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B12 for probably non-ME/CFS symptoms

liverock

Senior Member
Messages
748
Location
UK
Thanks much for your post, @liverock! As a matter of fact, I **DO** have H. Pylori. I don't remember when -- 8-10 years ago? -- but I remember my MD tested me for it, and I've got it. I thought the main effect of HP was that it increased your risk of stomach ulcer. I didn't realize it could lower acid levels (while increasing ulcer risk!?), and I certainly didn't realize it could cause symptoms like mine!

I don't remember why my MD tested me for it, but I don't think she took any action as a result of discovering I had it. I will very definitely ask her about it when we start working on my methylation.

I will check the links you posted. Meanwhile if you have any specific recommendations for ways to defeat HP, I would love to hear them!

@garyfritz If you have tested + for Hpylori then your doctor should have given you a triple therapy for about 2/3 weeks comprising a PPI(acid reducer) and 2 forms of antibiotic.

The acid reducer draws out the HP infection from where it is hiding in the stomach cell walls allowing the antibiotics to kill it off. After the treatment another test should be done to ensure the infection has cleared.

There are a lot of supplements such as Mastic Gum, that can be used to alleviate symptons but they dont KILL OFF the infection. As long as the infection is there it is still at work creating possible worst diseases in later life.

A lot of your symptoms are probably due to the HP affecting your thyroid. Killing off the infection and getting your stomach acid up will help to get a lot of symptons alleviated though it usually takes time.

http://www.ncbi.nlm.nih.gov/pubmed/21073613
 

garyfritz

Senior Member
Messages
599
Wow. Thanks VERY much for the info, @liverock! I can't imagine why my MD tested for HP and then did nothing with the positive result. Maybe my memory is faulty. I'll check with her the next time I see her.

EDIT: The Harvard link you posted indicates that L-glutamine helps protect against HP damage. That's good, because I've been taking L-glutamine at bedtime ever since a broad-spectrum blood test showed I was clinically deficient, 5 years ago. I wonder if it was low because my body was using it to defend against HP? In the same blood test I was also extremely low in Zinc.
 
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liverock

Senior Member
Messages
748
Location
UK
The Harvard link you posted indicates that L-glutamine helps protect against HP damage. That's good, because I've been taking L-glutamine at bedtime ever since a broad-spectrum blood test showed I was clinically deficient, 5 years ago. I wonder if it was low because my body was using it to defend against HP? In the same blood test I was also extremely low in Zinc.

@garyfritz Hpyroli will lower both Glutamine and zinc. ZincCarnosine has been found to help in repairing the gut when used in conjunction with the doctor Triple Therapy mentioned previously.

http://www.drnibber.com/stomach-ulcers-heres-why-zinc-is-not-enough
ZnC shows strong potential as an anti-Helicobacter pylori agent, thereby adding to its role as an anti-ulcer supplement because this stubborn bacteria often causes gastric ulcers. Triple therapy, the standard pharmaceutical treatment for H. pylori eradication, has been shown to be more efficacious when used in combination with ZnC than when compared to triple therapy alone (5). These results have been attributed to its bactericidal, anti-urease and anti-adhesive properties toward H. pylori specifically (6). Overall, the actions of ZnC, together as a unit, make it a suitable pairing for gastric mucosal protection and optimal gut health.
 

garyfritz

Senior Member
Messages
599
Sure does sound suspicious. Thanks for the great info and references, @liverock! I'll let you know when I get a chance to talk this over with my MD -- after we get this case of shingles knocked out.
 

garyfritz

Senior Member
Messages
599
Update: 23andMe report should be her in 2-3 weeks.

In the meantime, I'm waiting for my case of shingles to clear up before I make any other changes. But I am noticing changes that I do NOT like.

I mentioned I started taking Readisorb methylB12 last July, and within a month I was sleeping much better. I tried going off B12 in mid-September and my sleep deteriorated. Re-started B12 in late Sept and from October through March I slept better than I've slept in 20 years.

But since March I feel the improvements slipping away. I started waking up in the night with agitation and muscle twitching. For the past month I've been waking up almost every night with problems -- sometimes more than once a night. I have to go take another hit of B12 to settle myself down and get back to sleep. (Thank God that still works.) I haven't gotten to the "hours of nightmarish thrashing" phase yet, hopefully because the B12 is keeping that at bay.

I also notice a lot more muscle agitation / tingling / RLS / fingernails-on-chalkboard-feeling / etc during the day. That was driving me absolutely nutzo last summer, but it totally went away during the B12 "honeymoon period." And now it's coming back.

