b12 nightmare

[tasha1907]

hello everyone,
hope your all ok today!

Just wondering if anyone can offer any advice... I am been treating lye disease for a couple of years.. got to a point where i was functioning not quite 100% maybe 80.. however I have developed chemical and food sensitivities in the last 6 months ... I was down to 3 foods for a while but have luckily added in 10 or so since then.... I have become quite depleted in a lot of nutrients and working on building them back up again.

B12 symptoms where kicking in cold feet , weakness in chest and breathlessness /sighing .. tried methyl b12 for a couple of weeks and had a weird racing brain reaction / my skin peeled on my hands and I felt like I was about to jump out of my body constantly... switched to cyano had another horrible reaction similar but the added misery of constant internal vibrations from head to toe..

I am now trying hydrox I am on a tiny dose a day 100mg and the good news is the vibrations are gone my mood is better but feel so out of it so sleepy and slightly stoned with a tiny bit of body anxiety nothing like what was happening my memory is a bit rubbish as well..also since taking any sort of b12 I have increased nephropathy my feet are cold and feel weird and painful to stand on in bare feet - heart palps are also improved but still there.

I also have tried methy folate couldn't tolerate so upped my green veg - i stopped eating green veg yesterday and feel better for it but how do I get folate in?

also eating bananas / coconut water and taking zinc, vit d , magnesium and Iron - I am so sensitive to supps that is takes a while to add them in ..

What does anyone think am I on the right path with the hydrox or is it going to go pear shaped I dont think high doses via a shot will work for me at this time but I just want to know If I am doing the right thing or if anyone has any advice or if they had any similar reactions to hydrox?

I think its quite obvious there is a gene mutation maybe mthfr... I can't really justify the testing for the moment so looking to figure out this methylation mystery by trial and error - this b12 thing is so tricky to get right

 

[Wishful]

Does increasing B12 have any noticeable benefits? If not, you could try minimizing it in your diet.

Do your chemical and food sensitivities have a consistent delay? I'm all too familiar with type IV sensitivity, which has a very consistent delay. I have other sensitivities, but they vary in their mechanisms.

It's reassuring to see that someone else has 'sighing' as a symptom. I don't know what it means, but it's there.

I have become quite depleted in a lot of nutrients and working on building them back up again.

We're all different. I lived on cornstarch for a year or so, and aside from sore gums if I forgot to take the occasional VitC tablet, I didn't notice any signs of nutrient deficiency. My experience certainly convinced me that we don't run out of nutrients all that quickly, even on a nutrient-free diet.

 

[tasha1907]

Hey Wishful ,
Thanks for the reply ! Supplementing with B12 increased My symptoms .. I’m now left feeling worse than when I was deficient . I have gotten worse as the day went on with the hydrox so I think I will just have to focus on foods a bit more going forward .. yes some have a delay some are instant I actually wonder if there is a link between visual and reactions - which sounds like a mental issue which I suppose it is but the reactions are very physical . Yes the sighing takes me by surprise sometimes .. always good to hear someone in the world is experiencing something similar it makes it less weird
That’s amazing how little you lived off - i couldn’t take any supps either so there was definitely some deficiency creeping in .. I have read a bit on methylation and b12 on this forum today and god I really don’t know where to begin I think I will just try Taking a break and going even slower in a week

 

[Wishful]

I think I will just try Taking a break and going even slower in a week

I think that's a good choice. Sometimes you lose track of what you're trying to accomplish and what factors in your life are changing, so it helps to take a break and maybe start fresh.

I've pretty much ignored the methylation stuff. To me it's a bunch of theories that I don't have any confidence that they apply to me. Some people feel better on a complex methylation regime, but is it because it's the theory being correct, or the placebo effect, or some mechanism that is completely unrelated to the theory?

To me, such theories are things that may suggest an experiment that has a better chance of working than something chosen completely at random. If it doesn't make a noticeable improvement, then I add it to the list of 'doesn't work', regardless of how wonderful the theory sounds.

BTW, I never had any good response to B12. I did have one time where it made me severely suicidal.

 

[judyinthesky]

There are a few studies on B12 not being beneficial if overdosed.

 

[drpub]

hello everyone,
hope your all ok today!

Just wondering if anyone can offer any advice... I am been treating lye disease for a couple of years.. got to a point where i was functioning not quite 100% maybe 80.. however I have developed chemical and food sensitivities in the last 6 months ... I was down to 3 foods for a while but have luckily added in 10 or so since then.... I have become quite depleted in a lot of nutrients and working on building them back up again.

B12 symptoms where kicking in cold feet , weakness in chest and breathlessness /sighing .. tried methyl b12 for a couple of weeks and had a weird racing brain reaction / my skin peeled on my hands and I felt like I was about to jump out of my body constantly... switched to cyano had another horrible reaction similar but the added misery of constant internal vibrations from head to toe..

I am now trying hydrox I am on a tiny dose a day 100mg and the good news is the vibrations are gone my mood is better but feel so out of it so sleepy and slightly stoned with a tiny bit of body anxiety nothing like what was happening my memory is a bit rubbish as well..also since taking any sort of b12 I have increased nephropathy my feet are cold and feel weird and painful to stand on in bare feet - heart palps are also improved but still there.

I also have tried methy folate couldn't tolerate so upped my green veg - i stopped eating green veg yesterday and feel better for it but how do I get folate in?

also eating bananas / coconut water and taking zinc, vit d , magnesium and Iron - I am so sensitive to supps that is takes a while to add them in ..

