What to do/take if sensitive to B12?

[seamyb]

Neil Nathan's book "toxic" (I'm a broken record on this tonight) talks about sensitivity to B12 in the context of mold issues. So, it might be an avenue to go down.

I've been helped greatly by B12 but I no longer take it. Anything that has ever made me feel better has been an antioxidant, including B12. I went down the methylation route, but I didn't get much benefit beyond B12. I feel it's the antioxidant properties, rather than the methylation cycle, which makes B12 beneficial to us.

 

[sometexan84]

3. Pernicious anemia. This is an autoimmune condition where the immune system attacks the Intrinsic Factor (IF). IF is what binds to the B12 in your stomach and carries it to the next stage of use. Your body will also produce limited amounts of it normally, which is why there's a max amount of B12 you can absorb at one time. So with PA your body suddenly has a lot less IF to bind with the B12 and you end up deficient, despite normal dietary intake. There are specific tests that can be used to diagnose PA in addition to serum B12, MMA and a CBC, which are: Anti-intrinsic factor antibody test and the parietal cell antibody test. They have varying degrees of sensitivity but can be useful. Pernicious anemia treatment requires lifelong monthly injections.

Wrong.

This is Autoimmune atrophic gastritis, where your body is destroying the intestinal epithelial cells, resulting in B12 deficiency and Pernicious anemia.

This is like an E. Coli thing... not an enterovirus thing, or even an ME/CFS thing

2. Intestinal malabsorption. This can be caused by a number of factors, such as celiac disease or irritable bowel disease. The intestinal wall becomes damaged enough and stops or slows the absorption of B12. A more rare cause might be a parasite like giardia or pork/beef tapeworm. If the underlying cause of the malabsorption can't be controlled or cured, then a lifelong, monthly B12 injection is required.

YES!

I mean, you're closer here.

Intestinal malabsorption is certainly a part of ME/CFS. But saying it's "caused by celiac disease or IBD" is misleading. Celiac is usually linked to Enterovirus, or another type of enteric virus.... IBD is too, just maybe less so than Celiac.

And Enterovirus is linked to ME/CFS of course. And this is where the intestinal barrier is damaged, and also absorption of B12 is effed up. But it's from the stomach acid mostly. EV infection directly damages the intestinal barrier... which is part of it. But the cells that produce the stomach acid are infected w/ EV, so the acid production is halted.

So you have low stomach acid, and that is why you can't absorb B12. Low stomach acid... another big ME/CFS thing.

B12 injection is not going to have any permanent effect on ME/CFS patients, regardless.

 

[sometexan84]

Let me know if you have any questions.

Where can I buy some B12 injections?

just kidding

 

[MagicalMe]

Wrong.

This is Autoimmune atrophic gastritis, where your body is destroying the intestinal epithelial cells, resulting in B12 deficiency and Pernicious anemia.

This is like an E. Coli thing... not an enterovirus thing, or even an ME/CFS thing


YES!

I mean, you're closer here.

Intestinal malabsorption is certainly a part of ME/CFS. But saying it's "caused by celiac disease or IBD" is misleading. Celiac is usually linked to Enterovirus, or another type of enteric virus.... IBD is too, just maybe less so than Celiac.

And Enterovirus is linked to ME/CFS of course. And this is where the intestinal barrier is damaged, and also absorption of B12 is effed up. But it's from the stomach acid mostly. EV infection directly damages the intestinal barrier... which is part of it. But the cells that produce the stomach acid are infected w/ EV, so the acid production is halted.

So you have low stomach acid, and that is why you can't absorb B12. Low stomach acid... another big ME/CFS thing.

B12 injection is not going to have any permanent effect on ME/CFS patients, regardless.

Hold up--we're not talking about this being the cause of CFS/ME (if CFS is, in fact a single entity and doesn't have numerous underlying causes depending on the patient). I was simply answering some questions posed by the OP, who struggles from Vitamin B12 Deficiency, as do I. Both of us have diagnosed Vitamin B12 deficiency, so Vitamin B12 injections are, in fact, a necessary and effective treatment.

