B-12 - The Hidden Story

[tealady]

Thanks Rich,
I edited my post above slightly to make it a bit clearer for anyone reading. Thanks for perservering to read and help.

I was reading that B12 and folate both RAISE histamine, so wondered if I had a histamine reaction , and, if so , is that why I have had problems taking B12 and folate supps.

The headache only came on after taking the 100mcg Solgar Metafolin so I know it caused it, but I'm assuming the levels of histamine were already primed highish from the meal, allowing a small dose of folate to push over the threshold.(although its a blurred threshold with a gradual comeon which could be interpretd as a chronic fatigue style tiredness and head not quite right especially around eyes?)
I was trying to suggest that maybe IF the Metafolin caused the headache by raising histamine levels over a threshold, then maybe for me and maybe for others who are not able to tolerate B12 or folate, maybe we should be looking at taking something to reduce histamine first. Maybe this is why some of us are having negative reactions to B12, and if so, would taking Daomin or similar beforehand allow us to take B12 without the negative reaction?

I believe I need the B12 in the long run, I have ben trying to take it since 2002, and I dont really buy into the detox line, thinking its more causing shortages or taking over thresholds(ok mercury and some other toxins moving sounds valid)

Does anyone know if a histamine style reaction also cause the increase tingling and reddish/puplish palms of hands and soles of feet? (I didn't get that this time(I dont get this reactio from folate), but have previously when taking B12 as well as wiped and headachy). This is my typical B12 reaction.(less from a methylcobalmin sublingual, more from a hydroxocobalamin injection which I believe delivers more B12 to me)

Just wondering if if ordering that histamine lowering product from iherb or Daomin or the other product in London and taking before the B12 would help? and if it would help others who are having problems taking B12 as well? Anyone else think this may be why they don't tolerate B12 too

also if I need to learn about histamine, which I find very confusing, where is a good place?

like does high histamine cause these bloodshot eyes I've been getting sometimes..can't figure ourt why I get those..

 

[h4house]

Hi Tealady,

Interested in your comments about Histamine levels. By Histamine lowering products from iHerb, do you mean Histame? This is the US branding for Daosin, developed by n Austrian company. You get a bit more Diamine Oxidase in the Histame capsules, so perhaps better value..

I'd like to know the name of the product in London you refer to? Supposedly, there is a product called Histrelief which I thought is still in development. The person developing it also offers various tests, (I won't mention any names). They are expensive and considered of dubious value by many doctors. In fact, the person in question has been surrounded by a fair amount of controversy. From an informal chat with someone who took part in the Histrelief trials, it is basically a supplement - not a medicine.

Just bear this in mind if you're think of going down this route.

 

[tealady]

Hi Tealady,

Interested in your comments about Histamine levels. By Histamine lowering products from iHerb, do you mean Histame? This is the US branding for Daosin, developed by n Austrian company. You get a bit more Diamine Oxidase in the Histame capsules, so perhaps better value..

I'd like to know the name of the product in London you refer to? Supposedly, there is a product called Histrelief which I thought is still in development. The person developing it also offers various tests, (I won't mention any names). They are expensive and considered of dubious value by many doctors. In fact, the person in question has been surrounded by a fair amount of controversy. From an informal chat with someone who took part in the Histrelief trials, it is basically a supplement - not a medicine.

Just bear this in mind if you're think of going down this route.

Hi H4house,
I know nothing about any of this...I just read on here a post yesterday about the Histrelief(sorry I couldnt find that post agin and forgot the name of the product) ..by someone who said they were a lot better after being on a trial of it, but mentioned it not being generally available, and a thread that mentioned looling on iherb, which I did and came up with Histamine you mentioned. I would like to know if anyone else has tried any of this, it does seem to fit with me and possibly a no of females on here? I'm wondering if some of us have a similar problem here..and why?
I was just posting on another thread here where 2 others were talking about histamine (they got hives and tingling?) Just wondering . I have'n't ordered as yet, but it does seem to fit?
here's the post I just wrote
http://forums.phoenixrising.me/show...tion-Protocols&p=186756&viewfull=1#post186756

 

[Rockt]

I believe adding in the lecithin (soy lecithin non GMO granules from supermarket in Oz) seem to be helping, as I noted an improvement...almost vanished tingling and more energy and clearer brainfog..not perfect though. Anxiety styill there but lessened. I cant say for sure its the lecithin but It maybe. I also tried it a few years ago, and it seemed to help then too.,.although again I did multiple things.

How much lecithin do you take?

 

[tealady]

How much lecithin do you take?