So it seemed that the Readisorb methylB12 (roughly one 500mcg spray each night) made some huge improvements for almost 6 months -- and now it seems to be losing its effectiveness. Does anyone have any suggestions what might cause that or what I should do?
* Why isn't it working as well? Am I getting adapted / addicted to the B12?
* Should I expect the B12 to gradually lose effectiveness until I boost to a much higher B12 dosage?
* Maybe I did some low-level healing with the low levels of B12 and now I need to bring in the big guns?
* Should I just ramp up my Readisorb doses, or start some of the Jarrow 5mg tabs, or...?
* Maybe I need to add some of the other important cofactors -- methylfolate, adenosylB12, maybe SAM-e, etc?
* Any other ideas?

I also need to pursue @liverock's excellent leads about H.Pylori. I can't find the lab results but I found notes that say my doc said I had it back in 2006. I'll be raising that with my MD when my 23andMe report gets here.
 

liverock

Senior Member
Messages
748
Location
UK
@garyfritz

Hpyroli will cause trouble absorbing B12. Consuming alcohol can also increase Hpyroli infection which can make B12 absorption more problematical.

http://www.ncbi.nlm.nih.gov/pubmed/12485119
http://www.ncbi.nlm.nih.gov/pubmed/10809040

Low magnesium and iron deficient anemia can also help cause restless leg syndrome.

Upping the B12 appears to work so its probably best to double the dosage until you get tested for Hpyroli.
Taking 400mg of Magnesium citrate an hour before going to bed might help as well as alcohol depletes that too.
 
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garyfritz

Senior Member
Messages
599
But H.Pylori can't affect the absorption of a sublingual, can it? It would just make you more likely to be deficient from your dietary sources.

Iron deficient anemia is unlikely. My iron runs high. My ND actually tested me for hereditary hemochromatosis (negative results) because my iron levels AND my two boys' levels were all high. But it turns out I can control it with simple dietary adjustments -- eating calcium (dairy, etc) after eating high-heme meat.

I take 500mg of magnesium (as oxide, citrate, alpha-ketoglutarate, taurinate, aspartate, see here) at bedtime, whether I've had alcohol recently or not.
 

liverock

Senior Member
Messages
748
Location
UK
But H.Pylori can't affect the absorption of a sublingual, can it? It would just make you more likely to be deficient from your dietary sources.
@garyfritz

Sorry, I didn't explain that very well. (it was a long day :sleep:)

Yes, you can increase serum B12 by sublingual and bypass the low absorption by the gut. However, Hpyroli can lower B12 blood levels indirectly by another route other than lowering stomach acid levels..

Hpyroli bacteria can enter the bloodstream from anything that breaches the gut barrier such as an ulcer or leaky gut caused by Hpyroli. This increase in blood bacteria will cause higher inflammation which will lower serum B12 levels as its an antiflammatory. Try increasing your B12 dosage to 1,000mcg

http://www.medicalnewstoday.com/releases/55432.php
 

garyfritz

Senior Member
Messages
599
Well, I'd been doing about 1000 already, and still often needed more in the night.

Yesterday I took 1000 in the evening, then another 1000 at bedtime. Then I woke up in the night with the worst heebie-jeebies I've had in a while. Another shot of B12 didn't help all that much. It took a while for me to settle down. I don't know if last night was an anomaly, or if I'm getting really resistant, or what. But I sure did NOT like being in that nasty state again.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
I wonder if low potassium could be causing your symptoms? I'm thinking my anxiety/fluttery heart sensations are low potassium, based on how they settle down after I take a quarter teaspoon of no-salt in water. I know that potassium requirements go up when you goose the methylation cycle, and I wonder if just b12 alone will get methylation going enough to require more potassium.
 

garyfritz

Senior Member
Messages
599
Hm, I doubt it, Sue. I've started taking 99 Mg of potassium at bedtime, and I still had the bad night last night. (Or maybe that's not enough to make a dent?)

Taking some B12 early tonight, to fight off some RLS that's driving me buggy. Hopefully that and a bedtime dose will give me a better night tonight.
 
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sueami

Senior Member
Messages
270
Location
Front Range Colorado
The RDA for potassium is 4700 mg, so 99 is a tiny fraction and for most people nowhere near enough to alleviate a potassium deficiency. 1/6th of a tsp of no-salt has 530 mg (15 pc of the rda) and a banana has 420mg or so. An avocado has 900, as does a baked potato. Coconut water is a quick and easy food source of potassium.

My doc actually recommended a 1500 mg potassium with K pill from a canadian pharmacy, but I've stopped taking it b/c I got nervous about gastro-intestinal tract damage if it gets stuck somewhere and dissolves against the lining of my stomach or gut. I find the no-salt to be a quick and easy fix and I can titrate doses easily. I've been taking 1/6th to 1/4 of a tsp at a time several times a day, as I notice symptoms.

