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Neuromuscular damage from B12 deficiency - take action or wait for neurology appt.?

adreno

PR activist
Messages
4,841
Ultimately, we can all keep doing exactly what were doing and stay sick all we want. It sure doesn't hurt Yasko's feelings to thumb our noses at her. Just like it doesn't hurt Freddd or Rich if we ignore their suggestions and think otherwise. For that matter, which of those scientists above would agree with their theories? I think we have to study what we are capable of studying and take a bit of this and a bit of that and couple that with trial and error, unless you have the genes. But if we have the genes and just ignore a decade's worth of research conducted by the only one I've ever heard of who has actually studied this area in the lab along with treating some very sick patients who have them, I think were doing ourselves a horrible injustice. Yet the researchers above are doing it on some preliminary lab data alone. No doubt about it, Dr. Yasko sure doesn't have all the answers but she has come to terms with many of the issues in this area through her own trial and error. My doctor has a saying that used to kind of bug me but I'm growing more found of it. It goes like this "The person who says it can't be done, shouldn't interrupt the one doing it".

Just some food for thought. I also appreciate the food that I've received in return. I think this site is great for revealing all kinds of different experiences, views, and theories that just may save the next generation a lot of misery.

Sincerely,
Angela

I really don't know where your assumptions come from; you talk about hurting feelings and thumbing noses. I simply follow the evidence, and so far I have not been convinced, by what has been presented, that Yasko is right. That is all. There is nothing personal about it.

Of course I want to get better. But you seem to assume that the only way to get better is to follow Yasko's advice. I disagree.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
There is a lot I don't agree with Yasko, or many others, about. However, I also know that results can be right spot on with theories that are pure horsefeathers. I am working more from game theory, information theory, pattern matching (think Watson on Jeopardy). I don't care what the nutritional and biochemical theory is, that turns out to be whatever is neded to explain the results. The whole "new" idea of evidence based medicine might work out if applied to real results rather than just results backing theories that don't match vrey well. So in a genuine evidence based system, the various therapies and results and side effects and all that are compared looking for the patterns that match best and work best. It would ignore the theory. It doesn't matter if her sulfur chemistry appears whacked if her results are good. When I put the active b12 protocol together I looked for what WORKED both in peer reviewed papers, and data mining the internet taking hints from my experience and everything else I already knew. By reading every paper available on b12 I was able to be very clear on what things that were presented as gospel were actually unwarrented assumptions sanctified by being repeated hundreds of times, what things really worked and more clues of where to look.

What I do know is that people basing their ideas on some of the things on Yasko's site have some strange ideas about what the active b12 protocol does do versus what it"should do" based on whatever theories. People on the site also persist in mis-identifying low potassium, paradoxical folate deficiency and induced folate deficiency as "detox". That's true all over the web for now. That will take a while before they catch on to what they are really seeing. After they can elliminate these things then quite a few people who are remaining sick becasue of these mis-indentifications could do better.

As far as I'm concerned, right now I am wanting to get better at identifying these things and then identify the next layer as whatever it turns out to be. I'm interested in solving this whole problem, at a practical level. The project I took on was to heal myself and secondarily to develop a screening system for identifying all these things in other people.

If I were pushing a theory, low potassium wouldn't be recognized and corrected in anybody on any protocol that results in startup of cell formation, healing in other words, but rather just be more "side effects", more "detox" which seems to have turned into a catchall word. The same with both paradoxical folate deficiencies and with the induced folate deficiencies. There is still lots and lots of science to be done figuring out exactly why and how these things happen and what sets of people are afflicted and why. However, we can heal more safely applying this information for the next 30 or 40 years while somebody figures out the "why" of what we are finding here. I know some people are not happy at all with black boxes yet sometimes just knowing the inputs and outputs are very useful to know without knowing the exact details of how it got there. Rich has been extremely helpful in figuring out what very possibly is going on inside these black boxes and fitting that into the theoretical structure.

So, let's keep in sight that what we are ALL doing is healing and tryimg to figure out how to do that better.
 

greenshots

Senior Member
Messages
399
Location
California
I really don't know where your assumptions come from; you talk about hurting feelings and thumbing noses. I simply follow the evidence, and so far I have not been convinced, by what has been presented, that Yasko is right. That is all. There is nothing personal about it.

Of course I want to get better. But you seem to assume that the only way to get better is to follow Yasko's advice. I disagree.

