What is Methyl Trapping ?

Messages
98
@surfbaby, I don't use hydroxy, I inject methyl. My advice is not go too much on snps when choosing your supps, but rather try stuff and see what works for you.

Yasko's recs based on DNA don't have a very good rep with a lot of smart people around here whose brains I really respect. She seems to churn out a lot of recs based on not much evidence, either scientific or heavily documented anecdotal.

FWIW, my take on scientists and healers who gain some celebrity with really good, sound, cutting edge advice and theories early on often resort to churning out questionable advice and theories later on, possibly just to try and stay on the cutting edge and maintain "preeminence" and celebrity in their field. That may or may not be the case with Yasko, but it's a definite phenomenon and therefore worth considering in her case. The urge to stay ahead of the pack can be very potent in any career.

At any rate, since she can't have any idea all snps a person has, or how those snps are going to interact with one another, it's probably not good to base a protocol based on DNA recs without trying all avenues. Try cautiously, if you're leery of bad effect, but by all means try everything before you make a decision.

I love injectable mB12 and plan never to be without for the rest of my life. Worth noting is I have multiple MTRR mutations which are supposed to affect my B12. But I found this out after I already fell in love with the injectable mB12. Analysis of my DNA has served mostly as confirmation about things I've already observed about my body.

I think snps are probably most useful as a guide of where to start your course of healing, and to keep you pointed in the right directions, but not necessarily as a guide to what forms of the supplements you choose to take. For example, I tried injectable mB12 simply because I wasn't getting the results I wanted from sublingual mB12, and the methyl form is supposed to pack the biggest punch. If I didn't like methyl I would have then tried hydroxy. I never had to try hydroxy because methyl is exactly what I need, but that's how it would have gone if mB12 hadn't worked for me. That's basically how I've chosen every form of supplement I use. I don't worry about what the literature says, it's all about what my body says. And we don't really know what our body says about a thing until we try the thing out.

So if you want to try hydroxy, do it. But if it doesn't give you the results you want or think you should have, try methyl. Don't get too hung up on your snps at any point.

Just my $0.02. Good luck! :)

Edited to add: the dosing schedule depends upon the person. I used to do best taking a big injection in the morning and sometimes a small one later in the day, and then dividing my folate dose into small multiple doses throughout the day. Now I just take a small injection and a small amount of folate in the morning. That lasts me all day.

When I needed big injections I went with the 12.5mg/ml formulation of mB12. I would inject about half a mg of that. Now I get the 1mg/ml formulation and do about 1/3 - 1/2 mg per day of that. Formulation doesn't really matter as far as how much b12 you can take...it's possible although not desirable to inject 12 full mg of B12 from a 1mg/ml formulation. But that would take a loooong time to draw and it would sting going in. You'd have to divide it up into multiple injections.

But if you get the 12.5mg/ml formulation if you need a larger dose, you can draw a much smaller amount into a small insulin syringe with a very, very thin needle, but still get your bigger dose. These days I can get by with an insulin syringe even with the 1mg/ml formulation, because I don't need more than 1ml per day.

I inject subcutaneously into my abdominal area. Most of the time I don't feel a thing. The needle is very thin and the area is not sensitive. The needle isn't going into your muscle, which is what usually hurts the most when getting a shot. My daily B12 injections are almost like watching someone else get injected. Literally.
Thanks so much for your input. I will definitely take the Yasko recs with a grain of salt. The only reason I think it might be something good to try, is because of previous bad experience with MB injections and some of the symptoms I've had with FP, which may not have anything to do with MB sublinguals I'm taking. As mentioned before it could be from major hormone fluctuations too. I just remember feeling great when I used to take Hydroxy injections years ago. Also I still have a lot of problems with taking Adeno after trying to titrate for months, and with Hydroxy injections I might not have to take extra Adeno since Hydroxy breaks down into MB + Adeno.

I am concerned about switching since Freddd is opposed to anything besides MB, and he also felt that way over 10 years ago when I contacted him on a different forum when I was taking Hydroxy injections for a severe B-12 deficiency that almost crippled me (which was caused by a very high folic acid, not MF, medical protocol that threw my B-12 way out of balance, and is why I think it's important to get the doses right). I had a bad reaction to MB injections at that time which is why I was taking Hydroxy, although years later I did try small doses of MB injections but never could figure out a dose that made me feel better, although I didn't know about MF back then. I'm not opposed to MB injections in the future when my doses are higher, but for now if I'm going to try anything different from the MB sublinguals, I would like to try Hydroxy injections first. (And as mentioned before for some reason MB sublinguals agreed with me better than Hydroxy sublinguals in the past, but it seemed to be the opposite with the injections. Don't know why, but maybe it was because I wasn't taking MF and doing FP like now.)

I have had quite a bit of experience with doing both Hydroxy and MB subcutaneous injections with very small insulin needle (using more concentrated formulation like you) in the past but not with this protocol, so I feel comfortable with doing them, just not thrilled. I know what you mean about the different concentrations, but I just wasn't sure if the formulation mattered, because it seems like a more concentrated solution might take longer to be absorbed, and perhaps that would have to be factored in.

When you started your MB injections, how did you know how to translate the amount you were taking sublingually into injectable? I know it will be trial and error, but it would be good to have some kind of starting point. I was thinking that if someone was going from MB sublingual to MB injectable, they might start with a dose of 20% since I think that's the maximum amount that Freddd says you absorb from a 5 star sublingual like the ET MB sublingual I take. Is that right? It would then be a bit more complicated to then translate that into a Hydroxy injection dosage, because Hydroxy still has to break down into MB + Adeno, so you would probably have to inject more Hydroxy than if you were injecting MB, as you would likely ultimately get less MB from a Hydroxy shot. If I at least had a starting point of the amount someone going from MB sublingual to MB injectable would take, then I could just guess at a slightly higher Hydroxy dose to try. Or I could just start with the standard dose of 1mg, but I would be concerned about the amount of folate I'm taking now being out of balance with such a low dose (too much folate in proportion to the small amount of MB I might get from only 1mg Hydroxy, and remember what happened to me 10 yrs ago). Do you know anyone else in the forum who might be able to help?

I like the idea of one injection per day to start and then spreading out the folate in 3 doses throughout the day of 700-800mcg each like I'm doing now. When you said you started that way with small folate doses, how big were your folate doses and how often? You said you were doing about half a mg of 12.5mg/ml (about 6mg MB injected), so I'm just wondering in proportion how much folate you were taking with that. You must have been at much higher doses than me at that time, because I only take 5.5mg/day ET MB now, but that's sublingual. It seems to make sense to stick with the folate dose I'm doing now, if only I can get the Hydroxy dose right. One injection should do the trick because Hydroxy supposedly stays in the body longer and it takes longer to break down. The pharmacist said that people who take MB daily might only need to do Hydroxy every other day, but she doesn't know anything about FP, so I don't want to go by what she says.

Hope to hear back from you soon as you are giving me the only hope that I might be able to figure this out at this point. I'm not great with change, tho I should be brave and try something different if I'm still not feeling great. But if it seems too risky, I might just stay with the MB sublinguals for awhile. On a completely random note, do you have any idea on how to titrate Sam-e? I used to take that with no problem 5 years ago but cannot tolerate it now. A couple hours after taking it, it makes me feel completely spun out and almost nonfunctional all day, but the next day I wake up feeling very motivated. The Nature Made I have and most of the ones I've seen are enteric-coated, and it doesn't seem like you should be cutting those up. Still hoping to hear from @caledonia about the Hydroxy and DNA results, and she probably has some good ideas about titrating Sam-e. Thanks again for your help!
 
Messages
98
Hi @surfbaby I don't know anything about injecting B12. @Freddd, @whodathunkit @garyfritz all use injectable B12, not sure about answers re Hydroxy. good to see you back.
Good to hear from you! I got some very useful information from whodathunkit and hoping to get more. @garyfritz isn't doing injections anymore. I don't know why I thought you were. Do you think it would be worthwhile trying to contact Freddd? He had not been posting on the forum for a long time when I started a few months ago. He would probably be opposed to switching to Hydroxy, but I'm thinking of it more as just a trial to see how I feel and not necessarily anything permanent. Of course it would be easier to just stay on the MB sublinguals, but I'm curious to see how I feel on the Hydroxy injections since I felt good on them 10 years ago. whodathunkit didn't think I should put too much weight on Yasko recommendations based on DNA results. What do you think?