Second, yes, it's correct to say that PA is caused by AAG, but because the OP asked for simplicity, I gave it. PA is usually referred to as an autoimmune disease, as people with other types of B12 deficiency (such as myself) are not usually diagnosed with pernicious anemia, despite having macrocytosis and extensive nerve damage. Most physicians usually save the PA diagnosis for when it's caused by autoimmunity.

However, there is no evidence that e.coli is connected to either. H. Pylori might be connected to AAG, but not e.coli or enterovirus. Most assessments believe the underlying cause to be genetic, like many autoimmune disorders.

Nor is enterovirus the cause of celiac disease, which is genetic. If there's a connection, it could be due to reduced immunity caused by both the autoimmune dysfunction and malnutrition. I suppose it's possible that with a compromised immune system a person with celiac or AAG might be more susceptible to infectious agents, but it's not the underlying cause of either.

IBD, however, is thought to be associated with e.coli, at the very least.

Any inflammatory condition of the bowel can potentially cause malabsorption of Vitamin B12. I'm unsure of the details surrounding the OP's B12 deficiency, so I merely went through the list of possible causes.

 

[MagicalMe]

@MagicalMe Thanks so much for your post, I think it brings up the super important point that some people can have normal or elevated serum B12 and yet also have high MMA, so serum b12 should NOT be relied on if someone has neurological or other B12 deficiency symptoms. Also, that many of these individuals don't respond to methylcobalamin.
I was thinking to make a post on this specifically when I had a chance as, a few years back, through my job, I pulled results from 100 people who had serum B12 and MMA done at the same time, and we found several cases like this. I was later able to follow the cases of 5-6 individuals who had high serum B12 and high MMA that didn't respond to methylcobalamin, but that normalized with adenosylcobalamin. I can not find this issue documented anywhere in the literature, and wasn't able to identify a responsible SNP (although I'm sure there is one), but I think this problem may be relatively common. You are definitely not the only one out there.

Yes! Given how long it took for me to receive a diagnosis (20 years!) and how nearly every doctor I met was totally unaware of metabolism disorders, let alone how to look for them, I'm guessing there are a lot of people with a hidden, undiagnosed Vitamin B12 deficiency.

 

[sometexan84]

However, there is no evidence that e.coli is connected to either. H. Pylori might be connected to AAG

Yea i did say the wrong thing there. Overconfidence... thought i knew that from memory, should have checked my notes. H Pylori is what i meant.

I'm unsure of the details surrounding the OP's B12 deficiency, so I merely went through the list of possible causes.

Hold up--we're not talking about this being the cause of CFS/ME

This is an ME/CFS forum. So I think you are safe to assume that little detail.

Vitamin B12 injections are, in fact, a necessary

This is certainly not true.

with other types of B12 deficiency (such as myself) are not usually diagnosed with pernicious anemia, despite having macrocytosis and extensive nerve damage

Yea, PA is not something commonly found in ME/CFS.

Your nerve damage is very common though... which is inflammation AND autoimmunity... yes, autoimmunity, turns out you do have it. Most of us do.

Macrocytosis, also common, in CFS

Nor is enterovirus the cause of celiac disease, which is genetic.

Celiac is as genetic as ME/CFS is ... which is some, i mean it's certainly a factor.

Enterovirus A and B are strongly associated w celiac. Like, very very strongly associated. But you're right that it's not been proven, just like enterovirus has not been "proven" in ME/CFS

IBD, however, is thought to be associated with e.coli, at the very least

along w a million other things. it's a very vague condition. Which is why i said it's slightly less associated w enteric virus infection. Inflammation here can have lots of causes. But, it's an enteric viral infection more often than anything else.

 

[GreenMachineX]

Interesting thread. I'm in the middle of trying to figure out where I went wrong with b12/folate because what worked a few years ago isn't working now (although symptoms are showing up in different order too).