I'm referring to the various quotes by the scientists. I know this isn't personal for you. what makes me sad is how many people are misled by what "experts" have to say when none of the researchers Susan quoted has ever done the kind of wok Yasko does. I also find it odd that she never identified who any of them were. I think that would be interesting.
I don't assume the only way to get better is Yasko, as I've said, I am also here for some short cuts. But I can tell you from personal experience that we aren't alone in seeing miracles with our kid's, there are thousands more, as there are thousands more who have had CFS, ALS, MS, etc., who are now recovered. Might there be a shorter route? yes, I think I have learned that from this site. I've also learned there are two ways to skin the methylation cat, so to speak, so there's no doubt in my mind that there are many roads to Rome. But I do believe that Rome, is methylation. And there isn't anyone else I know of who has used the methylation SNPs at all, let alone so comprehensively, to look at thousands of patients. This is the point I would like to make. You assume these unidentified researchers are correct when they have never even been named and could be everyday people disputing the issue. Yet the one person whose actually done the research is s sham or maybe not worth taking note of and that's a scary thing to me. Scientists have a lot of power, afterall, they've told us that giving our children 44 shots is safe too.

Angela
 

greenshots

Senior Member
Messages
399
Location
California
There is a lot I don't agree with Yasko, or many others, about. However, I also know that results can be right spot on with theories that are pure horsefeathers. I am working more from game theory, information theory, pattern matching (think Watson on Jeopardy). I don't care what the nutritional and biochemical theory is, that turns out to be whatever is neded to explain the results. The whole "new" idea of evidence based medicine might work out if applied to real results rather than just results backing theories that don't match vrey well. So in a genuine evidence based system, the various therapies and results and side effects and all that are compared looking for the patterns that match best and work best. It would ignore the theory. It doesn't matter if her sulfur chemistry appears whacked if her results are good. When I put the active b12 protocol together I looked for what WORKED both in peer reviewed papers, and data mining the internet taking hints from my experience and everything else I already knew. By reading every paper available on b12 I was able to be very clear on what things that were presented as gospel were actually unwarrented assumptions sanctified by being repeated hundreds of times, what things really worked and more clues of where to look.

What I do know is that people basing their ideas on some of the things on Yasko's site have some strange ideas about what the active b12 protocol does do versus what it"should do" based on whatever theories. People on the site also persist in mis-identifying low potassium, paradoxical folate deficiency and induced folate deficiency as "detox". That's true all over the web for now. That will take a while before they catch on to what they are really seeing. After they can elliminate these things then quite a few people who are remaining sick becasue of these mis-indentifications could do better.

As far as I'm concerned, right now I am wanting to get better at identifying these things and then identify the next layer as whatever it turns out to be. I'm interested in solving this whole problem, at a practical level. The project I took on was to heal myself and secondarily to develop a screening system for identifying all these things in other people.

If I were pushing a theory, low potassium wouldn't be recognized and corrected in anybody on any protocol that results in startup of cell formation, healing in other words, but rather just be more "side effects", more "detox" which seems to have turned into a catchall word. The same with both paradoxical folate deficiencies and with the induced folate deficiencies. There is still lots and lots of science to be done figuring out exactly why and how these things happen and what sets of people are afflicted and why. However, we can heal more safely applying this information for the next 30 or 40 years while somebody figures out the "why" of what we are finding here. I know some people are not happy at all with black boxes yet sometimes just knowing the inputs and outputs are very useful to know without knowing the exact details of how it got there. Rich has been extremely helpful in figuring out what very possibly is going on inside these black boxes and fitting that into the theoretical structure.

So, let's keep in sight that what we are ALL doing is healing and tryimg to figure out how to do that better.


"What I do know is that people basing their ideas on some of the things on Yasko's site have some strange ideas about what the active b12 protocol does do versus what it"should do" based on whatever theories. People on the site also persist in mis-identifying low potassium, paradoxical folate deficiency and induced folate deficiency as "detox". That's true all over the web for now. That will take a while before they catch on to what they are really seeing. After they can elliminate these things then quite a few people who are remaining sick becasue of these mis-indentifications could do better."