Just one spoonful of lecithin (amt can vary from teaspoon to dessertspoon) on my brekkie of rolled oats(usually with linseeds,yoghurt,couple of walnuts,macadamia nuts, occasionally a brazil nut or two and some cashews etc),small amt of fruit or some sultanas, currants etc.(prefer pawpaw,strawberries etc but cant always get!) and a third to half a banana sometimes as well.
I purchasethe lecithin in a supermarket- its non GMO soy based. i dont like GMO and dont much like soy either, but the lecithin has not so far affected me that I have noticed, so I doubt the soy-derived is causing the problems that soy itself may. I did check this out years ago and wqas assured it should not. If I could buy non soy I would though , but I think soy-derived does not contain the negatives of say itself

 

[Freddd]

Thanks Freddd, I'll let you know how it goes.

Wanted to ask a couple of other things: 1. AOR Advanced B-Complex seems to make me very tired, like how a normal person feels when they are very tired, (not the "tired, but wired feeling of CFS). I think it actually helps with sleep too, but I don't like the tiredness - trying to be LESS tired.

Also, Source Naturals AB12 seems to give me a tired feeling, but not quite like the AOR B-Complex. And here's something weird - I've had foamy urine for a year or so, (almost always); had it tested and it came back normal; I walked a bit further on Sunday, (45-50 minutes, instead of the 25-30 minutes I've been working up to - long story, but I didn't intentiaonally set out to increase the time this rapidly), and I seem to have crashed. So I tried taking extra Ab12, (Source Naturals), thinging it might "recharge" the mitochondria. I took 2 in the morning yesterday and 2 in the afternoon. It didn't help, but strangely, my urine was far less foamy. Didn't take any today and the foamy urine is back.

Love to hear your thoughts on this.

Hi Rockt,

I have had foamy urine on and off for decades. The best connection I can come up with is that the foamy urine occurs after the paradoxical folate deficiency becomes established, after open lesions such as cheilitis and acne type lesions have appeared followed by IBS. The foamy urine goes away after the open lesions have started to heal and the IBS has faded away.

 

[Red04]

Update

My wife seems to be back up to full energy. We replaced the folic acid supplements as recommended by freddd. Also, upped the potassium and methylfolate for 1 week before going back to the normal dose.

The depression went away first, then the pain, then lastly the fatigue. This all happened within a week. We are on day 3 of the "Insanity" workout videos and she is doing good. Here's hoping to no more crashes.

I did go back and look at her last crash (in January) and I tried to replace all the A,D,E,C, calium, mag, etc... with a multivitamin. That multi cotained folic acid....maybe that is some more evidence against folic acid.

Also, my wife has just been diagnosed with some small holes in her retna, and they are going to do some laser work on her tomorrow. Her vision is terrible. Is this a common symptom with the ME/CFS community?

 

[Freddd]

My wife seems to be back up to full energy. We replaced the folic acid supplements as recommended by freddd. Also, upped the potassium and methylfolate for 1 week before going back to the normal dose.

The depression went away first, then the pain, then lastly the fatigue. This all happened within a week. We are on day 3 of the "Insanity" workout videos and she is doing good. Here's hoping to no more crashes.

I did go back and look at her last crash (in January) and I tried to replace all the A,D,E,C, calium, mag, etc... with a multivitamin. That multi cotained folic acid....maybe that is some more evidence against folic acid.

Also, my wife has just been diagnosed with some small holes in her retna, and they are going to do some laser work on her tomorrow. Her vision is terrible. Is this a common symptom with the ME/CFS community?

Hi Red04,

blurring of vision - can be sudden onset and sudden return
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
optic neuritis
optic neuropathy
centrocecal scotomata
intolerance to bright light

Also, my wife has just been diagnosed with some small holes in her retna, and they are going to do some laser work on her tomorrow. Her vision is terrible. Is this a common symptom with the ME/CFS community?

Clearly there are a lot of visual problems with b12 deficiency as you can see from the symptoms list at the beginnig of this thread. Age related macular degeneration is also a b12 deficiency characteristic that will be on the next version of the list.

So it is looking like your wife also has paradoxical folate deficiency. I have this from folic acid, folinic acid and vegetable food source folate. I happen to have what I think is a very nice organic garden. When I started eating a lot of greens a couple of months ago the folate deficiency symptoms started popping up again. I have to be careful how much how often I eat the greens and timing with respect to metafolin. She needs to learn to recognize the onset symptoms quickly so it doesn't go all the way to a crash before she realizes it. Remember, lots of foods also have folic acid added so the problem isn't going to go away. I'm glad to hear that she is doing better again.

