Hi Opus88
Many of us on here have bad reactions to methylb12 and have to take hydroxy but need to start at a low dose and build up to avoid mood swings. I would get an oral hydroxy and build up. Freddd and some others had different problems with methylb12 and Freddd even says he had a quick improvement but he won't get his genes tested by 23and me so that we can work out why he reacted as he did.
@
Freddd I would gladly donate $6 to the
Get The Damn Test Done Freddd Fund
Hi Brenda.
I've talked to lots and lots of people in all this. Once again, this summer I worked with the half a dozen CFS.FMS suffering folk where I was staying. Fortunately every one of them had a "good" experience even though two of them told me they were going to have a "bad" experience" on MeCbl. Basically there was a semantic misunderstanding that lead to all sorts of misery. I have seen that in numbers beyond easy counting. So please, in describe in detail what you mean my "bad".
In person I have NEVER seen any of these mysterious problems. What I have seen is lots of donut hole folate insufficiency, low potassium, too much B1, too much b2, too much b3, glutathione, NAC and a bunch of other things. I have also seen plenty of limbic system damage with certain characteristic and responses. to specific nutrients. But you now, after working though as many a dozen different things in the way, most do come around to have a healing response. The problem is recognizing it. You mention mood swings as need to avoid. I had intense mood swings during several 9 month healing periods. The deficiencies cause nerve damage, mood disorders, personality disorders and all sorts of effects of every description. As one heals the symptoms often run through backwards or a mishmash of what was already experienced over years and decades getting worse. I have experienced a whole series of symptoms., neurological and neuropsychological, run through backwards with some precision, but 50 times faster than while getting worse. I mapped these responses out in me and others present personally while recovering. I've mapped the responses of people remotely.
Now CFS/FMS (and presumably ME) have a very clear characteristic together, they both have low cerebral spinal fluid levels of cobalamin. People who have low CNS levels of cobalamin have neuropsychological, mood and personality disorders of various sorts, often many. They also have pain disorders originating in the brain. When MeCbl and AdoCbl get into the brain (in a very restricted fashion in CFS/FMS) they cause a noticeable response and healing takes months. and months. A new round of healing each time you hit a bingo for a substance that aids the process. Much of the healing experience is unpleasant.
Simply calling some "bad" doesn't mean it is damaging and doesn't exclude it from being favorable to healing. Neurological healing can be desperately painful or unpleasant in any number of ways.
So the answers I need are the following. In fact there are answers every one of us likely could benefit from to be found from these questions.
- What SNPs point put why it is difficult for US (with CFS/FMS) to gain and retain b12s in the cerebral spinal fluid which contributes to damage ion the first place and difficult healing?
- What SNPs point out lack of ability to convert vegetable folates to l--methylfolate
- What SNPs point out lack of ability to convert folinic acid to l--methylfolate
- What SNPs point out lack of ability to convert folic acid to l--methylfolate
- What SNPs point put why most of us who have tested that far find that LCF works tremendously better than ALCAR, or vice versa.
- What SNPs point put why HyCbl is 100 to 10,000 times more potent for some people than others making it the operational equivalent to a combination of AdoCbl and MeCbl. (without that HyCbl only slows down dying as it leaves almost all the b12 deficiency symptoms untouched and makes many worse)
Something that can be done by people right here at this forum to break important new ground. There are probably some hundreds of people here that have their gene tests and also have some degree of paradoxical folate deficiency. So there are at least 3 recognizable levels of paradoxical folate deficiency/insufficiency (discernible by symptoms) as well as a fully functioning folate metabolism that is happy with all forms of folate. So when all those people with the SNPs can correlate them with their symptoms (correlation is not causality, but they can sure give hints sometimes) and need for folates, if the SNPs are useful they ought to be able to do as well as symptoms in pointing out who will have what kinds of reactions to various folates.