What does anyone think am I on the right path with the hydrox or is it going to go pear shaped I dont think high doses via a shot will work for me at this time but I just want to know If I am doing the right thing or if anyone has any advice or if they had any similar reactions to hydrox?

I think its quite obvious there is a gene mutation maybe mthfr... I can't really justify the testing for the moment so looking to figure out this methylation mystery by trial and error - this b12 thing is so tricky to get right

For years now I've known that there are several nutrients that make my symptoms much much worse. The biggest culprits in order of severity are folates (of all types), synthetic B6 and B3, choline, and copper. As a result I've adopted a nearly pure Carnivore diet. Of all the possible dietary strategies it's the only that keeps me the most stable. It also helps me avoid the "carb comas" that I sometimes get after eating.

It took me a very long time to make the associations as to what nutrients in what foods were causing me the most trouble. In the beginning it was hard to make any association at all because prior to my illness I could eat anything I wanted. For most of my life I had no food sensitivities at all.

For a while I was worried about eliminating folates for fear of deficiency. There is soooo much heavy marketing out there for methylfolate that you'd think it was the cure for all disease, but for me it's all hype. Most people don't know that around half of your daily folate requirements are met by your gut bacteria. Here is what I know about folates in case it helps you at all.

Serum folate is nearly a useless measurement because it only reflects recent exposure. My serum levels are always low. That's fine if you recycle folate efficiently. Since the body stores months worth of folate at a time, and since it's heavily recycled, it's the functional folate markers that matter. The tests you care about are:

• RBC Folate - Labcorp range is > 280 ng/ml. Mine stays at about 475 even on Carnivore diet. RBC levels take a few months to change so they reflect cellular folate levels very well.
• Urine FIGLU - Tests your functional capacity to create Glutamine from Histidine. I would only go out of my way to test this if the other tests make it seem useful. Recent folate exposure can quickly correct this marker. It's not a great cellular indicator.
• Homocysteine - Even with MTHFR C677T +/- and A1298C +/- my HCY is low at 7.0. If your HCY is high or high-normal you may need extra folate. Probably the most sensitive functional marker.
• CBC / MCV - Folate/B12 anemia is characterized by low hemoglobin with overly large RBCs. My RBC size is always at the small end of the range, not the large.

If the functional markers of folate are normal then it's unlikely that extra folate is going to change your situation. If folates exacerbate your symptoms then my advice is to avoid them all together. It's a myth that everyone needs more folate. At least IMO.

My B12 levels are always high because of my diet. I can supplement physiological doses but not super high doses. As it accumulates m blood levels quickly shoot up to twice the upper end of the reference range. Once it gets there it just makes me feel worse.

In terms of methylation, all the info out there basically says that I'm an under-methylator and that I need to make more SAMe. While SAM doesn't worsen my symptoms like folate/B12/B6 does, even a whopping 4g/day of SAMe doesn't improve my cognitive symptoms at all. It just raises my HCY to well over the safe range. Honestly, I've spent so much time worrying about methylation that the whole thing just feels like a giant rabbit hole for me. YMMV. I really don't think it's the cause of my symptoms though.

Thank you for your post! I know that my hypersensitivity to vitamins (especially folates) is an acquired symptom of this disease so it helps me to see that other people have the same issue. In addition to their role in methylation, folates are heavily involved in cell division and DNA/RNA replication. My guess is that excess folates and other vitamins are exacerbating the existing instability of neurons by some yet to be discovered mechanism.

On a side note, recently did a plasma amino acids test and found that I'm very deficient in Glutamine and insufficient in several others. That shouldn't happen when eating 150-200g of protein per day. Blood homeostasis of amino acids is tightly controlled by various mechanisms. So it makes me feel like all of this is caused by disruptions in the Glutamine-Glutamate-GABA cycle. I plan to make a lengthy post about it in the near future. But if extreme anxiety states are part of you panoply of symptoms, that's at least a different avenue you might look into. I'm new to PR so I don't know if it's well covered territory or not.

I hope some of this helps. I wish I had more in the way of solutions to offer.

 

[MCT23]

@drpub
Did you ever figure out if you had the gaba/glutamate issue. I remember reading about a Dr who found most his MCS patients had an imbalance, although it was high glutamate ...not low

 

[Viala]

This makes one think if high doses of b12 are actually safe. Usual dose is 1mg and that's enormous 400 times of the recommended daily value. It is simply not possible to absorb all of this vitamin, our intrinsic factor gets used fast so we absorb about 1% of 1000mcg dose, which is a mere 10mcg. We get 50% of 1mcg dose and this absorption percentage goes down fast. Some people do not have enough intrinsic factor so they will not absorb this vitamin at all.

We also need other vitamins to proccess that excess b12 and that's where things get more complex, because we may be deficient in other vitamins and even when we take a multivitamin, we have no idea if this b combo will not cause a further depletion in some other vitamin. It is possible that bad reactions to b12 are not caused by b12 itself, especially when we are deficient in cobalamin, but because high doses of b12 may create deficiency in other vitamins and that may cause worsening of our symptoms.

Do not push through if you react badly to b12, trying a lower dose is a great idea and if 100mcg will not work for you, you may try even lower doses or test other types of b12. I couldn't take b12 at all for a long time even though I am surely deficient.