally been able to increase methylcobalamin to 20mcg per day. Everything else is the same. Except my magnesium needs have greatly lessened and my potassium needs have greatly increased. And I don't need salt supplementation any more.

I was taking as much as 1800mg of magnesium glycinate at one point. Now I'm taking 450-600mg.
Thank you for sharing your doses. :D

How do you divide your doses so accurately? Do you crush it up and then divide the powder? I've done that before after seeing someone talk about it on here, before I bought a pill splitter. But even with the pill splitter, it's hard to divide into accurate doses once the pill gets more and more cut.

I can't tell from your description how much you're taking. I do know that the magnesium oxide is a poorly absorbed form. Go with the "equivalent" amount when computing.

Why does the first magnesium have manganese and B6 with it?
Oh my gosh. Thank you for pointing that out to me. I didn't even realise my magnesium had B6 in it. I mean, I read it before, but didn't realise that B6 was a problem and didn't think to go back and check my supplements for it. Who would think magnesium would have B6 in it, right?

I've been taking 2 of those tablets per day for the past 2 - 4 years. So that's 120mg per day of B6 consistently for years.

Do you think this would have contributed to my neuropathy?

As far as I know, oxide is what works for me with my muscle cramps. I'm not happy about the B6 being it those tablets I was taking, but I think the oxide is what works for my muscles...

I'm going to stop taking this magnesium tomorrow and try a different brand without B6.

Do you know anything about magnesium ororate?

I'm really annoyed that when I was having peripheral neuropathy almost 2 years ago, none of the doctors I saw, and not even my neurologist, bothered to look at what supplements I'm on and point out that long term B6 can cause neuropathy.

Not even my naturopath, after looking at my bottles of vitamins, caught that my mag had B6 and that I shouldn't be taking it for a long period of time (had taken it for over 2 years at that point.) I'm so angry that no-one told me! I wasn't even tested for high B6.

What's the point of having "experts" when they don't know squat about their expertise?

I feel so stupid for not putting the connection together of B6 hidden in my magnesium, but I only learned of potential B6 toxicity within the past couple of weeks. I should have researched more about B6 but oh well, I'll try not to beat myself up about it... :vomit:

I found others who were in a similar situation as me - taking brewers yeast or supplements with B6 in it and then experiencing neuropathy symptoms - http://www.peoplespharmacy.com/2010/11/21/excess-vitamin-caused-neuropathy/

Is there something wrong with taking manganese?

I take this magnesium for anxiety, is it ok? http://www.chemistwarehouse.com.au/...re's+Own+Magnesium+Chelated+500mg+75+Capsules

That would be fine. But if it's too salty, cut back on the salt. It should be pleasantly salty, not yukky. Your body uses taste to tell you how much is needed.

Note: I tried the grey Celtic sea salt dissolved in water and it was wasn't salty enough. Then when I added more, I felt weird. My body likes regular table salt much better. On the other hand, a few grains of Celtic salt licked from the palm of my hand is ok. Go figure.
I've been taking pink salt for the past month. I would take pinches of it straight from the packet and eat it like that, then sprinkle more on my food.
 
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I put potassium in my morning smoothie, which equals out to about 800mg of potassium in the morning after I drink it.

How much potassium per day did you used to take at most?

How much potassium do you take now?
I'm taking the most I've ever taken right now, which is 3780mg per day, taken in four divided doses.

I think the shaking I was getting while trying to sleep was from lack of methylfolate, maybe?
I was thinking foot or muscle twitching from lack of electrolytes. I had a sleep study and they found this problem. I was waking up like 20 times an hour and didn't even know it.

Occasionally I would have a bigger twitch where I would wake up enough to actually realize it. Sometimes it would feel like somebody was shaking the bed, but nobody was there. Kind of spooky!

How do you divide your doses so accurately? Do you crush it up and then divide the powder? I've done that before after seeing someone talk about it on here, before I bought a pill splitter. But even with the pill splitter, it's hard to divide into accurate doses once the pill gets more and more cut.
My exact methods are outlined in "Start Low and Go Slow" linked in my signature below.


I've been taking 2 of those tablets per day for the past 2 - 4 years. So that's 120mg per day of B6 consistently for years.
Do you think this would have contributed to my neuropathy?
Yes - you've already discovered that B6 is problem for you, and that you're overdosed on it. Might want to check all the rest of your supplements.

As far as I know, oxide is what works for me with my muscle cramps. I'm not happy about the B6 being it those tablets I was taking, but I think the oxide is what works for my muscles...