I'd take a look at a potassium rich foods list and see how much you might be getting from your diet. I think supplementing in the 400-500 mg range when you feel these symptoms might give you some interesting information, depending on whether your symptoms resolve.
 

whodathunkit

Senior Member
Messages
1,160
The 99 mg dose for pills is supposed to keep people from taking too much at once. :rolleyes:

Get powder (gluconate or citrate or even chloride) and put it in juice. Pills give me a terrible stomach ache, but powder in juice does not both my stomach at all. You still can't take too much at one time or it will cause sides and maybe a stomach ache, but it's definitely a gentler, better way to take it.

I agree with @sueami about about the dose.

If you put a quarter or half teaspoon in some juice a couple times per day it will probably alleviate your symptoms safely, while not bothering your stomach.

The biggest danger with "no salt" is that some people don't understand that no salt is potassium, a mineral that can cause as many or more problems than table salt (especially if not balanced properly with the right amount of sodium). Mainstream medicine has promoted "no salt" as safer than table salt, and this most emphatically not the case except for a very small segment of the population.

So people (especially geriatrics who have been unreasonably made afraid of table salt based on a small, poorly-conducted, over-hyped research study back in the '60's or early '70's that for some reason wormed its way into our cultural consciousness) overuse "no salt" while not taking in enough sodium. THAT is dangerous. The correct potassium/sodium balance is vital to life and must be maintained, or problems ensue.

Also, overdosing on potassium can harm people with kidney problems and other serious health problems. But I highly doubt sueami would ever take enough to give her problems, or that you will, either. It's more likely that you'd get unpleasant side effects from it (diarrhea, gas, stomach upset, etc.) long before you can take in enough to kill you. Unless you put a few tablespoons in some liquid. In which case you'd probably be hard pressed to gag it down.

See where I'm going with that? It's all about using common sense.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
Potassium is scary on both ends of the spectrum, low and high. I noticed symptom alleviation with small doses though, 1/8th of a teaspoon, which is well below 15 percent of RDA.
 

garyfritz

Senior Member
Messages
599
For the past month I've been waking up almost every night with problems -- sometimes more than once a night. I have to go take another hit of B12 to settle myself down and get back to sleep. (Thank God that still works.)
I spoke too soon. B12 alone worked miraculously for 6 months, but lately even a B12 refresh in the night is not always keeping the heebie-jeebies at bay. Last night I woke 4-5 times and took 500-1000mcg each time, and it didn't always help. I need to figure out what else I'm missing. My case of shingles is mostly cleared up now (just residual nerve pain) so I will start experimenting with other things: larger doses of methylB12, add some adenosylB12, methyl folate, B complex, etc. Maybe SAM-e, TMG, LCF, ALA...

Question: most sources say the half-life of B12 is 6 days, though some put it well over 100 days. If the half-life is so long, why does the benefit fade so quickly? Why does 1000mcg at bedtime result in a few hours of no-RLS and good sleep, and then a few hours later I wake up wired & twitchy? And why does another shot of B12 (usually) help so quickly? It seems to be flushing through my body -- or being consumed/destroyed -- in a matter of hours or even minutes. Do I need to supplement with B12 several times a day? What does it take to keep a good level in my body at all times, so hopefully these problems don't resurface?
 
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garyfritz

Senior Member
Messages
599
Bother. Just discovered my doc has left town for a month. So I won't be able to have her look at my 23andMe report for a while, and unless I want to start over with another doc, I'll have to wait a month to handle the HPylori.

Any thoughts on the B12 half-life and how often per day to dose?
 

whodathunkit

Senior Member
Messages
1,160
I think how mB12 affects you changes over time, depending upon the status of other things.

I have read that if you're mB12 depleted the half-life can be only hours, but I haven't researched to verify that. I've also read that it only takes 3 days to become completely depleted of it, but I haven't verified that, either.

Adenosylcoblamin (a different type of B12) is different. Your body needs that, too, but it is stored in the mitochondria. If you have a good supply of adB12 it takes several months to become completely deficient in that form of B12.

IMO when you should take mB12 nd how it affects you depends upon the state of your health, your snps, your stress level, alcohol intake, and other things. When you should take it to get the best results may not stay static over time.

I hesitate to say something like "the half-life of mB12 changes over time", because scientifically speaking I don't think the half-life of any substance can change. But your body can process it more efficiently or less efficiently over time, thus changing the uptake of the mB12 into your cells, as well as the level of excretion, etc. So it *seems* like the half life may change.

For example, after I got my first mB12 injection my body seemed to crave big doses of it for months. It was like, "Eureka!" Loved it. I was going as high as 5mg/day injectable, plus 20 mg/day (or sometimes more) sublingual, spread throughout the day. I injected in the morning then took sublinguals at fairly regular intervals spaced throughout the day. Sleep was good, and for a while it seemed that mB12 was actually making me sleepy during the day after I took it. But that went away.