Another person has written me that his retinal problems are improving with enough mb12 and Metafolin. Neurological healing takes sustained action for healing. Setbacks hit neurological damage harder and faster.

 

[Sasha]

I'm very cautiously starting the protocol and have begun by starting in with the basic vitamins and minerals before adding the B vitamins. I developed slight diarrhoea the day after starting Vitamin C at 2g and the day I started Metafolin so I'm assuming Vitamin C is the culprit and am dropping down to 1g today.

During my first illness with ME (I had a long spell of remission and near-normal function) I titrated up to 45g of Vitamin C a day, a huge amount. I'm wondering how common it is for people with ME to be able to tolerate such a high dose, what that meant, and whether it is surprising that I'm apparently having problems with a low dose now. Any views?

 

[JPV]

I'm very cautiously starting the protocol and have begun by starting in with the basic vitamins and minerals before adding the B vitamins. I developed slight diarrhoea the day after starting Vitamin C at 2g and the day I started Metafolin so I'm assuming Vitamin C is the culprit and am dropping down to 1g today.

The trick with supplements like C and Magnesium, which can cause loose stools, is to spread the doses out to 4 or more times a day.

 

[Sasha]

The trick with supplements like C and Magnesium, which can cause loose stools, is to spread the doses out to 4 or more times a day.

Thanks, JPV - I started out with slow-release Vit C, 1g in the morning and 1g at night and thought the "slow release" bit would be sufficient to space things out a bit but maybe not! I hadn't realised that Mg can have a similar effect, so that's worth knowing (though I had been on that for a few days with no problems so I think it must be the Vit C).

 

[JPV]

Thanks, JPV - I started out with slow-release Vit C, 1g in the morning and 1g at night and thought the "slow release" bit would be sufficient to space things out a bit but maybe not! I hadn't realised that Mg can have a similar effect, so that's worth knowing (though I had been on that for a few days with no problems so I think it must be the Vit C).

The way I've heard to gauge how much Magnesium a person needs was to keep upping the dose (at 4 separate times throughout the day) until it gives you loose stools and then back off a bit. I imagine that C works the same way. If it's giving you loose stools then I believe you are either not spreading doses out enough or you're taking more than your body requires.

 

[Freddd]

The way I've heard to gauge how much Magnesium a person needs was to keep upping the dose (at 4 separate times throughout the day) until it gives you loose stools and then back off a bit. I imagine that C works the same way. If it's giving you loose stools then I believe you are either not spreading doses out enough or you're taking more than your body requires.

Hi PPV,

Viamin C does work in a similar way. However, after holding a week at the toleration level, it can generally be increased again. I took 16 grams daily for decades. Now, with the mb12 etc I only need 6 grams a day for good health.

 

[aprilk1869]

So it is looking like your wife also has paradoxical folate deficiency. I have this from folic acid, folinic acid and vegetable food source folate. I happen to have what I think is a very nice organic garden. When I started eating a lot of greens a couple of months ago the folate deficiency symptoms started popping up again. I have to be careful how much how often I eat the greens and timing with respect to metafolin.

I have been reading how the tannin in tea chelates non heme iron (iron found in plants) but not hem iron (iron found in meat) so much.

Tannin in tea also chelates folate.

So I was just thinking, because there seems to be a big difference between folate found in plants compared to meat/Metafolin, perhaps drinking tea with folate-rich vegetables could be a consideration?

 

[L'engle]

I have been reading how the tannin in tea chelates non heme iron (iron found in plants) but not hem iron (iron found in meat) so much.

Tannin in tea also chelates folate.

I knew that about Iron but not about folate. Perhaps that's why I become drained from drinking tea, caffeinated or not, black or green. I miss drinking tea!

 

[jeffrez]

So I've been taking 7.5-10mg jarrow mb12, 5,000mg ab12, 800mcg folapro, 300mg K for about a month now - aside from initial minor boost from the mb12 I can't say I've noticed any effects from it. No noticeable improvements at least. Any comments/advice Fred?

 

[Sasha]

Getting worse just on the basic vits and minerals - help!

I started the basic non-B/folate vits & minerals 11 days ago, hoping to establish a symptom-free baseline of stuff at the right doses before adding in the Bs & folate. I started out with Vits A, D, E, Zinc, Potassium (200mg), Ca/Mg (500/250mg), and Omega 3. No symptoms. Then on Day 3 I added 2g of Vit C and on Day 4, folate, and developed slight diarrhoea a couple of hours after taking the folate.

I reduced Vit C to 1g and Ca/Mg to zero since they're the primed diarrhoea suspects and I'm now back to normal and about to start titrating them back up but since Day 6 (possibly earlier) I've had markedly less stamina even than usual and am having to spend a lot more of the day lying down. I think its getting worse and now I'm feeling slightly shaky (just popped an extra Potassium).