I am willing to work quite hard matching up my symptoms to those of others in the same combinations, i.e. partial methylation block, methyltrap and partial ATP block, each for of body and CNS. These also line up to specific nutrient combinations needed to heal them Then when people take the MeCbl, AdoCbl, l-methylfolate and LCF, the responses are highly predictable. However while the predictable responses to the items deficient occur, what is not predictable is how the people will interpret them, to run from them or to work out the bugs, for them to be "bad side effects" or "great flags of healing". In the majority of cases I have observed in person, those who have the expected responses generally can bring things into balance but it can take a lot of work. As only about half of the pathways are mapped out, the other half are still marked "edge of the world. here there be dragons". In the 50 years of inactive B12 and folic acid research, all those who had healing actually start up with vigor were kicked out of the studies (dangerous side effects, low potassium generally) as the studies did not have provision for adding potassium as needed. It's a shame to see that so little has been learned about how to heal with MeCbl, AdoCbl and L-methylfolate in the last 60 years.
We collectively here amounted to the 5% that fell outside the 95% medicine (at best) being practiced. Even when expanded to maximum detail, there are plenty of people here who don't respond as predicted where there are still plenty of not understood holes in the models used.
So far, I have mapped, with lots of help here, symptoms to nutrients, responses to nutrients, responses to symptoms. The only thing not done is mapping SNPs to symptoms, SNPs to actual results (not hypothetical results) with various nutrients and SNPs to healing. So far SNPs only appear to be tied to hypothetical nutrients. Let's see the mapping to some bodies full range of symptoms, then take the mapped nutrients, if different from the hypothetical nutrients and see if the predicted responses happen. I've spent more than 25,000 hours working out a reasonably predictable system. The problem is that most of the researchers of SNPs have grown up on b12 and folate mythology and many of them know so distressingly little about how b12 actually works in practice that they say lots of things that are inherently nonsensical because those things were assumed 50 years ago and NEVER validated. Modern studies on CyCbl and folic acid complain that they are "disappointing" and a "conundrum" because they don't work the way they are "supposed to". There is no predictable system.
We have enough people here with the SNPs and symptoms. Let's see if collections of SNPs can be connected with paradoxical folate deficiencies in several varieties, anything that miraculously gives HyCbl the power to replace AdoCbl and MeCbl 100% (of course there would have to be people actually healing to demonstrate that). Where do the demonstrable carnitine differences come in. What SNPs are associated with HyCbl not being dependent upon the deadlock quartet for it's conversion to a usable form, if any. Any one of these would be useful. And of course, what is the SNPs that allow the differentiation between the "Parkinson's" direction (brain problems from low AdoCbl/LFC) versus the "MS" direction (low MeCbl/mfolate brain/cord problems) .
Or pick any set of symptoms and SNPs that reliably predict the symptoms and nutrient responses that are already matched up. I just want to see that there is anything at all to this. All sorts of intellectual murmurings in my brain suggest there ought to be something there however so far I "I don't get no satisfaction" and maybe that's just because "You can't always get what you want".
If the SNPs at the current level of knowledge are any use it would be good to know what it is. They would have to map to and come out with some of the answers we already know in some of these situations. So far it looks like an occasional hit and a lot of strikeouts. The degree of incorrect answers so far gotten might be far more indicative of something wrong with the hypothesis or how it is applied than as a guide to achieving healing.
So let's assume I get my 23andme test and according to it, everything I have done to heal is "wrong" according it's results. Is this a genuine intellectual risk you are willingly taking in order to genuinely understand better, a risk that you will see that the current analysis is completely wrong and useless. You see I have no intellectual risk here. My healing is not at risk. If 23andme can be interpreted to get me the last 10% of the way and heal these damages, I can certainly accept that without any fundamental changes to my system, just a few additions However, if 23andme results says I'm doing it all wrong, then it's interpretation is all wrong and it is counter productive and perhaps even has incorrect and damaging advice about HyCbl and folates. There is NOTHING 23andme can come up with that can throw out my own and others healing. If it comes up and gives me the Deadlock Quartet in the relative quantities that are effective for me as the suggested therapies, or something that can get to that, I will be amazed. And as far as I know, the very first one. It's nice knowing the answers in advance. That gives me a top rate BS detector. And so far, applied in retrospect, discussed 3rd person, I have not found any practitioners retrospectively in the last 10 years either who would have gotten it right and healed me. They also all have reasons why what I did shouldn't have worked according to their hypotheses.