Do you have any idea on how to titrate Sam-e? I used to take that with no problem 5 years ago but cannot tolerate it now. A couple hours after taking it, it makes me feel completely spun out and almost nonfunctional all day, but the next day I wake up feeling very motivated. The Nature Made I have and most of the ones I've seen are enteric-coated, and it doesn't seem like you should be cutting those up. Still hoping to hear from caledonia about the Hydroxy and DNA results, and she probably has some good ideas about titrating Sam-e.
 

whodathunkit

Senior Member
Messages
1,160
@surfbaby: my biggest point was to LISTEN TO YOUR BODY, not so much to other people. That includes me. ;)

If you like hydroxy, then do that! I would have tried it if mB12 hadn't worked so well. But it did. We're all different.

I never worried about translating precise dosages, etc. I don't think it's possible to translate a dose of sublingual into injectable, since it's impossible to know how much sublingual is being absorbed. We can make educated guesses (Freddd does this), but really, no one can say for sure.

Generally speaking, I don't get too hung up on precise dosages for things that are so benign that we generally aren't affected by them if we take a bit too much. Basically, stuff like B12. When I say "unaffected" that doesn't mean that some people won't get bad sides from it because of their physiology...it means things that don't poison our livers or cause toxic reactions in general in larger amounts. There are some things like (for example) zinc or P5P that I won't take over a certain amount per day. But other things like mB12 or folate or B2, etc. I don't sweat too much. Larger doses for long periods of time not being the point. Larger doses only make sense when they're therapeutic. The object is to take as little of everything to keep you in optimal health. The ultimate goal being getting optimal nutrition from food. But for some of us that may not be possible, so the goal of taking as little as possible of whatever is good.

You must research and try things to figure out what is right for you. There has already been A LOT written on this board by Freddd and ahmo and others about titrating up folate and some of your other questions. For titration you could start is at 200mcg/day of folate and work from there. It's up to you to decide what to try, and then adjust up or down according to the feedback your body gives you. But please do some more reading because it seems like a lot of what you're asking has been covered better already. Try the sticky threads at the top of "Detox" forum for start.

I can't imagine a reason why anyone would need to inject both mB12 and hydroxyB12. But I am definitely no expert. I do know that if your body isn't able to break the hydroxy down, then it won't do you any good. This is why I chose to try mB12 first. But if hydroxy works for you then go with it.

As far as SAMe, I have almost no experience with it. I've tried it several times over the years but only got benefit from it during a very short window early on in Freddd's protocol. It made me feel worse when I tried it before that window and stopped working after the window.
 
Messages
98
@surfbaby I would say if it ain't broke, don't fix it. If you think it is broke, then make slow changes going by how you feel (like Whodathunkit is saying).

You're on pretty high doses of methylcolamin and methylfolate so if you're not getting mood swings by now (from COMT) I would say you're tolerating it.
I'm definitely rethinking making any changes right now, other than continuing to slowly titrate my current doses up. So you don't think I should put too much weight on Yasko's interpretations and recommendations? Do you tend to prefer methylcobalamin over hydroxycobalamin in general like most people on the forum? Also wondering if you have any comments or recommendations based on my overall DNA results since you have so much knowledge in that area.

Do you have any tips on how to titrate SAM-e? I have the Nature Made enteric-coated ones and was not sure if it was OK to cut them up. Have seen some encapsulated versions but I wasn't sure if they were as good because I thought enteric-coated was preferred, and the capsules had some ingredients that were iffy for me. Taking a whole Nature Made does bother my stomach a bit but mostly it just makes me almost nonfunctional from brain fog for a whole day, but I feel really energetic and motivated for awhile the next morning. If I take a whole one every day, then I never get past the brain fog to the "feel good" stage, so I think titrating would be necessary. I'm not sure how to go about it and which form/brand to purchase. Thanks for any info you can give me!
 
Messages
98
@surfbaby: my biggest point was to LISTEN TO YOUR BODY, not so much to other people. That includes me. ;)

If you like hydroxy, then do that! I would have tried it if mB12 hadn't worked so well. But it did. We're all different.

I never worried about translating precise dosages, etc. I don't think it's possible to translate a dose of sublingual into injectable, since it's impossible to know how much sublingual is being absorbed. We can make educated guesses (Freddd does this), but really, no one can say for sure.

Generally speaking, I don't get too hung up on precise dosages for things that are so benign that we generally aren't affected by them if we take a bit too much. Basically, stuff like B12. When I say "unaffected" that doesn't mean that some people won't get bad sides from it because of their physiology...it means things that don't poison our livers or cause toxic reactions in general in larger amounts. There are some things like (for example) zinc or P5P that I won't take over a certain amount per day. But other things like mB12 or folate or B2, etc. I don't sweat too much. Larger doses for long periods of time not being the point. Larger doses only make sense when they're therapeutic. The object is to take as little of everything to keep you in optimal health. The ultimate goal being getting optimal nutrition from food. But for some of us that may not be possible, so the goal of taking as little as possible of whatever is good.

You must research and try things to figure out what is right for you. There has already been A LOT written on this board by Freddd and ahmo and others about titrating up folate and some of your other questions. For titration you could start is at 200mcg/day of folate and work from there. It's up to you to decide what to try, and then adjust up or down according to the feedback your body gives you. But please do some more reading because it seems like a lot of what you're asking has been covered better already. Try the sticky threads at the top of "Detox" forum for start.

I can't imagine a reason why anyone would need to inject both mB12 and hydroxyB12. But I am definitely no expert. I do know that if your body isn't able to break the hydroxy down, then it won't do you any good. This is why I chose to try mB12 first. But if hydroxy works for you then go with it.

As far as SAMe, I have almost no experience with it. I've tried it several times over the years but only got benefit from it during a very short window early on in Freddd's protocol. It made me feel worse when I tried it before that window and stopped working after the window.
After hearing from everyone, I am rethinking the Hydroxy injections. Also I've been feeling much better the past few days. I think some of that jitteriness was definitely meno hormone surges. caledonia thought if I'm not having mood swings on the Methylfolate and sublingual Methylcobalamin doses I'm at now, I'm probably tolerating it. I think you might have misunderstood some of the things I was asking, and perhaps I didn't ask/explain them clearly enough or I was just being too wordy. I wasn't planning to inject both types of B12, I just meant that I had done the 2 different types at different times in my life. Your input is very valuable to me, since you have so much experience with the injections!

I have done a lot of reading, but it's hard to do as much as I would like because of my serious eye problems. I do know how to titrate my Methylfolate doses (ahmo was a big help there) and usually have to go slow, about 100mcg at a time every week or two. Sometimes longer or faster. Too fast can be rough with symptoms. My original plan for doing FP before getting the DNA results was to keep titrating up as long as it continued to make me feel better, and if the doses got too high to continue with sublinguals, I was going to switch to Methylcobalamin injections (not Hydroxy). And then hopefully I would get so much better like you did that I could titrate back down to smaller doses.

Hope you don't mind but I just have few more questions for now, just in case I decide to go forward with injections:

1. I'm just curious about how much Methylfolate you were taking when you started injecting about half a mg of 12.5 mg/ml MB a day? You said you were doing small multiple doses throughout the day. How many mcg or mg did you take per dose or total for the day, and was it oral Methyfolate or injections? I know I have to figure my own doses out, but sometimes it's helpful to see what someone else did in comparison.

2. Do you get preservative-free methylcobalamin injectable? The compounding pharmacy I use has preservative-free but it's very expensive. They do compound a preservative version with a small amount of benzyl alcohol and carry a commercial preparation containing paraben as a preservative. I am extremely chemically sensitive so the preservative-free is probably a no-brainer, but I just wondered if you had any experience here?

3. How long were you on the big injections before you were able to start titrating down to smaller doses, and how did you know it was time to start cutting back? Was it pretty clear from your symptoms that you knew what to do, or did you just experiment? Thanks for taking the time to write me, I really appreciate your input and sharing your experiences!
 

caledonia

Senior Member
I'm definitely rethinking making any changes right now, other than continuing to slowly titrate my current doses up. So you don't think I should put too much weight on Yasko's interpretations and recommendations? Do you tend to prefer methylcobalamin over hydroxycobalamin in general like most people on the forum? Also wondering if you have any comments or recommendations based on my overall DNA results since you have so much knowledge in that area.

