Hi tealady,
After so much I have read here, I believe many of us have continuing problems with this particular area. There seems to be a particular connection between the CFS sufferers and the amine oxidases, MAO-A and DAO. I am a +/+ for MAO-A, and I am looking into the DAO SNP's.
Laurie, are you saying here the rash came on with hydroxy B12 ? ie B12 seems to be causing a histamine reaction?
Kerrilyn seems to be saying it was B12 (happened firtst when took a tad more-both Adb12 and Methylb12 togethr, which may have raised thje histamine level suffucently to get a histamine reaction?
After doing some extensive reading here, I don't think it is the B12 that 'causes' our problems, but it surely does coincide with them. Taking B12 would supply the methylation cycle and cause it turn, very simply put. The problem with histamine as I understaqnd it, is that once that happens, then the next limiting factor would become the folate cycle and whatever mutations we have there. Of which I do.
As I have learned, folate is at the center of high histamine. Not in its production, but its breakdown and in two ways. I quote Rich VanK in saying....
High histamine occurs in people who are getting folic acid as their main source of folate, but are not able to convert it readily to the active, chemically reduced forms of folate. This can be due to an inherited slow version of the DHFR (dihydrofolate reductase), which normally carries out this reduction. The activivty of this particular enzyme varies by a factor of five, or 500%.
Folate normally impacts the degredation of histamine levels in two ways. One is that the normal breakdown of histidine in which histamine is derived from, requires THF (tetrahydrofolate), a reduced form of folic acid in which is referred to as a folate. Deficiency in this, this being THF is what can be seen on UA's as an elevated FIGLU (formiminoglutamate).
The second way folate not folic acid impacts histamine levels is that the intracellualar breakdown of histamine is carried out by the MTR (methyltransferase) reaction, and this depends on having adequate methylation capacity, which depends on Vitamin B12 and methylfolate, one of the reduced forms of folic acid.
So I myself believe due to all the mutations that was found in my folic acid cycle, that not enough caused the problem versus introducing them. It also correlates with what Freddd has mentioned, in that a reaction is a positive sign you are deficient. The problem comes with the problems associated with exactly that. It would seem the symptoms are so severe when introducing these to some, that it has to be done in such minute small amounts in order to counter the severity of the introduction.
I believe part of that is the result of jump starting those two cycles. But I also believe some of the excititory symptoms in which make it so unbearable to many are also related to the effects of finally supplying the folate cycle and it starting to work. And I believe it is here, that the connection to the amine oxidases, and MAO-A are taking place. And its the MAO-A and its mutations in which result in a decreased level of the breakdown of neurotransmitters in which seem to coincide with the severity of the symptoms associated with the introduction of Vitamin B 12 and methylfolate.
After looking at the mutations I have, I shouldn't have a huge problem in converting hydrox B12, although I would have some. Not enough to not use it. So I believe the introduction of Hydroxy and keep in mind I was using reduced forms of B12 and methylfolate along with it, ...so I believe thats exactly what happened with the histamine and mast cell reactions in my particular case. Perhaps this may also apply to others, or atleast should be considered. But let me make it clear, I am still using the reduced forms of B12, the adenosyl and methyl B12, and am adding an additional small amount of hydroxy. I am adding this to my original post here, to make sure I am more clear.
Some other things I have heard concerning this particular issue, is low cortisol of which we all also seem to have in common. Cortisol counters histamine.
I have also run across conversations mentioning the methyl trap and over driving the methylation system concerning histamine.
I have heard directly from Rich VanK, as perhaps a copper deficiency might exist if there were problems with DAO. I would like to know more about this particular aspect, and its relation if any, to MAO-A.
[histamine-N-methyltransferase is another term used for Rich VanK above explanation I quoted.]
I don't know if the intestines can be equated to the chicken versus the egg, but what I am finding in myself, is that everything that my intestines should have or should be doing, aren't.
B12 causes intense tingling (perhaps faintly over whole body) but intensely in soles of feet and palms of hands with burning sensation-sometimes worryingly intense
When I first started (around 2002? ) I had extreme reactions with plams of hands anmd soles of feet turning a reddish/puplish colour with the tingling, they still go a reddish shade but not as in intense..and nor is the tingling. My Mum has a similar plams of hands/soles of feet reaction.
I had that too when I started the methyl and adenosyl B12's. That to me just indicated neurological damage, and the nerves starting to come back on line. I know Freddd has talked about this extensively. Perhaps he will chime in.
Aspirin seems to help cut the reaction (Mum is on daily mini aspirin and didnt seem to get the reaction this time)
Does this mean its histamine related. If aspirin does help how does that work?
Possibly VitC may help-unsure of that, or VitC with aspirin? I'm trying to recall what else I've tried...sorry memory is poor...
Where as my blood was abnormally thick prior to starting a methylation program last year, it is no longer. I haven't taken aspirin in quite a long time. This would be a question for either Rich or Freddd to answer as I am not comfortable making an observation in this particular area.
I also had an extreme flush from trying once some niacin (one tablet only of 100mg I think) back in 2003 to 2005 period(I was trialling B12 then too)...I tried again at 50mg for a few days and was OK? I forget what happened after this, but I did discontinue for some reason...? hmmm , no recall of this at all, only the negative reaction...
Is this histamine related too?
Niacin works in tandem with the folate cycle, so perhaps taking it without adequate levels or reduced folic acid accounts for some of the reaction you had as well as problems with breakdown of the histamine release discussed above.
I just recently had a prolonged, toxic type of reaction to niacin, of which I have been taking for quite sometime and never had that kind of reaction before. So I don't believe a prolonged, toxic type of reaction to niacin would be confined to just the reduced forms of folate, there has to be another limiting factor, and again, Rich and Freddd would know those much better. Perhaps they will address this too?
maybe we need to take this histamine reducing tablets before the B12?
I will edit this post to put in link to my other post here
and the next few in thread (2086-2090)
There is a product called Daosin, that can be acquired at iherb among other places. What I didn't like, was that it only comes in packages of 7 or 14 I believe.
I also think maybe lecithin helps and perhaps DHEA in reducing the anxiety and tingling?
http://forums.phoenixrising.me/showt...l=1#post186349
The lecithin would be helpful in the nerve damage and healing incited by the B12, the phosphitdyl's, nerve sheath healing. DHEA a hormone addressing neurotransmitters, adrenals, etc. I am not a fan of either for varied reasons.
Most lecithin on the market is derived from GMO soy. I don't do GMO. And soy gives me one hell of a headache.
DHEA, I would rather have physician involvement in instead of blind trial and error. Thats just a me thing. I have taken it, but only under supervision and advice counsel.
Here's to getting to the bottom of this. I know this subject has been beaten to death, but I think thats because so many of us have these severe reactions without really a resolution.
Laurie