Those are the regular forms of the supplement people use. You may have an argument with the nutritional additives industry, but I think we are on the same side here. Also, I did not include folic acid in that discussion, should have clarified that. I was talking about B6 and B12. Some people do seem to react poorly to the p5p activated B6 form, and seem to do better by starting with regular B6 supplements first, then moving to the more active form when they are tolerating that well. That was my experience.
And my experience with B12 includes use of all four forms. You have tested these and found what you have described here. I have also tested the four also and do not get the paradoxical reaction from cyano B12 that you describe. Maybe I convert that synthetic form more easily, without the B vitamins I am not as sick as you have described you are without them, I am not one step away from the wheelchair, so to speak. But I have been bedridden before. What pulled me out of that was not B vitamins at all, but a change to a diet that would starve out some of the bugs, and I believe lowered my H2S production. Perhaps that indirectly took load off the methylation system and B12 demand, that is hard to say.
I guess we all develop our own belief systems around what seems to work for us and those we know. Personally I don't think these commercial vitamins are responsible for this disease, but probably they contribute.
Also, although cyano is not a preferred form of B12, I find it more tolerable than methyl form, but less effective. Therefore I think it is a good experiment, the worst that can happen is someone will not convert it well so it will be useless. My experience with the non-activated vs. activated forms of these vitamins is that the non-activated forms do help, just not as much. And I prefer to let the body decide how much of something it needs, where possible. With activated forms you may be forcing reactions the body is not ready to tolerate. So I think gradually easing into the use of active forms is wise, particularly for people who are self-treating without medical support.
I think you raise a good warning about the possibility of paradoxical reactions, some CFS patients will have those and should know that is what is happening. The idea that every reaction is a 'herx' and they just need to push through can be dangerous. I believe the safest approach to a reaction is to reduce dose, slow down, and if that does not stop the problem, change forms of the substance or stop and try something else.
Hi Kurt,
Actually I think you pick a poor example with herx reactions. While they are generally shortlived, a few hours typically, extreme herx reactions can be dangerous. It isn't a matter of pushing through, the dose of antibiotic was taken a few hours ago or a series for a day and then the reaction hits all at once with the sudden death and cellular disruption of the bacterium, often syphilis or other spirochete, releasing serious toxins, all at once. There typically isn't another choice point. And with bacteria one doesn't want partially resistant ones to survive and reproduce, breeding a resistant infection. Playing games like that with antibiotics is very dangerous personally and societally, say trying to kill just the 20% most susceptible with each dose.
Let me offer some other examples of what I'm trying to say.
Lets consider the more traditional man caused deficiency diseases; rickets, scurvy, beriberi and pellagra.
The second wave of rickets was caused by low potency D forms, D2 in combination with low doses and sunblock. This has caused an explosion of D3 supplements in much higher doses, up to 5000iu instead of 400 iu with the legal maximum being 800 iu. Isn't a little bit of rickets good for a person, say 66% or so?
How about scurvy? Long sea voyages without fresh foods starved people of vitamin C. Ascorbic (anti-scurvy factor) acid works 100% preventing scurvy. The only reason it doesn't work is inadequate dose. When I was young I had spontaneous nosebleeds frequently. There was something wrong with the tissue formation in my nose, and mouth. It was early scurvy symptoms. It is rarely recognized. Frequent spontaneous nosebleeds is a common early sign. After I started 2000mg of C a day I have never had another one since age 23 compared to hundreds from age 2 onwards. Now if there were an almost C that prevented bleeding gums and 1/3 of C deficiency symptoms and sometimes death but not bloody noses and other tissue breakdown would you take that or advocate taking that instead because it's better to not heal all of the things that ascorbic acid does? Isn't dealing with 1/3 of symptoms better than getting rid of all of them?
Now let's consider beriberi and pellagra. These were invented in the USA (Asian countries by feeding sailors only polished rice) in the 1870s with the invention of the roller mill that made perfect white flour that never spoiled because the wheat germ with it's oil and vitamins was 100% removed. Such perfect white flour doesn't support life. No animal or insect can survive on it. Beriberi (B1 deficiency disease) and pellagra (B3 deficiency disease) were as result.