Do you have any tips on how to titrate SAM-e? I have the Nature Made enteric-coated ones and was not sure if it was OK to cut them up. Have seen some encapsulated versions but I wasn't sure if they were as good because I thought enteric-coated was preferred, and the capsules had some ingredients that were iffy for me. Taking a whole Nature Made does bother my stomach a bit but mostly it just makes me almost nonfunctional from brain fog for a whole day, but I feel really energetic and motivated for awhile the next morning. If I take a whole one every day, then I never get past the brain fog to the "feel good" stage, so I think titrating would be necessary. I'm not sure how to go about it and which form/brand to purchase. Thanks for any info you can give me!

I don't have any preference for methyl or hydroxycobalamin. I'm from the school of "whatever works". Yasko's suggestions can be used as a starting point, but if it's not working, then try something else.

Although I would suggest avoiding the synthetic vitamin cyanocobalamin or at least large amounts of it. Someone Rich Vank knew took large amounts and developed cyanide toxicity.

For the SAMe, you might be able to split it if you take it with food to coat your stomach. The coating might be to prevent stomach irritation.

Note that SAMe is a methyl donor and you're already taking large amounts of methyl donors.

What worked really well for me for brain fog was CoQ10. SAMe is required to make CoQ10, so I'm not sure what is going on there if the SAMe is causing brain fog. Maybe some missing co-factor? Magnesium is a co-factor there along with ATP.
 
Messages
98

@whodathunkit I've been taking your advice and doing more reading and research, as much as my eyes and brain will allow. I did a lot of reading and posting when I started FP last October, but had to stop for a couple months because it flared up my eyes so badly. Because of years of eye problems from autoimmune eye disease damage, I'm not great at navigating online. It can take me several hours to several days to recover from being online, so unfortunately that makes it harder for me to progress as fast as I would like in the research dept. but i'm determined to not give up! [U][B]Could you explain more what a sticky thread is and how to find them?

Still hoping to hear back to my last few questions (repeated [/B][/U][B][U]below)[/U][/B]. I'm sorry if I've been bothering you too much or if I've said or done anything to offend. I really appreciate your valuable input and the time it takes to write back!

1. I'm just curious about how much Methylfolate you were taking when you started injecting about half a mg of 12.5 mg/ml MB a day? You said you were doing small multiple doses throughout the day. How many mcg or mg did you take per dose or total for the day, and was it oral Methyfolate or injections? I know I have to figure my own doses out, but sometimes it's helpful to see what someone else did in comparison.

2. Do you get preservative-free Methylcobalamin injectable? The compounding pharmacy I use has preservative-free but it's very expensive. They do compound a preservative version with a small amount of benzyl alcohol and carry a commercial preparation containing paraben as a preservative. I am extremely chemically sensitive so the preservative-free is probably a no-brainer, but I just wondered if you had any experience here?

3. How long were you on the big injections before you were able to start titrating down to smaller doses, and how did you know it was time to start cutting back? Was it pretty clear from your symptoms that you knew what to do, or did you just experiment? Thanks for taking the time to write me, I really appreciate your sharing your experiences!
 
Messages
98
@surfbaby I would say if it ain't broke, don't fix it. If you think it is broke, then make slow changes going by how you feel (like Whodathunkit is saying).

You're on pretty high doses of methylcobalamin and methylfolate so if you're not getting mood swings by now (from COMT) I would say you're tolerating it.

I don't have what most people would consider mood swings, most of the time my mood is fairly even. However there are several things I do experience that could be related, but keep in mind menopausal hormone surges could also be the cause. Just wondering if you think any of these could be connected to COMT and taking Methylcobalamin, and a reason to try the Hydroxy. Or hopefully it's part of the healing process from FP and is a positive thing:

1. I feel really jittery sometimes and can't figure out if it's hormone surges or MB. This used to happen several times a month from hormone fluctuations, but has been happening more often recently, like once or twice a week. I'm hoping it's my hormones trying to even themselves out after over a decade of severe perimenopausal symptoms. BTW years ago I tried bioidentical hormone creams but always overreacted to them even at extremely low minuscule doses, which could be from some of my detox SNPs.

2. I feel depressed sometimes when I first wake up in the morning for no apparent reason. That usually turns around fairly quickly, usually shortly after awakening. I take my methylfolate is soon as I wake up, so maybe that's what helps. I think this depression occurs more frequently since I've been on FP, but not completely certain.

3. I don't usually feel anxious, but when something very stressful occurs, especially unexpectedly, I have a panic-type reaction that can even affect my speech and communication. However this is not new, and I had it a lot worse when I had that B-12 deficiency 10 years ago. I used to have aphasia often then, but that had gotten a lot better until this past year, but I think if might have started up after the EDTA chelation I did briefly last year (4/15-8/15). However It has occurred more often recently, so it could be related to MB, but I've also had a lot more stress lately too.

4. I don't usually have dreams that I'm aware of, but I used to wake up from vivid dreams feeling overly "neurologic" brain symptoms (very briefly seeing unusual rapidly flashing visions with my eyes closed upon awakening, which can be intense) almost every month both at ovulation and PMS. (I still have cycles, though I'm probably no longer producing viable eggs, and I haven't had a period since I had my prolapsed uterus removed in 1989. I still have both ovaries.) Anyway I used to relate this completely to hormones cycles, and if only started happening after the brain problems I experienced from a severe B-12 deficiency 10 years ago. However now I'm having dreams and waking to neurologic-feeling brain symptoms more often, but not nearly as intense as at ovulation and PMS. This also passes very quickly almost as soon I get up, before I take anything. I think I remember Freddd posting that he had more dreaming after taking MB.

5. My energy levels have been better overall since FP, but sometimes when I'm not able to eat because I'm away from home, I feel like the bottom drops out on me and I get really lightheaded. I know it's not a good idea to not eat, but I never had this problem before. My blood sugar stayed pretty stable and sometimes I actually have more energy when I don't eat. Anyway when this happens, I've tried taking an extra 1/4 MB. Sometimes it gives me a boost and helps me until I can get home, and other times it doesn't help at all. I'm trying to figure out some kind of snack I can eat away from home, as I'm very sensitive to foods, but I'm only bringing this up because it's a completely new symptom since FP. Maybe it has something to do with potassium, which I usually take only with meals.
For the SAMe, you might be able to split it if you take it with food to coat your stomach. The coating might be to prevent stomach irritation.

Note that SAMe is a methyl donor and you're already taking large amounts of methyl donors.

What worked really well for me for brain fog was CoQ10. SAMe is required to make CoQ10, so I'm not sure what is going on there if the SAMe is causing brain fog. Maybe some missing co-factor? Magnesium is a co-factor there along with ATP.
Is the reason you cautioned about SAMe being a methyl donor is because I could get overmethylated since I'm already taking large amounts of methyl donors? I was only trying to add it because it was the next step in FP. Hopefully my body is starting to make its own SAMe because I think I would need to start on a much smaller dose than half a tablet. I had hoped you had some special trick for titrating it. A friend suggested maybe cutting it up smaller and then putting the smaller pieces into capsules. What do you think of that idea? You're supposed to take SAMe on an empty stomach, so I'm not sure how taking it would food would work. Do you know anyone else on the forum that is good at titrating things like you are that I might contact? ahmo said Freddd is posting again, so maybe I could ask him, though I don't know if he writes back to everybody.

I have tried COQ10, but it's just way too strong for me, makes me feel more neurologic symptoms in my brain and legs. One brand was agreeing with me for several months but then suddenly stopped agreeing with me when I got a new bottle. I then tried a different brand because the previous brand was inconsistent in quality, but it also disagreed with me at times. However I have not tried it since being on FP. All the good versions are in softgels, so no way to titrate that, and they are usually pretty high in mg. Any recommendations on brands or formulations? I was taking different brands of the Kaneka formulation, which is the most potent, so maybe that's where I went wrong.
 

caledonia

Senior Member
I don't have what most people would consider mood swings, most of the time my mood is fairly even. However there are several things I do experience that could be related, but keep in mind menopausal hormone surges could also be the cause. Just wondering if you think any of these could be connected to COMT and taking Methylcobalamin, and a reason to try the Hydroxy. Or hopefully it's part of the healing process from FP and is a positive thing:

1. I feel really jittery sometimes and can't figure out if it's hormone surges or MB. This used to happen several times a month from hormone fluctuations, but has been happening more often recently, like once or twice a week. I'm hoping it's my hormones trying to even themselves out after over a decade of severe perimenopausal symptoms. BTW years ago I tried bioidentical hormone creams but always overreacted to them even at extremely low minuscule doses, which could be from some of my detox SNPs.