I couoldn't agree with you more! Why do you think I'm on this site? The trouble with the Yasko group is they seem more like a bunch of cult followers than people who think for themselves. Now this isn't true of all of them for sure but it is for many of them. If you ask a question, the answer almost always comes back to "Because Amy says" even though its longer and more articulate than that. I'm not, and never have been, a follower. I respect her and I thank God for what she's done for my kids and some of the adults in my life but I need to know the "whys & wherefores''.

To be honest, they don't truly understand the active B12s, they just do it cuz Amy says. Same with detox. I know that Dr. Amy understands "detox" doesn't come down to simple symptoms and realizes there's more to it, which is why she wants the UTM/UTEE's done to see electrolytes, etc., and this is why she says "no on NAC & others". But while that group seems to pride itself on understanding complex issues, they only understand pieces of it all and don't seem to do the ground work to see where this all started. This is another reason I like my doctor, she studied nutrigenomics at UC Davis when she didn't know anything about Yasko. While she studies many of Yasko's theories, she'll tell us straight up if something is BS or not and frequently disagrees with Yasko.

I wasn't trying to fit you in a mold of "theorists", Freddd but it's important for people to understand that even while everything isn't in a "prestigious, peer reviewed journal" (?like the Lancet & their lies about Wakefield) that this doesn't invalidate what you've found thru hundreds & hundreds of people. It's not to pigeon hole you or anything. The trouble with Internet communication is that you lose so much with facial expression and body language.

Angela
 

greenshots

Senior Member
Messages
399
Location
California
Hi Angela,

You're correct -- all I'm doing is trying to provide other viewpoints, so people can see that we're all human, we all don't have all the answers -- including the scientists/researchers -- so sometimes it can be "dangerous" (that isn't exactly the right word) to put anyone up on a pedestal and think there is only 'one way' to get out of this mess.

I'm very happy to hear that your son did so well using Yasko's protocol -- truly. But I guess I haven't seen the openness that you have w/her. For example on her forum, I tried to ask why she considers 'sulfate' to be harmful, when none of the other experts do, and all I got was answers that were copied and pasted from her past responses, which -- basically -- didn't answer the question. I tried several times, and just kind of got the run around, like folks were afraid to contradict or question her. I haven't seen her admit that she might be wrong on the CBS issue or especially regarding her claim that sulfate is "toxic". I could never get an answer or explanation on that one.

The same thing happened on the Yahoo yasko forums. No one would answer 'tough' questions, except via backchannel, which was kind of troubling.

I do agree that a lot of researchers can become too latched on to their theories/hypothesis (Cutler and perhaps Owens too), so I'm glad to hear that Yasko has changed her views when necessary. Maybe she'll be doing so again??? :)

I do very much appreciate when Rich makes changes and explains why he has made them. He does disagree somewhat with Yasko when it comes to lowering protein, as it's his conclusion that folks with CFS use or need more protein for fuel. I'm not sure I understand your point about his protocol taking longer to resolve CBS issues -- I think his study w/Dr. Nathan was only 3 months (or 6 months?) -- I can't remember, but that doesn't seem too long. Anyway, Rich's hypothesis is based on Jill James published work as well, some of which also contradicts some of Yasko's conclusions. (She also found that the CBS mutation was an 'adaptive' response, and normalized with mb12 and folinic acid.)

And perhaps I'm misinterpreting your statement above, but I don't think it's fair to suggest if we don't follow Yasko's advice that we will necessarily "stay sick". Certainly what works for some folks doesn't work for others (some have noted that they have the CBS polymorphism and high instead of low homocysteine for example), plus there may be many, many other factors involved besides these genetic expression issues. And there may be other ways to get around them as well.

Anyway, just my two cents -- my 'food for thought'. :)

Wishing everyone the best! :)

Dan

I sure know what you mean about the Yasko site regurgitating her older posts and not even answering the questions, if you see my response to Freddd, you'll see I've had the same experience and find it highly frustrating.

As for the comment about Rich's work, I don't know how long it took either but I was at the Boston conference ( I finally got my doc to attend to question Amy in the doctor's session about several isssues) and listened to his lecture. He seemed to be saying that where Amy was right about the CBS draining too much, it might compensate somehow later on only it took longer to see the results of SAM & I think SAH to come up again which we take to mean that the pathway is working again (James) but I don't understand all the biochemistry otherwise. I asked my doctor once and she explained it to me like this since they all seem to measure ertain things in that cycle and SAM and possibly SAH are the ones.