I'm going to stop taking this magnesium tomorrow and try a different brand without B6.

Do you know anything about magnesium ororate?
I don't know about orotate specifically, but any kind of mag except mag oxide should be fine - mag taurate, mag glycinate, mag citrate, etc.

I'm really annoyed that when I was having peripheral neuropathy almost 2 years ago, none of the doctors I saw, and not even my neurologist, bothered to look at what supplements I'm on and point out that long term B6 can cause neuropathy.

Not even my naturopath, after looking at my bottles of vitamins, caught that my mag had B6 and that I shouldn't be taking it for a long period of time (had taken it for over 2 years at that point.) I'm so angry that no-one told me! I wasn't even tested for high B6.

What's the point of having "experts" when they don't know squat about their expertise?

I feel so stupid for not putting the connection together of B6 hidden in my magnesium, but I only learned of potential B6 toxicity within the past couple of weeks. I should have researched more about B6 but oh well, I'll try not to beat myself up about it... :vomit:
This is why we sort of have to be our own doctor....shouldn't be that way, but it is. Now that you know about the hidden B6, maybe you will make a lot more progress on the neuropathy.
Is there something wrong with taking manganese?
Manganese is fine if you need it. That's one of the ones I'm quite low in and I do supplement for that. I think this is pretty typical for people with methylation issues and/or ME patients.

It doesn't say what form the mag is. Could be more mag oxide, especially as the price is cheap (mag oxide is the cheapest form). It might say on the label if you have a bottle on hand.

The mag I take is a powder dissolved in water. That works well for me and is highly absorbable. I take it four times a day, along with the potassium. This is similar to the MTHFRade that Ben Lynch came up with. I just do my own personal recipe according to my needs.
 

boo85

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@PennyIA

I stopped taking all supplements that have B6 in it. I roughly calculated that over the past 3 years, I've been taking too much B6. For the first 2 years I took a magnesium tablet that had 60mg of B6 in it, and then for the past year, I think, I took double that amount of magnesium, so that's 120mg of magnesium per day.

I've been reading pages of this thread - http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1 -that talks about people who have been mistakenly taking B6, hidden in their supplements (magnesium, prenatal vitamins, multivitamins.) They had been taking B6 from months to years, with the amount of total B6 each day ranging from as little as 10mg up to 200 - 300 mg. I think, from what I can gather, B6 builds up over time and reaches toxic levels and affects the neuro system.

I'm going to go to the doctor next week and ask to be tested for B6 because I had been unknowingly taking doses of it for years, hidden in my magnesium. I read that the B6 stays in the muscles and fat and so that's why it can take 6 months - several YEARS for it to leech out. Even after B6 levels are back down to normal (less than 20), the effects and damage of B6 toxicity can remain until the nerves have healed themselves, which takes time.

Do you know much about this Penny?

Have you seen this thread? http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1

Do you know if I can do anything to speed up the process of healing from long-term, toxic B6 doses?

Does exercising help?

I'm not even sure whether it was low B12 that has caused my condition for years (neuropathy).

I have been having really bad mood swings and nausea. Some days I feel SO depressed, but then hours later I can feel ok (not 'happy' but ok.) I get cape-like prickling from my back and shoulders.

What type of fat should I eat in order to repair the nerves (myelin)? I keep my omega-6 reduced since a lot of our diet is way too high in omega-6 which can cause problems on its own. I eat only stable, more saturated fats like butter, ghee, extra virgin olive oil, animal fat, virgin coconut oil, etc, and some dairy.

I don't eat any sugar, or grains (wheat, rice, quinoa, buckwheat is all out.) I follow different 'diets' but the one that most aligns with how I eat is Low Carb, High Fat, along with no grains or sugar.

I take between 50 - 100 mcg B12 per day, sometimes up to 250mcg B12 if I feel I can handle it without becoming overmethylated. An hour before taking B12, I take 1/4 of whatever dose of B12 I'm taking, I take the equivalent amount of methylfolate. For example, if I'm taking 100mcg of B12 that day, then I'll take 25mcg of methylfolate an hour beforehand.

I'm really just hoping that my diet and supplements and B12 can save me. I'm very scared of going through these withdrawal symptoms and B6 detox symptoms. I feel so tired from being sick for the last 2 years. It could have all be prevented if multiple doctors neurologist (x 2), naturopath, had taken a look at my supplements and warned me about taking B6 over a long period of time. I feel like I've lost so much time.