2. I feel depressed sometimes when I first wake up in the morning for no apparent reason. That usually turns around fairly quickly, usually shortly after awakening. I take my methylfolate is soon as I wake up, so maybe that's what helps. I think this depression occurs more frequently since I've been on FP, but not completely certain.

3. I don't usually feel anxious, but when something very stressful occurs, especially unexpectedly, I have a panic-type reaction that can even affect my speech and communication. However this is not new, and I had it a lot worse when I had that B-12 deficiency 10 years ago. I used to have aphasia often then, but that had gotten a lot better until this past year, but I think if might have started up after the EDTA chelation I did briefly last year (4/15-8/15). However It has occurred more often recently, so it could be related to MB, but I've also had a lot more stress lately too.

4. I don't usually have dreams that I'm aware of, but I used to wake up from vivid dreams feeling overly "neurologic" brain symptoms (very briefly seeing unusual rapidly flashing visions with my eyes closed upon awakening, which can be intense) almost every month both at ovulation and PMS. (I still have cycles, though I'm probably no longer producing viable eggs, and I haven't had a period since I had my prolapsed uterus removed in 1989. I still have both ovaries.) Anyway I used to relate this completely to hormones cycles, and if only started happening after the brain problems I experienced from a severe B-12 deficiency 10 years ago. However now I'm having dreams and waking to neurologic-feeling brain symptoms more often, but not nearly as intense as at ovulation and PMS. This also passes very quickly almost as soon I get up, before I take anything. I think I remember Freddd posting that he had more dreaming after taking MB.

5. My energy levels have been better overall since FP, but sometimes when I'm not able to eat because I'm away from home, I feel like the bottom drops out on me and I get really lightheaded. I know it's not a good idea to not eat, but I never had this problem before. My blood sugar stayed pretty stable and sometimes I actually have more energy when I don't eat. Anyway when this happens, I've tried taking an extra 1/4 MB. Sometimes it gives me a boost and helps me until I can get home, and other times it doesn't help at all. I'm trying to figure out some kind of snack I can eat away from home, as I'm very sensitive to foods, but I'm only bringing this up because it's a completely new symptom since FP. Maybe it has something to do with potassium, which I usually take only with meals.

Many of the things you're talking about in this section sound like the adrenals. The mood swings I've heard about are like severe anxiety and depression as if you've become bipolar. Can be enough to go to the ER.

EDTA chelation is not the best method and could actually backfire and cause redistribution of metals. In that case, there can be a dump phase 6-9 months after chelating which can cause an exacerbation of many symptoms.

I have actually been going through this myself. I did one round of chelation around April of last year and I think I'm just now starting to come out of it.

This is reason I've been looking in to Cutler's frequent dose chelation protocol. You have to take the chelators within their half life or you will get redistribution of metals. In other words, you can't just take them once a day. EDTA is not recommended.

Is the reason you cautioned about SAMe being a methyl donor is because I could get overmethylated since I'm already taking large amounts of methyl donors? I was only trying to add it because it was the next step in FP. Hopefully my body is starting to make its own SAMe because I think I would need to start on a much smaller dose than half a tablet. I had hoped you had some special trick for titrating it. A friend suggested maybe cutting it up smaller and then putting the smaller pieces into capsules. What do you think of that idea? You're supposed to take SAMe on an empty stomach, so I'm not sure how taking it would food would work. Do you know anyone else on the forum that is good at titrating things like you are that I might contact? ahmo said Freddd is posting again, so maybe I could ask him, though I don't know if he writes back to everybody.

I have tried COQ10, but it's just way too strong for me, makes me feel more neurologic symptoms in my brain and legs. One brand was agreeing with me for several months but then suddenly stopped agreeing with me when I got a new bottle. I then tried a different brand because the previous brand was inconsistent in quality, but it also disagreed with me at times. However I have not tried it since being on FP. All the good versions are in softgels, so no way to titrate that, and they are usually pretty high in mg. Any recommendations on brands or formulations? I was taking different brands of the Kaneka formulation, which is the most potent, so maybe that's where I went wrong.

Yes, if you try SAMe, it might be a good idea to back off on the other methyl donors some.

The gel cap idea might work, or at least I think it would be worth trying. Maybe double gel caps so they take longer to absorb?

I don't know if the empty stomach thing is totally necessary or not. I can't swallow pills without food to help push it down, so I never do that, and pills still seem to work.

I was doing well with Sam's Club CoQ10 (100mg). You can titrate gel caps by using a pin to puncture the capsule and squeezing out some oil, but it's kind of messy.

After I started methylation supps, I didn't need CoQ10 anymore, because presumably I was making my own.
 
Messages
98
Many of the things you're talking about in this section sound like the adrenals. The mood swings I've heard about are like severe anxiety and depression as if you've become bipolar. Can be enough to go to the ER.

EDTA chelation is not the best method and could actually backfire and cause redistribution of metals. In that case, there can be a dump phase 6-9 months after chelating which can cause an exacerbation of many symptoms.

I have actually been going through this myself. I did one round of chelation around April of last year and I think I'm just now starting to come out of it.

This is reason I've been looking in to Cutler's frequent dose chelation protocol. You have to take the chelators within their half life or you will get redistribution of metals. In other words, you can't just take them once a day. EDTA is not recommended.
@caledonia @ahmo I had to take a break from the computer per eye doctor, but I appreciated your sharing this information. (If it wasn't for this eye problem, I could do so much more research online! I keep hoping the protocol will help my eyes improve.)

I think I've been going through the same thing as you with the EDTA recovery. Shortly after I posted you about possibly switching to Hydroxy injections (which I am postponing for now and might do Methylcobalamin instead if I ever do injections), I started feeling a lot better. My energy levels have been more even, and I've been happier and more motivated every day. I really think a big part of it was menopausal hormone fluctuations, but I seem to be doing a little better even with those. I'm hoping the methylation protocol is starting to really kick in and maybe I'm making my own SAM-e and possibly COQ10. I like your idea of the double gel caps for the SAM-e if I decide to try it again. I'm definitely starting to feel my brain coming back online more of the time.

Hope you don't mind answering a few questions:

1. Have you actually started the Cutler protocol yet? I'm a little afraid of more chelation. Have you heard of Christopher Shade's protocol (Quicksilver Scientific)? My holistic dentist swears by that one, and does not recommend Cutler, and definitely not EDTA. I might get my heavy metals retested first before I decide.

What do you think of zeolite for removing heavy metals, and what type would you recommend? My regular doctor used to use that and still recommends it, but he also does EDTA!

2. I know people are always asking about whether the ratios between the amount of Methylfolate and Methylcobalamin they are taking seems right. I still haven't completely figured that out. I usually increase MF by 100mcg first ever 1-2 weeks or so, and if that seems to agree with me, I then increase MB by 250mcg. Sometimes I have to back off on one or the other and try again in a day or two. I'm just wondering if you agree with the theory of increasing them both steadily rather than just focusing on increasing one or the other more.

When I increase MF, I often have more symptoms with burning lips, mouth, tongue (an ongoing problem for me for the past 5-8 years, way before FP) and sometimes increased burning hands, stomach and watery eyes and very slight headache, but I get a feeling of relaxed well-being and also skin improvement sometimes. Increasing MB can help counteract some of the side effects of MF, and ahmo told me she used MB that way rather than niacin/nicotinamide to counteract histamine reaction (I'm not sure that's what I'm having, but the extra MB often will help.). Then as ahmo suggested previously, I decide whether or not I should keep the increase in the MB as well, and I usually do, unless I feel jittery. Does this sound like a good game plan to you? I wasn't sure I was in balance with MF/MB, but feeling so much better the past couple weeks has been wonderful and makes me feel like I'm on the right track.

3. Do you recommend any specific probiotics? What about SBO's (soil-based organisms)? Some on the forum were having results from an E. coli type probiotic. My environmental/allergy doctor had me on a type of E. coli during a gut protocol in the 90's?