 

[Wishful]

I'm in the middle of trying to figure out where I went wrong with b12/folate because what worked a few years ago isn't working now

It may not be anything you did wrong. ME changes over time regardless of what you intentionally do, and what worked before may stop working, and what didn't work before may start working. I strongly recommend retesting things occasionally, including what dosages are optimum for you. That includes foods. There are a number of foods that I've had to avoid, and then could tolerate again, and then had to avoid again. It keeps changing.

 

[GreenMachineX]

It may not be anything you did wrong. ME changes over time regardless of what you intentionally do, and what worked before may stop working, and what didn't work before may start working. I strongly recommend retesting things occasionally, including what dosages are optimum for you. That includes foods. There are a number of foods that I've had to avoid, and then could tolerate again, and then had to avoid again. It keeps changing.

Thanks for the reply. If I could just sleep, I feel like figuring all this out would be so much easier.

 

[Wishful]

If I could just sleep, I feel like figuring all this out would be so much easier.

It would be easier to figure ME out if we weren't suffering from ME.

Sleep is important. My day pretty much ends at 2:30 PM, because if I do any sort of physical or cognitive exertion past that, I only manage a few hours of sleep. Luckily, reading fiction doesn't trigger my insomnia. However, the longer days keep tempting me to do something else.

 

[GreenMachineX]

It would be easier to figure ME out if we weren't suffering from ME.

Sleep is important. My day pretty much ends at 2:30 PM, because if I do any sort of physical or cognitive exertion past that, I only manage a few hours of sleep. Luckily, reading fiction doesn't trigger my insomnia. However, the longer days keep tempting me to do something else.

lol yep!

 

[GreenMachineX]

It may not be anything you did wrong. ME changes over time regardless of what you intentionally do, and what worked before may stop working, and what didn't work before may start working. I strongly recommend retesting things occasionally, including what dosages are optimum for you. That includes foods. There are a number of foods that I've had to avoid, and then could tolerate again, and then had to avoid again. It keeps changing.

After increasing my b12 a little the past month and started eating 4 whole brown eggs per day, I'm now sleeping so much better. I can sleep between 6 and 8 hours, and wake up 4-6 times in between without taking anything extra to sleep. Last night I got 8 hours and woke up 4 or 5 times I think. Huge improvement from 1 hour total. Going to increase b12 a tiny bit more tomorrow also. It seems I only need 200mcg folate, any more gives me anxiety and makes my hypochondria worse (can't stop thinking something is wrong and I'm about to die). On the flip side, only taking 200mcg gives me a mild histamine dump presenting as itchy skin and occasional sneezing. Only taking 300mcg methylcobalamin right now, tomorrow will be 400mcg.

Bloodwork showed a low side of normal b12 but folate was above range.

 

[Wishful]

I can sleep between 6 and 8 hours, and wake up 4-6 times in between without taking anything extra to sleep.

I have frequent wakings too. The duration of each sleep period is affected by conjugated linoleic acids (found in ruminant fat and dairy) and cis-linoleic acid (found in various seed oils). I recommend paying attention to whether your sleep pattern changes if you have either of these fatty acids during the day (too close to bedtime doesn't seem to work for me). I'm curious whether this is something specific to my ME or whether it's more common.

 

[GreenMachineX]

I have frequent wakings too. The duration of each sleep period is affected by conjugated linoleic acids (found in ruminant fat and dairy) and cis-linoleic acid (found in various seed oils). I recommend paying attention to whether your sleep pattern changes if you have either of these fatty acids during the day (too close to bedtime doesn't seem to work for me). I'm curious whether this is something specific to my ME or whether it's more common.

Ruminant fat as in animal fat? Every meal I eat has chicken, eggs, or beef so I'd never know if I respond poorly to that. And I usually have almonds and macadamias every day as well.

 

[GreenMachineX]

Update here....been using hydroxycobalamin and tolerating it better than methyl, but still freaking with some kind of induced deficiency...no îdea what it is though as it presents weird. And even folinic acid with the hydroxo is stimulating. Might try folic acid instead...