Lets say there was B1 and B1a, B1a only preventing 1/3 of beriberi symptoms though usually but not always preventing death. Would you take B1a instead of B1? Could 2/3 beriberi be so bad? So what if some poor suckers with inferior genes out there would die from it. But hey, it's half the cost and lasts forever, so no spoilage losses. It's better for business and we can't disrupt the businesses that are making millions off of it.
Lets say there was B3 and B3a, B3a only preventing 1/3 of pellagra symptoms though usually but not always preventing death. Would you take B3a instead of B3? Could 2/3 pellagra be so bad? So what if some poor suckers with inferior genes out there would die from it. But hey, it's half the cost and lasts forever, so no spoilage losses. It's better for business and we can't disrupt the businesses that are making millions off of it.
However, we are not faced with that. B1 and B3, D3 and Vitamin C all 100% prevent 100% of the deficiency symptoms associated with lack of these vitamins, in adequate doses. D2 is losing out in the market place because people have gotten wise to how inferior D2 is.
So what percentage of people are you willing to write off?
Cyanocbl works on 1/3 of symptoms for 2/3s of people. All in all it works on 2/9 of person-symptoms. There isn't anything else marketed as a vitamin that is that terrible. It does very little, 1 or 2 or 3 symptoms at out of 300 for 1/3 of people. It won't even save their lives or stop tissue degeneration for these people. The other 2/3 will likely live, but not restored to health. Hydroxycbl is almost as bad. At least it isn't a post detox waste version of disabled b12.
Folic acid is not much different. It doesn't work at all for 20%, works poorly for 30% and may not be entirely adequate for 50%. In a certain unknown percentage of persons it actually worsens the folate deficiency and blocks methylfolate. For some people, percentages entirely unknown folinic acid is just as bad or worse.
I was one of those persons along with my entire family that the standards of care based on cyanocbl and folic acid was willing to write off. So sad that they were condemned to a shortened miserable life of illness. Too bad that there is nothing we can do about it.
Now if there were a stepped approach, such as there is with pain these days, where if symptoms are not reversed within a certain amount of time, the treatment would be upgraded to the next level, that would make sense and wouldn't leave people worsening indefinitely, or were given a choice in the first place and again each month, that would be a different story. There isn't. It isn't done that way. It's if the standard care doesn't work, then you don't have that deficiency so you must have some mystery disease. Because the brainwashing has been so effective most docs don't know that there are any other significantly different choices. Deplin is for tretment of depression, not folate deficiency, Metanx is for treatment of elevated Hcy, not b12/folate/p-5-p deficiencies.
In writing all these things there is something that came to mind that you ought to know. For years I have read about b12 being different in deficiency than any of the other vitamins and it misleads doctors who are not used to thinking in the unique way b12 and the body interact. With folate, I have had demonstration of 4 different things.
- A natural folate deficiency which consisted of ALL the symptoms in a mild way.
- An induced folate deficiency via glutathione in which all the symptoms came on like a ton of bricks over a few days.
- A slow induced onset over a month with folinic acid with all the symptoms coming on together mildly.
- A faster induced onset with folic acid with all the symptoms coming on mildly at first and worsening over some days as more and more become more and more noticeable.
Note that in every case either all the symptoms were either getting better or worse in concert. Only the speed and severity was different. There was no "treading water" with all the symptoms at once. Either all were improving or all were worsening. It's like either folate processing is on or off, strictly binary.
B12 is very different. I have seen the effect with b12 described as "triage" by the body. When active b12 is in short supply, some functions will receive ALL of it. Some symptoms will be supported and improve, ie MCV and various blood measures while many others, such as neurological and epithelial and endothelial will be going down. Many researchers and docs not familiar with the triage effect will assume that since blood measures are improving, the deficiency has been handled and everything will be improving together. That is a fatally flawed assumption. B12 does not work that way. It does not work round robin. Some things are maintained and others are totally abandoned. People can die of b12 deficiency with perfectly normal blood work.