How do you feel about plain Greek yogurt, the authentic kind with no additives, only milk and probiotics? I have felt better on a modified anti-candida diet since the late 80s, so I have not had dairy in many years and I'm not sure if this is something I should try, although having a new food in my diet would be great!

Thanks so much for your input. I really appreciate this forum, especially ahmo and you.
 

caledonia

Senior Member
@caledonia @ahmo
Hope you don't mind answering a few questions:

1. Have you actually started the Cutler protocol yet? I'm a little afraid of more chelation. Have you heard of Christopher Shade's protocol (Quicksilver Scientific)? My holistic dentist swears by that one, and does not recommend Cutler, and definitely not EDTA. I might get my heavy metals retested first before I decide.

I haven't quite started yet. I still need to find a vitamin C I can tolerate. The Cutler people say Shade's protocol is bad. Basically, the only protocol which is good is Cutler's because the dosing is within the half life of the chelators. So you dose every few hours instead of once a day. I would agree with this (learned through hard experience).

What do you think of zeolite for removing heavy metals, and what type would you recommend? My regular doctor used to use that and still recommends it, but he also does EDTA!

The only real chelators are ALA, DMSA and DMPS. I'm not sure what the Cutler people say about zeolite.

2. I know people are always asking about whether the ratios between the amount of Methylfolate and Methylcobalamin they are taking seems right. I still haven't completely figured that out. I usually increase MF by 100mcg first ever 1-2 weeks or so, and if that seems to agree with me, I then increase MB by 250mcg. Sometimes I have to back off on one or the other and try again in a day or two. I'm just wondering if you agree with the theory of increasing them both steadily rather than just focusing on increasing one or the other more.

Since you already know you tolerate both, you could try increasing both at the same time. If you start feeling worse, then you would want to back off both (basically undo what you just did). The only disadvantage - you're not going to know if it's one or the other if you do both.

When I increase MF, I often have more symptoms with burning lips, mouth, tongue (an ongoing problem for me for the past 5-8 years, way before FP) and sometimes increased burning hands, stomach and watery eyes and very slight headache, but I get a feeling of relaxed well-being and also skin improvement sometimes. Increasing MB can help counteract some of the side effects of MF, and ahmo told me she used MB that way rather than niacin/nicotinamide to counteract histamine reaction (I'm not sure that's what I'm having, but the extra MB often will help.). Then as ahmo suggested previously, I decide whether or not I should keep the increase in the MB as well, and I usually do, unless I feel jittery. Does this sound like a good game plan to you? I wasn't sure I was in balance with MF/MB, but feeling so much better the past couple weeks has been wonderful and makes me feel like I'm on the right track.

Assuming you're referring to methyl trapping, as long as you have somewhat more MB than MF, it's fine. I don't think there are any specific ratios, it's more whatever works for you. If you have a lot of B12 SNPs (MTR and MTRR) you might need a lot more MB than someone else.

3. Do you recommend any specific probiotics? What about SBO's (soil-based organisms)? Some on the forum were having results from an E. coli type probiotic. My environmental/allergy doctor had me on a type of E. coli during a gut protocol in the 90's?

I'm doing Vinco's probiotic with lactobacillus and bifidum. Then also sacro b. (saccharomyces boulardii).

My GP who is also a functional medicine doc just mentioned Mutaflor for chronic diarrhea. Mutaflor contains e. coli. (Note this is a different strain of e. coli than the bad one that makes you sick.)

How do you feel about plain Greek yogurt, the authentic kind with no additives, only milk and probiotics? I have felt better on a modified anti-candida diet since the late 80s, so I have not had dairy in many years and I'm not sure if this is something I should try, although having a new food in my diet would be great!

I would say it depends on how well you tolerate dairy in general. If you're lactose intolerant, you may feel worse.
I was making my own kefir with goats milk for awhile. I stopped it because of needing to do the CBS protocol, and never got back into it. But I was tolerating that better than cows milk yogurt. I could only do small amounts.

There are other non diary ways to get probiotics in food, such as sauerkraut and kimchi.
 
Messages
9
Rich gives a very good desribtion of it somewhere that could be found. Basically the "methyltrap" (hypothesis for 30 years or so) occurs when there is not enough MeCbl for the methylfolate in the cell to complete it's function and it is kicked out of the cell, causing distinctive folate deficiency symptoms instead of the MeCbl deficiency symptoms that would be expected. It is a more severe level of methylation block than the partial methylation block.



Hey i don´t know where to post this it relates to your statements that glutathione is supposed to cause methcbl to excrete into urin via cbnC !

fredd glutathione

Hi Adster,

The glutathione will protect you from both active forms of b12 hustling them out of the body much more rapidly than without the glutathioone and also inducing a severe folate deficiency in many. Taking the mb12 and Metafolin will alloow the needed levels of glutathione to be formed in the body. Taking glutathione or precursors like NAC will induce b12 and folate deficiencies rapidly and severely.

sorry mate : i don´t think this statement of yours makes any sense .
please read my intro and rest of post and then please present the science that you think proves that CBnC causes cobalamin excretion in the presence of GSH glutathione (precursors)

hey Fredd

i am new here but have been reading all your posts. the deadlock protocol makes pretty good sense.especially for those with mtr or mtrr . I have severe cfs and have mtrr homozygous and mthfr heteroz..( also comt both hetero but i don´t worry about comt, it just makes it unnecesseraly complicated , i just stay away from catecholamins where i can and try to reduce stress . .)

for my polymorphisms i am taking b12 (arnica apotheke methylb12 inject around 5mg ) or sublingual , adenosyl b12 once a week , alcal and carnitine fumarate and 1000 mcg folate. short route support with NT favor, lecithin, Phosphatidyl serine and choline , TMG 750mg. basics as needed. when i first got ill in 1999 my first good dr tested my amino acids : and my methionine was extremely low..his answer was to give methionine , well ok not so good but there you go : 16 years later i know why: mtr polymorphism , non functioning long route. this info brings me first to rich ( partial meth block ) and now to fredd and deadlock protocol.

just to make myself clearer and help you guys out there who are getting confused and frustrated by all this info:

i think you guys tend to overcomplicate stuff a bit and get too lost in the details , which gets overly confusing. So you are getting more symptoms after taking something, how can u be sure it even is from the sup-- i can´t and neither can 90 percent of people with cfs. it is my opinion that many many cfs symptoms are caused by a limbic system crosswire and most of the symptoms and the fluctuation are explainable through that. symptoms fluctuate on a daily basis, so much that i doubt anybody´s self-observation can be surely traced to a so called methyltrap , or intaking a certain substance. As you read peoples posts here or on other forums this becomes totally clear.
as a sidenote to my mention of limbic system/amygdala problems : I was healed in 2009 within 3 weeks of using 6 hours daily of ashok gupta amygdala retraining !! ( but that is also just a self observation nothing more, but i still think this is the most important factor in recovering.i got sick again after a severe trauma during the end phase of healing around 90 percent recovery ) then i could´t make enough time and motivation for the retraining, But if you haven´t tried this : try it first !! or do dynamic neural retraining by annie hopper . same thing.

keep doing your other stuff but stop obsessing about every little detail . you are most likely not going to know if your muscle twitching was caused by A B C or d. if a therapy like added b12 and folate works, it will start working, give it some time . stick to a fixed middle dose, stop all this tritrating nonsense . FACT: u can never know how much is being absorbed ! never !! but your body will use what you put in and throw out what he does´t need! thats what he does with all foods all the time and supplmts are foods!!

But this post is about something else. i just had to write this as an intro, as fredd uses self observation continuously to measure and deduct from it the supposed effects of treatment. it is very subjective and although the interplay between methy b12 folate and even carnitine and adenosyl b12 sound scientifically valid -- this type of selfobservation has its limits and has to be taken with a huge grain of salt ! I know fredd recovered using his protocol but i feel his presentation of his approach is not systematic enough and too subjective and complicated to be a real protocol.
Rich definitely had more sound science to back up his protocol and a study backing up his approach .( i am so sad he is no longer here ) But my hopes are that the deadlock protocol could also be this. but it needs a sounder, a calmer theory , a more down to earth explanation, based in its core science and it has to get rid of assumptive claims such as the one I am referring to here:

FREDD thanks for the good work and countless hours you invest trying to explain things to everyone.I am not dissing you, but have been around for a long time fighting this shit disease and i know that trying to measure effects of supplements by waxing and waning symptoms is impossible to do for someone with an illness where symptoms wax and wane all the time regardless of any conceivable factors!!


