Xara
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Gimme another one, it's fun to amaze myself ;-)Correct
O never mind, back on topic.
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Gimme another one, it's fun to amaze myself ;-)Correct
Maybe you've changed your mind because a month or two you stated very emphatically and loudly that Rich's theories about you were wrong:
http://forums.phoenixrising.me/inde...o-con-arguments-confuse-me.21963/#post-336198
You're the one who said "I have to assume he meant MTHFS." Since I know very little about SNPs, I took your word that he wasn't talking about MTHFR. And yes, I'm trying to learn as much as possible. I've also searched the SNP forums about which SNPs have problems with folic acid and folinic acid so I can figure out how many people here (including myself) need to avoid or limit either folic acid and/or folinic acid (just as Rich was doing last year). I've learned a lot from Rich and I know he's not always right, but he knows more than just about everyone here. I'm sorry hydroxocobalamin didn't work out for some of you here, but that doesn't invalidate everything he said. That's why he revised his protocol last year to give people an option to switch to methylcobalamin (and possibly also raise methylfolate) if hydroxocobalamin didn't work. It's a sad state of affairs that I have to defend Rich especially since he knew more than just about everyone else here and not just about methylation and glutathione depletion. Unless you have time to answer all of my questions, Rich is the first person I'm going to for information. I was unable to find much information in the SNP forums about the subject which is part of the reason why I'm going over Rich's posts. In another of Rich's posts he mentions MTHFR C677T specifically in regards to folinic acid. As I said, I know very little about SNPs (but I just sent in my 23andme test kit). Which MTHFR SNPs have problems with folinic acid? Is it certain MTHFR C677T? Or more. And Rich said they're "slow" at converting folinic acid to methylfolate so does that mean low doses won't cause problems (but not be helpful either)? And are they still able to use folinic acid for other functions?I think he meant exactly what he said. Folinic acid. Then he gives an example where SNPs are prevalent and have big impact (i.e. MTHFR). He also says many can convert folinic acid and many others have SNPs that slow this conversion (here he is talking MTHFS).
So why from that statement do you believe he thinks MTHFS Snps are rare?
In fact if you look at the information for MTHFS Snps in the public databases they are not rare. The question I took away from the thread you linked was which SNPs are relevant. And that appears to still be unknown. Heck the one implicated in that thread by Nandixon and Rich Vank is dominantly heterozygote, so by definition that particular SNP is NOT rare.
Can I ask why you are trying to re-interpret all of Rich's posts? Are you trying to better understand them for yourself? Do you feel they are getting forgotten on these forums? If the former then that makes sense but then wouldn't it be better served to ask direct questions of the community?
Again, that's what I'm trying to find out, but until someone proves otherwise what do you expect me to do? I agree that we need more information, but I should remind you how this thread started out. It was referencing a study that showed folinic acid to be beneficial to significant majority of people with CFS. We're never going to find a perfect protocol that suits everyone's needs (and I'm not referring to just methylation). Maybe we will find out that folinic acid is bad, but until then I'm asking the questions that very few are willing to ask. Are we going to discard everything because just a few people have problems? What about alpha lipoic acid and carnitine for people with thyroid problems? Even if it turns out they have a minimal effect on thyroid function you get my point. What about certain supplements for people with a CBS mutation? Or BHMT?If the latter then might I suggest you be careful of the interpretations? In this case I think your supposition is not only incorrect but could really confuse people. Sorry
dbkita
And if you feel like answering my questions from my post above, I'd appreciate it because I started a thread in the SNP forums about the issue of both folic acid and folinic acid and not one person has posted any answers even though it's been a week and it has 75 views.
http://forums.phoenixrising.me/inde...d-and-or-folinic-acid-mthfr-mthfs-more.22419/
dbkita
You seemed object to me reposting some of Rich's quotes, but maybe I read too much into your statement. As always, I appreciate your answers to my questions. So if MTHFR doesn't have a problem with folinic and MTHFS possibly also needs a defect in SHMT (which Rich and Nandixon discussed in that thread), do we have any idea how common the issue is? Since Rich has 200 mcg of folinic acid in the most recent revision of his protocol and he was participating in that thread by Nandixon prior to that he seemed to think 200 folinic would be fine for most people.
I don't take any 5mthf (methylfolate) now. I found out that the Jarrow B Right B complex that caused me problems only had 50 mcg of Quatrefolic methylfolate. I took it twice a day, but that's still only 100 mcg of methylfolate. Even too much hydroxocobalamin and folinic acid seem to cause me problems right now. I have a children's chewable multi with a small amount of coenzymated b vitamins and folinic acid which I'm taking sublingually. That's the only folinic I'm getting now except dietary folate.