Apart from the folate, I am still not yet taking any of the things (folate & B-vits) that seem to be the crucial things to start up the B12 process and that can make people feel worse initally but I think I read on this thread that just taking the basic vits can provide enough to unblock a few related processes and get things going.

Is this likely, given what I'm taken? Do I hang tough or increase something (what?) or decrease something (what?)? Any tips on strategy would be greatly appreciated!

ETA: I've also noticed, I think since starting these basic vits/minerals, that my muscles (arms &hands) are a bit sore, which is not normal for me.

 

[aprilk1869]

I came across this info about a new test for detecting B12 deficiency.

B12 breath test may ease deficiency diagnosis

A new breath test for the diagnosis of vitamin B12 deficiency may allow for a cheaper, faster, and more accurate diagnosis, according to new research.

Researchers from the University of Florida and Metabolic Solutions Inc, USA, claim that the newly developed tool could help to avoid potentially fatal deficiencies in vitamin B12.

The study, published in the Journal of Breath Research, the researcher team reported the development of a simple, non-invasive, low-cost breath test which can more accurately measure vitamin B12 status.

Although this test is inexpensive and readily available, many publications suggest that serum B12 levels do not reflect vitamin deficiency and frequently show false positives and negative results, said the authors, led by Dr. David Wagner of Metabolic Solutions.

In light of the shortcomings of these vitamin B12 deficiency screening procedures, we developed a simple, noninvasive, and low-cost diagnostic breath test to detect B12 functional deficiency, they added.

Read the rest of the article here: http://www.nutraingredients.com/Research/B12-breath-test-may-ease-deficiency-diagnosis

 

[richvank]

Hi, aprilk.

Thanks for posting this article. This is an interesting way to evaluate B12 status. It basically evaluates the methylmalonate-CoA mutase pathway in the liver. In that way, it is a measure of the availability of adenosyl B12 in the liver. It has the advantage of being able to detect functional as well as absolute B12 deficiencies, as does the urine MMA test, and it therefore superior to the conventional serum B12 test. However, it requires an 8-hour fast and the use of isotope-labeled (a stable, nonradioactive isotope) sodium propionate. According to the paper, it is more specific to the liver than is a blood test for MMA. They did not compare to a urine MMA measurement. I'm not sure that this method offers a significant advantage over the urine MMA test. Neither test evaluates the status of methyl B12 and the methylation cycle. The urine MMA test combined with the urine Figlu test, both present in some of the urine organic acids panels, does a pretty good job of indicating a partial block in methionine synthase and the Health Diagnostics methylation pathways panel is more specific than this combination.

Best regards,

Rich

 

[aprilk1869]

I started the basic non-B/folate vits & minerals 11 days ago, hoping to establish a symptom-free baseline of stuff at the right doses before adding in the Bs & folate. I started out with Vits A, D, E, Zinc, Potassium (200mg), Ca/Mg (500/250mg), and Omega 3. No symptoms. Then on Day 3 I added 2g of Vit C and on Day 4, folate, and developed slight diarrhoea a couple of hours after taking the folate.

I reduced Vit C to 1g and Ca/Mg to zero since they're the primed diarrhoea suspects and I'm now back to normal and about to start titrating them back up but since Day 6 (possibly earlier) I've had markedly less stamina even than usual and am having to spend a lot more of the day lying down. I think its getting worse and now I'm feeling slightly shaky (just popped an extra Potassium).

Apart from the folate, I am still not yet taking any of the things (folate & B-vits) that seem to be the crucial things to start up the B12 process and that can make people feel worse initally but I think I read on this thread that just taking the basic vits can provide enough to unblock a few related processes and get things going.

Is this likely, given what I'm taken? Do I hang tough or increase something (what?) or decrease something (what?)? Any tips on strategy would be greatly appreciated!

ETA: I've also noticed, I think since starting these basic vits/minerals, that my muscles (arms &hands) are a bit sore, which is not normal for me.

It seems that Freddd is away so hopefully he'll reply to you soon. However looking at the ratio of Calcium to Magnesium you're taking I wonder if that's the problem. You're taking twice as much calcium and I believe that Rich has said that most people with CFS are deficient in Mg so you don't really need to be supplementing with calcium. Also, many supplements contain added calcium (eg Ester-C).

Taking too much calcium can cause a magnesium dificiency which can result in weakness and muscle pains as you've described. Also, I think magnesium helps with the absorption of potassium which can mean the symptoms of deficiency can be very similar.