This brings me to the point where i think you may be giving faulty recommendations not based on sound science:

glutathione :
it does not make sense, when you tell people to not take glutathione or GSH precursors . There is no science that i can find to back this up. actually quite the opposite. and i don´t mean you looking at the color of your urine. glutathione increases effectiveness of the chaperone (cbbinding protein cbnC) in making it available inside the cell . There is no way that it increases its excretion in the urine . not that i could find any article or scientific proof for it . and i have been looking.

If you could please take the time to present the scientific proof of your theory that taking GSH precursors such as undenatured whey or NAC would lead to excretion of cobalamin in urine or methyl trapping or folate deficiency as u suggest above and in other threads. .
In my understanding glutathione helps b12 to be utilized better , actually having low glutathione causes b12 depletion and reduces its intracellular availability. Glutathione increases the factor by which cobalamin of any type can bind to CBnC and become available for further use by the body. Why would the body throw out a protein bound form of cobalamin that he invested energy in creating??

Rich´s protocol is aimed at raising glutathione-- as this is one point that is an actualy scientifcally proven fact ,tests repeatedly show : cfs people are low in glutathione . so why would raising glutathione through its precursors stand in the way of raising it with b12 and metafolin ?? having sufficient glutathione makes more b12 available . it is not being excreted!

i also recommend a better name for donut hole folate insufficiency or block ,or folate related mb12 insufficiency _ why don´t you call it "mb12 induced folate insufficiency" .. isn´t that what its supposed to be :
more available b12 uses up more folate , if it doesn´t keep up it creates folate insufficiency ( symptoms , if any)
or the opposite : too much folate with too little mb12 becomes plasma folate with none in the cells . "mb12 insufficiency folate syndrome"


back to GLUTATHIONE and its supposed interfering with b12 :
i am refering to this older post by rich,( posted by member lotus97 which seems to have gone unnoticed here and its related study on the chaperone ( protein ) cbC, which binds and converts different forms of cobalamins for enzyme type reactions and other uses inside the cell.he suggested it may apply to other forms of b12 not just cyanocobalamin . i don´t see why not, as cyanocbl is an unnatural form of b12 and the mechanism had to be in place long before the introduction of Ccbl.

RICH VAN K wrote :

in 2011 a paper was published by two researchers in Korea, Jeong and Kim. The abstract is pasted below.
The research they report was actually done on a bovine (cow) B12-processing complementation group and cyanocobalamin. However, the human complementation group is very similar, and I suspect that the results will also be similar for other forms of B12 than cyanocobalamin.

They studied the CblC complementation group. This is part of the B12 processing pathway that is found inside all cells. When a form of B12 comes into a cell from the blood by the usual transcobalamin route, it is bound to CblC, and its beta ligand (cyano-, methyl-, or adenosyl-) is removed. Then it is sent on to be converted back to methylcobalamin or adenosylcobalamin as needed by the cell.

In order for this processing to happen, the CblC complementation group must first bind the B12 form. The strength of binding is called the affinity (Kd), and it is measured in concentration units. The higher the affinity, the lower the Kd. It turns out that the bare CblC complex has a relatively low affinity for B12, compared to the concentration of B12 in the cells, and this would be unfavorable for the necessary binding, and would tend to lower the reaction rate.

What these researchers found is that normally glutathione binds to CblC, and in doing so, it increases the affinity of CblC for B12. And it does so by a whopping amount--over a factor of a hundred!!

Turning this around, if glutathione becomes depleted, as in ME/CFS and autism, the affinity of CblC for B12 is going to drop substantially. I suggest that the glutathione depletion, combined with its major effect on this affinity, is the reason the B12 dosage must be so high in treating ME/CFS and autism.

Best regards, Rich

Biochem Biophys Res Commun. 2011 Aug 26;412(2):360-5. Epub 2011 Jul 29.
Glutathione increases the binding affinity of a bovine B?? trafficking chaperone bCblC for vitamin B??.
Jeong J, Kim J.
School of Biotechnology, Yeungnam University, 214-1 Dae-dong, Gyeongsan-si, Gyeongsangbuk-do 712-749, Republic of Korea.

Intracellular B(12) metabolism involves a B(12) trafficking chaperone CblC that is well conserved in mammals including human. The protein CblC is known to bind cyanocobalamin (CNCbl, vitamin B(12)) inducing the base-off transition and convert it into an intermediate that can be used in enzyme cofactor synthesis. The binding affinity of human CblC for CNCbl was determined to be K(d)=?6-16 ?M, which is relatively low considering sub-micromolar B(12) concentrations (0.03-0.7 ?M) in normal cells. In the current study, we discovered that the base-off transition of CNCbl upon binding to bCblC, a bovine homolog of human CblC, is facilitated in the presence of reduced form of glutathione (GSH). In addition, GSH dramatically increases the binding affinity for CNCbl lowering the K(d) from 27.1 0.2 to 0.24 0.09 ?M. The effect of GSH is due to conformational change of bCblC upon binding with GSH, which was indicated by limited proteolysis and urea- induced equilibrium denaturation of the protein. The results of this study suggest that GSH positively modulates bCblC by increasing the binding affinity for CNCbl, which would enhance functional efficiency of the protein.

Copyright 2011. Published by Elsevier Inc. PMID: 21821010

so there you have it : glutathione helps b12 availability !

how could one believe that GSH depletes B12 ???it just makes no sense.
please post the science or links to studies

thanks
schesche



thanks chris[/QUOTE]
 

SJB944

Senior Member
Messages
178
Hey i don´t know where to post this it relates to your statements that glutathione is supposed to cause methcbl to excrete into urin via cbnC !

fredd glutathione



sorry mate : i don´t think this statement of yours makes any sense .
please read my intro and rest of post and then please present the science that you think proves that CBnC causes cobalamin excretion in the presence of GSH glutathione (precursors)

hey Fredd

i am new here but have been reading all your posts. the deadlock protocol makes pretty good sense.especially for those with mtr or mtrr . I have severe cfs and have mtrr homozygous and mthfr heteroz..( also comt both hetero but i don´t worry about comt, it just makes it unnecesseraly complicated , i just stay away from catecholamins where i can and try to reduce stress . .)

for my polymorphisms i am taking b12 (arnica apotheke methylb12 inject around 5mg ) or sublingual , adenosyl b12 once a week , alcal and carnitine fumarate and 1000 mcg folate. short route support with NT favor, lecithin, Phosphatidyl serine and choline , TMG 750mg. basics as needed. when i first got ill in 1999 my first good dr tested my amino acids : and my methionine was extremely low..his answer was to give methionine , well ok not so good but there you go : 16 years later i know why: mtr polymorphism , non functioning long route. this info brings me first to rich ( partial meth block ) and now to fredd and deadlock protocol.

just to make myself clearer and help you guys out there who are getting confused and frustrated by all this info:

i think you guys tend to overcomplicate stuff a bit and get too lost in the details , which gets overly confusing. So you are getting more symptoms after taking something, how can u be sure it even is from the sup-- i can´t and neither can 90 percent of people with cfs. it is my opinion that many many cfs symptoms are caused by a limbic system crosswire and most of the symptoms and the fluctuation are explainable through that. symptoms fluctuate on a daily basis, so much that i doubt anybody´s self-observation can be surely traced to a so called methyltrap , or intaking a certain substance. As you read peoples posts here or on other forums this becomes totally clear.
as a sidenote to my mention of limbic system/amygdala problems : I was healed in 2009 within 3 weeks of using 6 hours daily of ashok gupta amygdala retraining !! ( but that is also just a self observation nothing more, but i still think this is the most important factor in recovering.i got sick again after a severe trauma during the end phase of healing around 90 percent recovery ) then i could´t make enough time and motivation for the retraining, But if you haven´t tried this : try it first !! or do dynamic neural retraining by annie hopper . same thing.

keep doing your other stuff but stop obsessing about every little detail . you are most likely not going to know if your muscle twitching was caused by A B C or d. if a therapy like added b12 and folate works, it will start working, give it some time . stick to a fixed middle dose, stop all this tritrating nonsense . FACT: u can never know how much is being absorbed ! never !! but your body will use what you put in and throw out what he does´t need! thats what he does with all foods all the time and supplmts are foods!!