I have to think the 81% study suggests the folinic acid pileup problem is not that common. Again I think most do not react horribly to the 200 mcg in Rich's protocol. But I think Rich and Freddd have both been trying to understand why some people do. Personally I have the SHMT defect but that alone seems to imply some (at least small) need for folinic acid. I do have several MTHFS SNPs but folinic acid does not bury me when I take it. I have talked to Freddd about my reactions to folinic acid. It is just what I would expect, my reaction is a sort of like to a slightly inferior form of L-5mthf and that was taking 800 mcg of folinic acid a day. I still contend if L5mthf is causing you issues, you have a problem going the folinic acid route since the best you can hope for is the folinic acid steadily converts to l5mthf and then you are right back where you started as you cannot tolerate 100 mcg of the latter. I would eschew folic acid and test one at a time carefully. If neither work then you have to reconsider another factor is pre-eminent whatever that factor is. Sorry I can't be more enlightening.dbkita
You seemed object to me reposting some of Rich's quotes, but maybe I read too much into your statement. As always, I appreciate your answers to my questions. So if MTHFR doesn't have a problem with folinic and MTHFS possibly also needs a defect in SHMT (which Rich and Nandixon discussed in that thread), do we have any idea how common the issue is? Since Rich has 200 mcg of folinic acid in the most recent revision of his protocol and he was participating in that thread by Nandixon prior to that he seemed to think 200 folinic would be fine for most people.
I don't take any 5mthf (methylfolate) now. I found out that the Jarrow B Right B complex that caused me problems only had 50 mcg of Quatrefolic methylfolate. I took it twice a day, but that's still only 100 mcg of methylfolate. Even too much hydroxocobalamin and folinic acid seem to cause me problems right now. I have a children's chewable multi with a small amount of coenzymated b vitamins and folinic acid which I'm taking sublingually. That's the only folinic I'm getting now except dietary folate.
So far I've done okay with totally dropping any folic or folinic acid and carefully titrating up the Methylfolate (about 25 mcg every other day). Of course it's only been about a week and a half or something. I've also tried to add foods with the highest levels of folate to my diet to offset the potential deficiency.It took about 3 dosages of the 25 mcg (1 every other day) before it became tolerable enough to move up in dosage (I'm COMT++). So now I'll see what happens.
The 2 most difficult start-up effects that I have are that 1) the muscles in my lower legs and feet get very tight, as though twisting, and my feet get freezing cold and numb (although the cold/numb aspect went away over the course of the 3 dosages). There is also a small amount of this for my hands and forearms, which will feel stiff; and 2) there is exhaustion on the day that I take it and the next morning. Other more easily tolerated start-up effects are temperature fluctuation (feeling like I have a fever when I don't) for about half the days on the first couple of dosages, and sore breasts (I presume from increased estrogen?).
Potassium (800 mg as coconut water), made virtually no difference in the muscle / cold feet effect, so I tried increasing the B-multi (w/o folic or folinic), but its not clear that did anything either. It's possible I need to increase methyl-B12 / adeno but I'd rather not do that unless I absolutely have to, and since the effects wear off in a few days (in my very limited experience so far), I'm going to see if I can just manage it without changing the B-12. I'm already at 7000 mcg/day and basically do fine. However, I'm also in the process of increasing my thyroid dosage and at times I find I'm overstimulated, so I will have to see how things fall out.
I guess the thing I'm working toward is getting up to a reasonable dosage of methylfolate in an amount of time that will not allow a significant deficiency to happen. I went gluten free in Nov of last year and so suddenly the massive folic acid load was cut in half. By Dec I'd gotten a terrible canker sore in my mouth that took a full 2 weeks to heal and I'm convinced that was a folate deficiency issue. I've never had anything like that. I think cutting out most folic/folinic + not having any methylfolate except the weird combo in B-Right (350 folic, 50 methylfolate), plus having malabsorption, as I seem to, sort of pulled the rug out from under me. I'm doing okay lately and haven't been sick at all in weeks now.
Possibly I should post this on a different thread, I was just here, and started writing, sorry.
I have been gradually reducing folic acid although 1500 mcg of folic acid didn't block 100 mcg of methylfolate so I don't quite know if I have a problem with folic acid. Rich seemed to think the fact that folic acid uses up NADPH was a good enough reason not to take it so at least cutting back or eliminating folic acid would help me in that regard. But is it possible for folic acid to build up if I'm not converting enough and yet not block methylfolate? That's the big sticking point and I haven't been able to find an answer.