And knowing that I'm looking ahead to more uncontrollable symptoms of nausea, depression, nerves, mania, it's too much.
 
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PennyIA

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No, but I do think it feels very validating to see posts from others who got toxic on smaller doses.

I think there are several factors at play and the medical field isn't really clueing in.

1) They often refuse to test you for b6 toxicity unless your dose is 50 to 100 times normal dose (normal dose is around 2 mg, so unless you are taking 100 -200 mg), they are going to try to tell you it's not possible to become toxic on a lower dose. But that thread you pointed out? Shows a multitude of patients that have.

2) Genetics... I swear that there's something in my family and probably others - that impairs the ability to process B6. (and there is a TON I don't know about it and may never discover)...

BUT, I think the following (at a minimum) applies....

-- If you have normal genes, and take lower than 50-100 times the dose, your body probably has a chance to 'process' that dose and won't store overflow into the muscles. Hence, most people probably can't get toxic on lower doses.

BUT... if your genetics impairs the ability to process it? That means that you probably can't take the lower doses... so even 5mg per day (the dose I was on for about three years) started to become toxic within three months (the amount of time between feeling fine and NOT being ok at all). They say that approx. 50% of the public has MTHFR defects... I don't even have the start of a clue how to identify which gene might impair ability to break down B6, but I'd bet anything that part of the current 'health crisis' is tied to all the artificial supplements, including folic acid in fortified flours... and the fact that there are so many who can't tolerate it.... but I should get off of the soap box.

So, I do think doctors UNDER TEST for B6 toxicity... and the only reason I finally convinced them to, was actually insulting them and insinuating that they were idiots and were going to have to show me normal test results before I would quit badgering them to test me.
 

PennyIA

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Exercising didn't help me (as proven by their attempts at PACE/GET around the time I finally got diagnosed).

When I asked the doctors what might help, they looked at each other and shrugged their shoulders (I was at Mayo Clinic).

Time might have been part of it... but I do think it was methylfolate, methylcoabalamin and some of the other supps (ALC, NAC, etc) that helped me. As within a few weeks of getting started on those is when I saw some pretty quick changes. It was several years after stopping and I had very little recovery until I started methylfolate even though I'd been on methylcobalamin for a while.

I didn't have any ideas at the time - but now if I knew now what I knew then - I would have tried various natural detox things... not the detox type which purges you... but the types of things they suggest for muscles - like the epsom salt baths, foot soaks, etc... because, really... even if they aren't proven, the idea in my head is that if the b6 has parked itself in your muscles like a toxin, then I'm open to ideas on how to try to expel it. Since I didn't try them at the time, I can't vouch in any way for any of them... and of course, not all of them are standardized to the point where anyone can prove they really do work.

But I do know it was AWFUL and being 18 months free of that horrid parathesia, I'm thrilled to be where I am. I don't know if I'm 'cured' of the b6 toxicity as I still have something - me/cfs isn't on my charts - but I match all the ICC and CCC criteria and I have normal B6 levels. Per my doctor, he can't imagine my current symptoms are still related to b6 toxicity (because of course, it's not in my blood any more, ergo - he thinks it's all gone).
 

PennyIA

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I wanted to follow up on this, glad I found this thread again. I have heard magnesium also helps 'clear' out too high of b6 levels. I can't tolerate it as a supplement... BUT I was also starting epsom salt baths around the time I started taking methylfolate and didn't connect that it might have helped. I started them mostly because I didn't expect them to help or to provide any relief, but it was s simple lifestyle addition and seemed harmless. I do find that I have a lower chronic pain level in general when I take the baths regularly and I still haven't had any nueropathy returned.

I'm still digging and learning. I have classic CCC health issues + extra things. I'm trying to sort out if maybe even though the nueropathy is gone, do I still have symptoms from b6 toxicity. Also digging into EDS and other conditions that might explain my frequent spontaneous rib dislocations (boy, do I wish that would stop - it HURTS!). I just want to get back to living a full life without so much of this cr*p.
 

AndyPandy

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@boo85 I recently discovered I have toxic levels of B6. 713 when top of the acceptable range is around 110.

Was most recently taking around 33mg for 1 year. Previously 8mg for around 4 years and for about 5 years before that took a PMT supplement with 100mg.

Had no idea about potential for B6 toxicity. Possibly the cause of my progressive neuropathy.

I've stopped the supplements now and hope the levels come down. Feeling less "poisoned" since I stopped the supplements, but this could be due to other things I am trying just now.

Clearly not everyone will have this problem with B6, but it is good to know there is the potential for problems in some cases.