But this post is about something else. i just had to write this as an intro, as fredd uses self observation continuously to measure and deduct from it the supposed effects of treatment. it is very subjective and although the interplay between methy b12 folate and even carnitine and adenosyl b12 sound scientifically valid -- this type of selfobservation has its limits and has to be taken with a huge grain of salt ! I know fredd recovered using his protocol but i feel his presentation of his approach is not systematic enough and too subjective and complicated to be a real protocol.
Rich definitely had more sound science to back up his protocol and a study backing up his approach .( i am so sad he is no longer here ) But my hopes are that the deadlock protocol could also be this. but it needs a sounder, a calmer theory , a more down to earth explanation, based in its core science and it has to get rid of assumptive claims such as the one I am referring to here:

FREDD thanks for the good work and countless hours you invest trying to explain things to everyone.I am not dissing you, but have been around for a long time fighting this shit disease and i know that trying to measure effects of supplements by waxing and waning symptoms is impossible to do for someone with an illness where symptoms wax and wane all the time regardless of any conceivable factors!!


This brings me to the point where i think you may be giving faulty recommendations not based on sound science:

glutathione :
it does not make sense, when you tell people to not take glutathione or GSH precursors . There is no science that i can find to back this up. actually quite the opposite. and i don´t mean you looking at the color of your urine. glutathione increases effectiveness of the chaperone (cbbinding protein cbnC) in making it available inside the cell . There is no way that it increases its excretion in the urine . not that i could find any article or scientific proof for it . and i have been looking.

If you could please take the time to present the scientific proof of your theory that taking GSH precursors such as undenatured whey or NAC would lead to excretion of cobalamin in urine or methyl trapping or folate deficiency as u suggest above and in other threads. .
In my understanding glutathione helps b12 to be utilized better , actually having low glutathione causes b12 depletion and reduces its intracellular availability. Glutathione increases the factor by which cobalamin of any type can bind to CBnC and become available for further use by the body. Why would the body throw out a protein bound form of cobalamin that he invested energy in creating??

Rich´s protocol is aimed at raising glutathione-- as this is one point that is an actualy scientifcally proven fact ,tests repeatedly show : cfs people are low in glutathione . so why would raising glutathione through its precursors stand in the way of raising it with b12 and metafolin ?? having sufficient glutathione makes more b12 available . it is not being excreted!

i also recommend a better name for donut hole folate insufficiency or block ,or folate related mb12 insufficiency _ why don´t you call it "mb12 induced folate insufficiency" .. isn´t that what its supposed to be :
more available b12 uses up more folate , if it doesn´t keep up it creates folate insufficiency ( symptoms , if any)
or the opposite : too much folate with too little mb12 becomes plasma folate with none in the cells . "mb12 insufficiency folate syndrome"


back to GLUTATHIONE and its supposed interfering with b12 :
i am refering to this older post by rich,( posted by member lotus97 which seems to have gone unnoticed here and its related study on the chaperone ( protein ) cbC, which binds and converts different forms of cobalamins for enzyme type reactions and other uses inside the cell.he suggested it may apply to other forms of b12 not just cyanocobalamin . i don´t see why not, as cyanocbl is an unnatural form of b12 and the mechanism had to be in place long before the introduction of Ccbl.

RICH VAN K wrote :

in 2011 a paper was published by two researchers in Korea, Jeong and Kim. The abstract is pasted below.
The research they report was actually done on a bovine (cow) B12-processing complementation group and cyanocobalamin. However, the human complementation group is very similar, and I suspect that the results will also be similar for other forms of B12 than cyanocobalamin.

They studied the CblC complementation group. This is part of the B12 processing pathway that is found inside all cells. When a form of B12 comes into a cell from the blood by the usual transcobalamin route, it is bound to CblC, and its beta ligand (cyano-, methyl-, or adenosyl-) is removed. Then it is sent on to be converted back to methylcobalamin or adenosylcobalamin as needed by the cell.

In order for this processing to happen, the CblC complementation group must first bind the B12 form. The strength of binding is called the affinity (Kd), and it is measured in concentration units. The higher the affinity, the lower the Kd. It turns out that the bare CblC complex has a relatively low affinity for B12, compared to the concentration of B12 in the cells, and this would be unfavorable for the necessary binding, and would tend to lower the reaction rate.

What these researchers found is that normally glutathione binds to CblC, and in doing so, it increases the affinity of CblC for B12. And it does so by a whopping amount--over a factor of a hundred!!

Turning this around, if glutathione becomes depleted, as in ME/CFS and autism, the affinity of CblC for B12 is going to drop substantially. I suggest that the glutathione depletion, combined with its major effect on this affinity, is the reason the B12 dosage must be so high in treating ME/CFS and autism.

Best regards, Rich

Biochem Biophys Res Commun. 2011 Aug 26;412(2):360-5. Epub 2011 Jul 29.
Glutathione increases the binding affinity of a bovine B?? trafficking chaperone bCblC for vitamin B??.
Jeong J, Kim J.
School of Biotechnology, Yeungnam University, 214-1 Dae-dong, Gyeongsan-si, Gyeongsangbuk-do 712-749, Republic of Korea.

Intracellular B(12) metabolism involves a B(12) trafficking chaperone CblC that is well conserved in mammals including human. The protein CblC is known to bind cyanocobalamin (CNCbl, vitamin B(12)) inducing the base-off transition and convert it into an intermediate that can be used in enzyme cofactor synthesis. The binding affinity of human CblC for CNCbl was determined to be K(d)=?6-16 ?M, which is relatively low considering sub-micromolar B(12) concentrations (0.03-0.7 ?M) in normal cells. In the current study, we discovered that the base-off transition of CNCbl upon binding to bCblC, a bovine homolog of human CblC, is facilitated in the presence of reduced form of glutathione (GSH). In addition, GSH dramatically increases the binding affinity for CNCbl lowering the K(d) from 27.1 0.2 to 0.24 0.09 ?M. The effect of GSH is due to conformational change of bCblC upon binding with GSH, which was indicated by limited proteolysis and urea- induced equilibrium denaturation of the protein. The results of this study suggest that GSH positively modulates bCblC by increasing the binding affinity for CNCbl, which would enhance functional efficiency of the protein.

Copyright 2011. Published by Elsevier Inc. PMID: 21821010

so there you have it : glutathione helps b12 availability !

how could one believe that GSH depletes B12 ???it just makes no sense.
please post the science or links to studies

thanks
schesche



thanks chris
[/QUOTE]

Interesting theory. Always cautious when someone uses science to disprove someone elses theory, and then starts the conversation with: "it is my opinion that many many cfs symptoms are caused by a limbic system crosswire." No science backing up that statement.

I'll let Fred jump to his own defense, if he feels inclined. But science in it's purest is about testing and observing, the sample size may be minuscule but testing yourself and observing symptoms is scientific at it's heart. Well, at the very least, no less scientific than say trying ashok gupta amygdala retraining and observing whether it works or not.

You state: "i know that trying to measure effects of supplements by waxing and waning symptoms is impossible to do for someone with an illness where symptoms wax and wane all the time regardless of any conceivable factors!!"

Very difficult, impossible possibly, but probably what sets Fred apart from people like myself is his enviable ability to apply systems analysis to symptoms and thus derive conclusions and make adjustments that delve in to what seems to be symptoms that "wax and wane all the time regardless of any conceivable factors" and make sense of them.

If all this over complicates things for your set of symptoms and you've had benefit by simplifying, and not by "stop obsessing about every little detail", then that's fantastic. But many of us here don't obsess over every detail but watch and observe and try to determine what is a relevant symptom and what isn't, which at times means the exact opposite of obsessing over detail, but rather wading through the plethora of symptoms and ignoring much of the noise to get a sense of the bigger picture.

As for glutathione, Fred's view was based on his own observation and construction of a theory as to why he reacted to it. Take it or leave it: he's pretty strong about it as it had a disastrous impact on his healing regardless of what the conventional wisdom is. It's just a theory. Others have different experiences.

Most of what appears on this board is theory. It's the best we have, we do what we can with it.
 