Actually, with that children's multiple I've been taking recently I seem to feel really good after taking it. I have no idea why. The dosages are so small. There's only 25 mcg folinic acid in one tablet. I'm taking it sublingually and it takes a few hours to dissolve, but still. This is it if anyone's interested.
http://www.integratedhealth.com/vitamin-formulas/kids-mighty-multi-chewable.html
I have no idea what ingredient it is that seems to help.
Hi Victronix,
A week ago I read an article that said that most of the coconut water tested didn't have the labeled amount of potassium. You might try some other sources of potassium as a A-B trial.
Actually, with that children's multiple I've been taking recently I seem to feel really good after taking it. I have no idea why. The dosages are so small. There's only 25 mcg folinic acid in one tablet. I'm taking it sublingually and it takes a few hours to dissolve, but still. This is it if anyone's interested.
http://www.integratedhealth.com/vitamin-formulas/kids-mighty-multi-chewable.html
I have no idea what ingredient it is that seems to help. There's only 6.5 mcg methylcobalamin in one tablet. I know Caledonia claims to get benefit from 1-2 mcg of methylcobalamin, but I'm a bit skeptical (no offense). I admit I don't know much about SNPs so maybe there's an explanation.
Hi Lotus,
I think the thing with folic acid -- is that it's a synthetic compound -- so that while some perhaps can break it down, that in general, it probably requires extra steps in order to do so?
From wiki: "Folic acid is itself not biologically active, but its biological importance is due to tetrahydrofolate and other derivatives after its conversion to dihydrofolic acid in the liver."
You might try doing a search for some of 'Asklipia's' posts -- she believed the problem with 'folic acid' was the glutamate attached to it. And wikipedia again, confirms that it's also known as "pteroyl-L-glutamic acid, pteroyl-L-glutamate, and pteroylmonoglutamic acid".
I did the methylation test that Rich recommended, and indeed, at least in my case, it showed that while my folic acid levels were high, I was pretty much unable to convert them into folinic or methylfolate -- they were both very low on the test. And Rich did suggest that this was the pattern he was seeing on practically everyone's results, in fact, he thought parts of mine were better than others he had seen. I'm not sure if that means that folic acid was blocking methylfolate, but it was certainly 'building up', and not converting well at all.
That's a cool multi you found -- nice tiny amounts of various vits/minerals for those of us who can be very sensitive to supplements.
apologies if this is off topic... but a post earlier in the thread got me thinking about this... if a person is very deficient in lithium and therefore has a problem with b12 transport, and then they go supplementing folate (which they are also deficient in) would that aggravate the b12 problem?
thanks.
Ok. I am fine with the reality I am not able to answer all of your question to your satisfaction. And forgive me for saying this, but nor will I try to. You go looking at old posts of Rich's. Bump them up. Ask a question and often add your own interpretation to it. Personally I would not feel comfortable adding an interpretation unless I KNOW I am correct. I would let Rich's posts speak for themselves and open up new threads as needed. But maybe that is just me.
When I look at the first page of the forum every day there is a lot of turnover, as other posts if not immediately replied to end up off the first page since you keep recycling stuff up. I am sorry no one got to answer your other question with 75 views. Heck I asked a question on SHMT that no one ever answered. Asked another one on sarcosine with one response but many views. And they all slide off into oblivion. What do you want me to say? I did not even see that thread due to all the churn on the first page
Rich was a great person who helped a lot of people and we should all be thankful for that. But I don't get all my information from his posts. There are many other sources than these forums. Personally I have realized that these forums cannot or will not answer most of my burning questions. So I have to look elsewhere. End of story. I only choose to still hang out to help people when I can. My own benefit from these forums is waning rapidly. C'est la vie.
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Good luck and God Bless!
I have to think the 81% study suggests the folinic acid pileup problem is not that common. Again I think most do not react horribly to the 200 mcg in Rich's protocol. But I think Rich and Freddd have both been trying to understand why some people do. Personally I have the SHMT defect but that alone seems to imply some (at least small) need for folinic acid. I do have several MTHFS SNPs but folinic acid does not bury me when I take it. I have talked to Freddd about my reactions to folinic acid. It is just what I would expect, my reaction is a sort of like to a slightly inferior form of L-5mthf and that was taking 800 mcg of folinic acid a day. I still contend if L5mthf is causing you issues, you have a problem going the folinic acid route since the best you can hope for is the folinic acid steadily converts to l5mthf and then you are right back where you started as you cannot tolerate 100 mcg of the latter. I would eschew folic acid and test one at a time carefully. If neither work then you have to reconsider another factor is pre-eminent whatever that factor is. Sorry I can't be more enlightening.