Best wishes Andy
So I stopped taking all supplements with B6 in them. My levels are now back to 110, but the neuropathy remains. I have just started methylation treatment and some modest magnesium supplementation, so I will see if this improves the neuropathy as it seems to have done for @PennyIA

Best wishes, Andy
 

PennyIA

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So I stopped taking all supplements with B6 in them. My levels are now back to 110, but the neuropathy remains. I have just started methylation treatment and some modest magnesium supplementation, so I will see if this improves the neuropathy as it seems to have done for @PennyIA

Best wishes, Andy

I wish you luck, I know I saw pretty quick improvement when I didn't expect it. I also know I can't tolerate any magnesium supplement taken orally - so epsom salt baths were the thing that worked for me. I've heard horror stories of how long it takes to resolve nueropathy - so I'll be honest, not knowing that magnesium might be a factor, I kind of assumed the worst that I'd live with it for a really long time. When it went, I was pretty happy. The only other symptoms I have left are more likely CFS/ME or an exasperation of CFS/ME by the b6 toxicity... and/or maybe EDS - which if I have to live with it until they sort things out, I guess I can. Doesn't mean I have to like it, huh? But - getting full sensation back, not having pins & needles 24x7, severe dizziness, temperature disparity, etc... all of that is SO MUCH better.
 

dannybex

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I wish you luck, I know I saw pretty quick improvement when I didn't expect it. I also know I can't tolerate any magnesium supplement taken orally - so epsom salt baths were the thing that worked for me. I've heard horror stories of how long it takes to resolve nueropathy - so I'll be honest, not knowing that magnesium might be a factor, I kind of assumed the worst that I'd live with it for a really long time. When it went, I was pretty happy. The only other symptoms I have left are more likely CFS/ME or an exasperation of CFS/ME by the b6 toxicity... and/or maybe EDS - which if I have to live with it until they sort things out, I guess I can. Doesn't mean I have to like it, huh? But - getting full sensation back, not having pins & needles 24x7, severe dizziness, temperature disparity, etc... all of that is SO MUCH better.
That's great to hear that the epsom salts helped. One other thing to consider as well, possibly due to genetic snp issues, is that b2 (riboflavin) is needed to convert B6 into it's active form. Perhaps if one has some sort of genetic factor (like MAO-A), or one isn't taking any b2, then the b6 will build up to toxic levels.

I used to have instant neuropathy even with tiny amounts of b6 as well, but found that taking higher amounts of b2 helped. Here's a link explaining why b2 is needed not only for b6, but also folate and niacin metabolism:

http://lpi.oregonstate.edu/mic/vitamins/riboflavin

tagging @AndyPandy
 

dannybex

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My toxicity levels dropped as soon as I stopped taking b6, but I was still having horrid nueropathy.

The methylation supplements - methylfolate specifically, seemed to have done the biggest improvement and within two months of starting methylation my nueropathy resolved. I wasn't up to full dose methyl folate at the time... probably around 5 mg per day (I take up to 3 times that now).
Hi @PennyIA and all,

Very interesting about the folate helping the most. (Wow, you take 15 mgs a day!?)

Anyway, I'm wondering if this study might explain why folate helped. These were patients with high homocysteine due to a 'cystathionine synthase deficiency'.

When they were treated with b6, their 'folic acid' levels dropped.

"In al of our cases treated with pyridoxine in which folate levels were measured, there was a gradual and progressive decrease in serum and red cell folic acid activity to low levels. In no case was this accompanied by haematological changes. Changes in behaviour with marked irritability did occur, and these could be reversed by giving folic acid.

These observations indicate that patients with homocystinuria who are being treated with pyridoxine
should always have a small supplement of folic acid. One patient's good response to pyridoxine only became stabilized after folic acid was added to the treatment regimen, which suggests that intermittent remethylation of homocystine occurred with dietary folate availability."

I'm still having trouble with b6 and/or p-5-p if I take if for more than a couple days -- took a super-low dose b yesterday and today, and had very uncomfortable muscle jerking and RLS-ish type symptoms all through the night and earlier today -- this after FOUR years of trying to figure this out, so I'm wondering if this b6-depleting-folate would apply to others (like us) or just those with this cystathionine synthase deficiency?

???
 

alicec

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it took about four years to convince a doctor to test me because they felt it wasn't worthy of being tested for because it was "impossible to become toxic on such a small dose".
@PennyA, I've just been directed to this thread which I initially missed. Could you tell me what the testing involves?