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hey
thanks for picking up the thread.
I am quite strong on amygdala retraining and would recommend you try it and see if it does anything. nothing i have done ever matched the healing achieved by it. And there are actually some small statistical studies showing that of all things people with ME / CFS tried :amygdala retraining or even the lightning process (i don´t care much for phil parkers attitude but nonetheless ) yielded the best results . Annie Hopper cured herself using her method called dynamic neural retraining. These methods overlapp and they do work by using brain neuroplasticity . . So yes it is my opinion and yes it is based on self observation,but as you say self observation could be included into scientific observation .. if anything ever yielded a fantastic and clear result then it was Amygdala Retraining. i doubt it was a placebo . the experience was very clear.

But this post was not about that anyway, i just wanted to show where i was coming from. AMRTR was what had helped me the most and if you have not given it a shot, based on my and many others who recoverd with this easy non invasive technique experience , try it !! everyone with cfs should try it , first of all things.Because of its non invasive character aimed at restoring crosswired brain function. you can do that while working on methylation, infections, diet ( fast tract diet if you have bloating or Paleo/ perfect health diet if you don´t have gut issues!, Gut flora, microbiome, toxins , sleep ) and the psychological side of your life to calm the overacive ( maladaptive ) stress response. i also recommend TRE exercises by dr bercelli . they once stopped a flulike episode dead in its tracks for me after 2 months of non stopp flu type relapse. there is something happening in the Brain/ nervous system in this disease which can also be helped without meds, supps or food.


back to GLUTATHIONE and methb12 :
I came across the deadlock protocoll because of rich v k protocol. and i just miss the clarity of the scientific explanation that Rich used . I wish fredd who has allready dedicated thousands of hours in answering post and explaining things , would be able to streamline it a bit more for people who will engage in it.of course its everybody´s own responsibility but i see people taking sides here and thats not what its about. people were asked to post abut their results using the deadlock PR but they didin´t really use that feature which is a shame as it would help to objectify the method and results.

and in doing so Fredd could put up a scientific hypothesis for things like : Glutahione precursors are messing up B12 utilisation.

its actually just this point which is mentioned many times but its mechanisms are never really explained.
@Fredd could you please explain how you came to this conclusion as i find it is a very important recommendation.
We are trying to raise glutathione by the methylation protocoll, but you say Glutathione ( precursors ) are bad for us.
there is no difference in glutathione raised by methylation supplements or glutathione made from precursors , glutamine glycine and cysteine - reduced gsh is rduced Gsh .. so if I understand you correctly both would be bad as they are the same thing:

where is the logic in it ?? we want to raise it yet it steals our b12 ??

could you have made a faulty observation if it was only based on self observation - eg urine colour or did you read some studies that proved what u observed? how did you reach this conclussion and what are the reasons you recommend we stay of the GSH precursors.

thanks mate keep up the good work
schesche
 
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Valentijn

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And there are actually some small statistical studies showing that of all things people with ME / CFS tried :amygdala retraining or even the lightning process (i don´t care much for phil parkers attitude but nonetheless ) yielded the best results .
That's a rather extraordinary claim. Do you have the citations to the published studies?
 

Sushi

Moderation Resource Albuquerque
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I am quite strong on amygdala retraining and would recommend you try it and see if it does anything. nothing i have done ever matched the healing achieved by it.
Best to continue this discussion on a thread about amygdala retraining so that this thread says focused.
 
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That's a rather extraordinary claim. Do you have the citations to the published studies?
there are some small studies showing LP effectiveness here:

http://lightningprocess.com/research/

i reached 80 percent (from 10 percent and extreme pain) in 3 weeks using amygdala retraining combined with eft and DR sarno´s approach to pain -i relapsed after a death of partner and haven´t been able to get back on the horse since due to workload , money problems and constant flus and my driven personality .

i follow either ashok gupta or annie hopper.. i am quite sure i got more results using this apporach than with supplemens. while one does the retraining , one can still do the methylation protocoll , and fix one´s gut-- my gut is really messing things up. but i feel stop fussing over small symptom fluctuations trying to guess if its folate or donut hole folate insufficiency etc.. is a waste of time..I set a dose of all the supplements , and stay on it. then do the retraining .

also include TRE exercises by dr bercelli , they calm the maladaptive stress response.they are cheap and easy. add breathing and meditation to further calm the brain .---- start noticing the wired feeling in the back of it all...this is the nervous system locked in a vicious cycle--according to ashok, or annie hopper or even LP this is the cause of most sympoms if not all!! I also believe that because that´s how i healed in 2009 ..if you can afford it then contact the people at the optimal health clinic in london, they all had ME and all recovered fully. good luck c
 
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Best to continue this discussion on a thread about amygdala retraining so that this thread says focused.
how does one do that ? could you please open oit..thanks... still no answer from anyone regarding glutathione and b12..i have a gut feeling this is just plain wrong!! actually the only study i could find showed that Glutahtione helped with b12 utilisation.

Biochem Biophys Res Commun. 2011 Aug 26;412(2):360-5. Epub 2011 Jul 29.
Glutathione increases the binding affinity of a bovine B?? trafficking chaperone bCblC for vitamin B??.
Jeong J, Kim J.
School of Biotechnology, Yeungnam University, 214-1 Dae-dong, Gyeongsan-si, Gyeongsangbuk-do 712-749, Republic of Korea.

Intracellular B(12) metabolism involves a B(12) trafficking chaperone CblC that is well conserved in mammals including human. The protein CblC is known to bind cyanocobalamin (CNCbl, vitamin B(12)) inducing the base-off transition and convert it into an intermediate that can be used in enzyme cofactor synthesis. The binding affinity of human CblC for CNCbl was determined to be K(d)=?6-16 ?M, which is relatively low considering sub-micromolar B(12) concentrations (0.03-0.7 ?M) in normal cells. In the current study, we discovered that the base-off transition of CNCbl upon binding to bCblC, a bovine homolog of human CblC, is facilitated in the presence of reduced form of glutathione (GSH). In addition, GSH dramatically increases the binding affinity for CNCbl lowering the K(d) from 27.1 0.2 to 0.24 0.09 ?M. The effect of GSH is due to conformational change of bCblC upon binding with GSH, which was indicated by limited proteolysis and urea- induced equilibrium denaturation of the protein. The results of this study suggest that GSH positively modulates bCblC by increasing the binding affinity for CNCbl, which would enhance functional efficiency of the protein.



and


Processing of glutathionylcobalamin by a bovine B12 trafficking chaperone bCblC involved in intracellular B12 metabolism.
(PMID:24286755)
Jeong J , Park J , Park J , Kim J
School of Biotechnology, Yeungnam University, Gyeongsan-si 712-749, Republic of Korea.

Biochemical and Biophysical Research Communications [2014, 443(1):173-178]
Type: Journal Article, Research Support, Non-U.S. Gov't
DOI: 10.1016/j.bbrc.2013.11.075
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Abstract
Highlight Terms
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Gene Ontology(5) Genes/Proteins(1) Species(1) Chemicals(7)
Glutathionylcobalamin (GSCbl) is a biologically relevant vitamin B12 derivative and contains glutathione as the upper axial ligand thought formation of a cobalt-sulfur bond. GSCbl has been shown to be an effective precursor of enzyme cofactors, however processing of the cobalamin in intracellular B12 metabolism has not been fully elucidated. In this study, we discovered that bCblC, a bovine B12 trafficking chaperone, catalyzes elimination of the glutathione ligand from GSCbl by using the reduced form of glutathione (GSH). Deglutathionylation products are base-off cob(II)alamin and glutathione disulfide, which are generated stoichiometrically to GSH. Although cob(I)alamin was not detected due to its instability, deglutathionylation is likely analogous to dealkylation of alkylcobalamins, which uses the thiolate of GSH for nucleophilic displacement. The catalytic turnover number for the deglutathionylation of GSCbl is ≥1.62±0.13 min(-1), which is, at least, an order of magnitude higher than that for elimination of upper axial ligands from other cobalamins. Considering the prevalence of GSH at millimolar concentrations in cells, our results explain the previous finding that GSCbl is more effective than other cobalamins for synthesis of enzyme cofactors.


@Fredd : it is more effective for synthesis of enzyme cofactors _NOT : it transports cobalamin into the urine !!
 
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