I SI daily with B12 Cyano, from both a locally made one, and from Germany, but I go "downhill" rapidly with those. Foot cramps, chest pains, weak legs, brain fog, dry mouth, diarrhoea, all come back!
The only thing that seems to really work is Neurobion, which is 100mg B1, 100mg B6, and 1mg B12, in 3ml ampoules.
I am very concerned about overdosing on the B1 and B6 though!
Can I ask the experts opinion on here about the "safe" dosage of B1 and B6?
From my experiences, I could probably manage 1 week with just the Neurobion.
For your info, I have tried supplementing in between with sublingual B12 Methyl, but the dry mouth and cracked lips come back!
In conclusion? How often can I safely take the Neurobion?
Patez.
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patez
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My cyano comes in 1 ml rubber stoppered vials so I inject 1/2 on Monday and the rest on Thursday. 1000 mcg/ml strength. If I take the full amount in one go, I can't last the week. I probably pee most of it away in the first couple of hours.
I'm on 4.8 mg of folic acid daily which I spread out and take 2x 800 mcg three times a day.
My 100mg B1 and 100 mg B6 I takes daily at noon in tablet form.
I also use 2x 5000 mcg methyl at noon and during my evening commute as well as before any meeting where some brain function is needed.
I also take a daily multivitamin and 500 mg of TMG (betain).
This regime has been working well for two years and the peaks and valleys of the roller coaster ride have leveled out.
I also use SPF 100 sunscreen and avoid UV light ( sun, fluorescent, computer monitor) if possible. UV light reacts to the B12 and gives me patches of hives which turn into eczema. UV light exposure also gives me a bout of diarrhea maybe 6 hours later and brain fog 12 hours later.
Do you keep a log book to help sort out the causes ? When I'm trying to sort out a new symptom I keep a Timed log of Food, drink, meds and activities along with when the symptoms appear and a severity score of my own choosing. There is a 3-48 hour delay between cause and the symptoms appearing due to the gut being involved. The log book help with any short term memory loss as well.
I will try and answer your questions and comments in order.
1. I take 400mg folic acid and 750mg Potassium, orally. You say that you take 4.8 mg of folic acid daily? That seems to be a very small amount?
2. I notice that you say that you take 100mg B1 and 100mg B6 in tablet form? It is my B6 intake in the injections that concern me. I would guess, from what I have read on the forum, that B6 taken orally would only absorb a small percentage? But I take it in the Neurobion injection, which means that I would be getting the daily UL (upper limit) of 100mg? The B1 does not concern me. That, much like B12, has no UL.
3. Yeah, the "roller coaster ride"! It is awful! Nice that you have it under control.
4. I do not keep a log. All I do know is that when I take the Neurobion injection I feel great, for a couple of days! If I supplement in between with B12 only, or sublingual, I get the dry mouth and chapped lips, cramps, diarrhoea, weak legs, and generally just feel awful! Maybe something to do with the fact that B12 should be supplemented with the other B vitamins? Unfortunately, B1 and B6 is not available locally on it's own! I am British, but I live and work in Oman BTW.
5. Short term memory loss? Umm! What were we talking about? LOL!
6. You say that you have problems with UV and patches of hives that turn into eczema? I have never heard of, or read, that excess B12 can cause that sort of reaction? Lack of it, yes!
7. I hope that I am not talking out of turn, but it seems to me that you have "cured" one problem, but introduced other problems? Your sensitivity to UV does seem to be alarming? Maybe someone else can pick up on that and give you some guidance?
8. I do appreciate your reply, and that is what "sharing info" on this forum is all about, to give and receive advice and "talk" about our problem.
In summary? You have not actually answered my direct question about "how much B6 is too much"?
All I know is that taking the Neurobion injections work! Taking B12 alone, either by injections or orally, even with folic acid and Potassium supplements, does not work, for me!
My question really should have been "how often can I safely take the Neurobion injections"?
1.) Check your folic acid tablets - are they not 400 mcg (micrograms)? This is equal to 0.4 mg (milligrams).
The RDA for B6 is 100 mg. You are getting this weekly in your blood. I don't know how to compare daily tablets to weekly injections of B6.
I've used my regime in Saudi Arabia and bought the methylcobalamin injections locally-500 mcg in 1 ml injections which works about the same if I inject the 1 ml amploule every 3 days.