My healing was because I solved the problem, my way, all the way from detection via symptoms to cure. I developed a system. First I did the systems analysis; then I looked for what filled in the black boxes. I hit something like 10 home runs in a row before trying glutathione. Glutathione was the only item that only scored 2 of 3 of my usual criteria for a trial. Everything else scored 3 of 3. Then I got well. I refined the working hypothesis. Each item that was correct was one more confirmation that I was on the right pathway. Even the glutathione that was a personal disaster for me healing wise, helped solve the problem. I tried the glutathione because of so many people's theories and high hopes. I had hoped that at least one of them might be right. I needed an unexpected "home run" to heal all this persistent neurological damage. Nine other people were equally convinced and willing to put their bodies on the line. This really is a life and death matter. When I saw the damage being done I let everybody else know and they were seeing it too, just not yet recognizing it. Ethics required us to cease immediately and set about reversing the damage as quickly as possible. As we had a hypothesis as to why it happened we also had a hypothesis to reverse it but that took several months to develop. And it mostly worked. It probably would have worked better had we known how to reverse it immediately. It's just that 100% of the other people using glutathione got it all wrong. We are not just playing for intellectual points in the air. I've seen people get scared to death over a 1:100,000 chance of a serious vaccine side effect. Here we have something with a perhaps 20% chance of brain damage and people go merrily on their way advising other people to take it. I guess I just don't tell the stories with enough scare factor.
So Brenda, are you making a real offer of potential intellectual change including that the interpretation used of 23andme could be in essence mostly wrong compared to real world results?. If the understanding of those SNPs is based on the 50 years of study of HyCbl and folic acid it can't help but be wrong and counterproductive. If I can be shown even one set of SNPs in one person that predicts HyCbl to be able to yield the full range of healing expected from AdoCbl and MeCbl by them demonstrating SUCH I will be surprised and will agree that it is not impossible. If I see a whole lot of it, then it isn't improbable. If the suggested items from the test end up correcting partial methylation block, methyltrap and partial ATP, in effect, correcting the underlying problems yielding the symptoms of ME/FMS/CFS, then I would agree that the interpretations are correct enough. So far no joy on that.
What is it that you would you expect a 23andme test to show for me and what would you expect it mean? Surely you have a hypothesis to put at risk in all this. What is your hypothesis about what the test "should show" for it to verify my demonstrably effective therapy? And if it says something else what does that mean? What changes in belief system or hypothesis or interpretation are needed to include it or explain it away. Convince me that there is some payoff, a change in understanding at risk, even simply a lunch bet at stake.
he won't get his genes tested by 23and me so that we can work out why he reacted as he did.
If there is a working system here, knowing in more detail about me and what nutrients worked for which symptoms and how and cofactors than you have ever known about anybody else, it's all there in what I have written.
so that we can work out why he reacted as he did
So there is right in front our faces.
Work out what my SNP profile HAS TO LOOK LIKE, at least in relevant sections, because I did react as I did. Instead of predicting which item should be used, go from what item is successful and what predicts it to be so in the SNPs. Then we will look at my SNPs.
If one can't follow the system back and forth, up and down, to and fro, in both directions, there isn't a system. For the folate related genes, mine ought to be either very common or very rare. So come up with a prediction of at least what ought to be present and what ought not be present in various areas. What SNPs predict that AdoCbl/MeCbl are 100 to 10,000 times more effective than HyCbl ("radically" more effective as Wheatly put it).