I had also worked my way up to commensurate amounts of folate.

But now, after months of large doses, I seem to have gotten myself "topped out "with mB12. It's like my reservoir is now full. I don't need as much of it daily, and in fact large doses per day now adversely affect my sleep. I've taken it way down. This seems to happen to other people, too. I find I'm doing much better on much smaller amounts of B12. I typically take a 1mg injection in the morning, with maybe a 5mg sublingual mid-day (but usually not). That's all.

If I was you I would experiment with different doses of mB12, maybe adding some folate. Recommend to try some adenosylcobalamin as well, but definitely only take that in the morning. It can be stimulating. The same with LCF. If you try it, do it in the morning. Also, with LCF, start with small doses (like half a 500mg capsule) until you see what works for you.

Also recommend not to try SAM-e, TMG, or any other methyl donors until you see how you do on those foundational supplements mentioned above.

I can't emphasize strongly enough the need to be able to listen to your body for feedback about what works and what doesn't, and also to do a lot of back-reading on this forum. I could not have accomplished what I have so far if I had not done all the back reading I've done, especially when I first got here. You know your own body and your symptoms better than anyone, so just getting advice from other people may not help you as much as doing your own homework. If you do your own research you find little nuggets of information here and there that become really crucial to your recovery, but the nuggets address small things you wouldn't think to mention to other people, maybe even your doctor. I hope that makes sense..
 
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garyfritz

Senior Member
Messages
599
Thanks @whodathunkit, that's very helpful!

Adenosylcoblamin (a different type of B12) is different. Your body needs that, too, but it is stored in the mitochondria. If you have a good supply of adB12 it takes several months to become completely deficient in that form of B12.
I haven't gotten any adenosylB12 yet. I picked up most things at the local Whole Foods but I couldn't find any adenosyl / dibencozide, nor any B-complex without folic acid. Time to hit iherb.

I hesitate to say something like "the half-life of mB12 changes over time", because scientifically speaking I don't think the half-life of any substance can change. But your body can process it more efficiently or less efficiently over time,
Right. The half-life of a radioactive element can't change. But the "half-life" of a nutrient in your body can definitely changed based on your body's demand.

I had also worked my way up to commensurate amounts of folate.
I've got some Solgar but I need to figure out how much I need. How do you determine that? What are the "not enough" / "too much" signs?

If I was you I would experiment with different doses of mB12, maybe adding some folate. Recommend to try some adenosylcobalamin as well,
Yesterday I started with the 5mg Jarrow mB12. I think I will plan to do one of those in the morning, and one in the evening, with Readisorb spray in the middle of the night as needed. Hopefully it won't be needed!!!

I can't emphasize strongly enough the need to be able to listen to your body for feedback about what works and what doesn't, and also to do a lot of back-reading on this forum.
It would help if I could find some expected reactions. People talk about "not tolerating" various things but they don't say what that means. I know what my issues are with B12 but I don't know what to look for with folate, adenosylB12, etc. I'll keep looking.

Thanks!!
Gary
 

whodathunkit

Senior Member
Messages
1,160
@garyfritz , it sounds like you really need to read the two stickies at the top of this forum: "B12: The Hidden Story" and "Active B12 protocol basics". They'll give you a lot of good background. Read the last few pages of each thread first, as they contain some good info and the most recent recommendations for brands and information on starting the protocol, then go back and read the whole threads. It will take a while, but they are invaluable. You probably should internalize at least some of the information in those threads to progress. I've found them crucial, as I believe others have, as well.

"Not tolerating" is a relative term in that it means different things to different people. What I can tolerate may be intolerable to you, and vice versa. A reaction can be anything from mild insomnia and minor anxiety to full-blown panic attack, life-threatening heart palpitations, etc.

This is what I mean by saying you should get used to listening to your body. As you begin to listen, it will tell you things. For example, my body told me through a "wired out" feeling and mild anxiety that I was taking too much LCF when I started this protocol. So I experimented with dosages and best time of day to take LCF and hit upon what worked for a while (250mg in the a.m.). When I was satisfied I was stable on that dose, I started experimenting again to see if I could go higher. I could, but only up to a full capsule (500mg). I got stable on that and then experimented again. Now I'm up to 1000mg LCF in the a.m., but my reactions and experience plus many anecdotes from others (that I gleaned by researching the forum) tells me not to take LCF later in the day. It's too stimulating.

And that's how it goes for pretty much all of these supps. Research, trial and error.

P.S. Just remembered this...if you decide to ever try TMG, definitely do background on it thoroughly first. It's betaine, essentially a digestive supplement, and it could have implications for H.Pylori. I can't really take TMG because it puts my G.I. tract into overdrive. It may or may not be contraindicated in H.Pylori. Just sayin' because you mentioned TMG in an earlier post.