Glad the neurobion injections are working for you. Does it come in amploules or rubber stoppered vials?
I think the sunlight reaction is the lesser of two evil when compared to neurological damage. The application of sunscreen takes no effort. Anyway it works for me.
pvanderaa - not aware that 100mg is the RDA for B6 anywhere. Its a lot higher than the recommended upperlimit in EU and UK and in line with the upper daily limit recommended in the US.
patez
this may be of use in looking at the upperlimits that are considered safe for vitamins and mineral supplementations
what is the form of B12 in neurbion - is it also cyanocobalamin.
In general it is only B12 where oral supplementation is significantly different from general absorption because the mechanism for absorbing is so specialised for B12. Whilst general absorption problems would obviously affect absorption of other vitamins and minerals the drop isn't going to be as dramatic as that relating to a B12 absorption problem (affecting the ileum).
I have stopped the daily SI of B12. I will follow the dosage guidelines in the Neurobion leaflet, which states a maintaining dose of 1 ampoule every 2-3 days.
I do not like taking those, because they are 3ml injections, and they are 3 X more expensive than B12, but they work!
1. The folic acid tablets are 400 mcg, as you state! Oops! I had not noticed that!
2. I have just had a good read of the leaflet that comes with the B complex Neurobion injections. That made very interesting reading! I quote verbatim. Dosage. 1 injection daily until the acute neurological symptoms subside. Follow up therapy is 2-3 times a week, with no limit. Overdose? Taking more than 1mg of B6 daily for more than 2 months may lead to neurotoxic effects.
4. To answer your question about the ampoules. They come in individual 3ml ampoules. Hard to inject, but worth the extra pain!
3. I think I have actually answered my own question? I can safely take an injection 2-3 times a week, as long as is necessary, without overdosing on B6.
4. Why did I not see that? My "brain fog" was actually stopping me from being able to be so analytical!
5. It very interestingly goes on to state that hypersensitive reactions to B12, such as sweating and tachycardia and skin reactions and urticaria, may occur? That bit may be of interest to you? What is urticaria? Hives!
6. Now then? This has been a very interesting discussion. There was a post on the forum a few years ago who had exactly the same side effects as I have had, from IM injections of B12. That is exactly what has happened with me! The B12 injections only send me backwards! Why does the B complex injections work, when they contain B12? It may be something to do with whatever they put in the B12 only injections?
7. That may be a guidance for you to follow up on? Hypersensitivity to B12 does cause hives! That has been shown with IM, but not orally! Trying to analyse? It seems that B12 injections can cause hypersensitivity in some people.
I hope that our discussion can be positive, for both of us. It was your comment about hives that prompted me to let you know what the leaflet for the Neurobion injections says! Some people are hypersensitive to B12, which causes hives.
I am going to stop my daily B12 injections. I am also not going to take the sublingual. They both cause me adverse side effects!
I actually think I am going to be fine with 2-3 days between the B complex Neurobion. Maybe even less than that? Trial and error eh?
Thank you for your input. It made me look seriously into things. It has made me realise that I may be hypersensitive to whatever they put in "stand alone" B12?
It makes a lot of sense why I feel so bad when I take the B12 only injections!
Thank you so much for your reply. It made me look into what on earth was going on? I was diagnosed with severe B12 deficiency, but I was not offered injections. They only gave me some B complex tablets, which did nothing!
I had to take matters into my own hands!
Your reply has been very useful to me personally. It has made me look into why the B12 only injections make me feel bad?
It is very obvious now that I am hypersensitive to B12 only! You may be also?
As I have stated. from the Neurobion leaflet, adverse side effects of B12 do include hives!
My personal side effects of B12 only? Exactly what the Neurobion leaflet says. Sweating and tachycardia.
Why does the Neurobion work for me? I have no idea! Maybe the B1 and B6 counteract the B12 hypersensitivity?
We all know that they all work in tandem?
Anyway! I hope this information may help you to understand and sort out the problem with the UV and hives that you suffer with.
You have helped me also, in making me understand that I am obviously hypersensitive to B12 alone!
Another thing is that some symptoms, especially the ones right after the injection, counterintuitive. Things like pain, nausea, diarrhea etc.
Here again the logbook helped me sort these out. The diarrhea is one of my marker symptoms. The worse it is, the lower my B12 level was before the injection.
Hunger is another. This I take to be caused by the repair to my vagus nerve.
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