No, I certainly don't feel anyone should be sick or are sick only because they don't follow Yasko. I think there are many roads but I think for the overwhelming majority, if you get methylation up and running, the body will heal itself. Does this mean someone who has done so won't still be sick at all? I sincerely doubt that. I think chronic virus is an issue, bacteria, possibly metals, and others but I felt it was important to mention that just because something isn't in a double blind placebo controlled study doesn't mean the data collected on hundreds or in her case, thousands of patients is worthless. if that were the case, none of Freddd's data would matter and I don't believe that at all. There is much to be said for what they call "empirical data" as well.

I have seen that talking to either side about this is full of pitfalls and taking more time than I should be spending on it so I'll quell my experiences and observations and stick to learning from what you have all gleaned from things and see what I come up with for myself in the end.

Thanks for the information, unlike the other site, I do question authority :)
Angela
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I sure know what you mean about the Yasko site regurgitating her older posts and not even answering the questions, if you see my response to Freddd, you'll see I've had the same experience and find it highly frustrating.

As for the comment about Rich's work, I don't know how long it took either but I was at the Boston conference ( I finally got my doc to attend to question Amy in the doctor's session about several isssues) and listened to his lecture. He seemed to be saying that where Amy was right about the CBS draining too much, it might compensate somehow later on only it took longer to see the results of SAM & I think SAH to come up again which we take to mean that the pathway is working again (James) but I don't understand all the biochemistry otherwise. I asked my doctor once and she explained it to me like this since they all seem to measure ertain things in that cycle and SAM and possibly SAH are the ones.

No, I certainly don't feel anyone should be sick or are sick only because they don't follow Yasko. I think there are many roads but I think for the overwhelming majority, if you get methylation up and running, the body will heal itself. Does this mean someone who has done so won't still be sick at all? I sincerely doubt that. I think chronic virus is an issue, bacteria, possibly metals, and others but I felt it was important to mention that just because something isn't in a double blind placebo controlled study doesn't mean the data collected on hundreds or in her case, thousands of patients is worthless. if that were the case, none of Freddd's data would matter and I don't believe that at all. There is much to be said for what they call "empirical data" as well.

I have seen that talking to either side about this is full of pitfalls and taking more time than I should be spending on it so I'll quell my experiences and observations and stick to learning from what you have all gleaned from things and see what I come up with for myself in the end.

Thanks for the information, unlike the other site, I do question authority :)
Angela

Hi Angela,

I do question authority :)

So do I. It's gotten me in trouble all my life. I'm only healthy now because I questioned authority over and over, deeper and deeper.

important to mention that just because something isn't in a double blind placebo controlled study doesn't mean the data collected on hundreds or in her case, thousands of patients is worthless. if that were the case, none of Freddd's data would matter and I don't believe that at all. There is much to be said for what they call "empirical data" as well.

I've spend my life working with empirical data, from mortality and morbidity tables (yes Virginia, they really used to use piles of printed on paper tabular information) to claims data and projecting next years claims expenses and how payment systems affect what health care providers provide. I'm perfectly satisfied to say "we can lower health care expenses XX% on these specific classes of people by ...". I know that the way these costs come down is that they are healthier and don't need all those medications and services. In the process I know that symptoms come down and many disappear.

Antibiotics were very useful decades before they understood the biochemistry. A lot of peer reviewd research is so riddled with errors the writeups wouldn't pass high school chem lab. That has noting to do even with the research assumptions and questions. I'm just soeaking of matching the data table to the graphs, make sure time based data isn't scrambled, make sure that the simple math is correct, we all know that 13+.4 = 17, don't we.
 

greenshots

Senior Member
Messages
399
Location
California
I couldn't agree more Freddd & this is the reason "Evidenced Based medicine" needs to include empirical data as well. I'd hate to think we'd all have to give ourselve something as awful as an ulcer, as the physicians who figured out that H. Pylori bacteria causes them, did just to finally "prove" to the medical establishment that it was so. My doctor often tells a funny story that I'll probably mess up but I think its very telling of the times. We all think that we have the best, most advanced medicine, at least, until you get an illness outside the box. But 50-100 years from now, they'll all be laughing about the wild notions we have about disease.

When President Lincoln was shot, the "cutting edge" medicine of the time was that when someone had a digital rectal exam, their heart rate went up. So unrecounted in history is a little known fact that the doctors of Lincoln's time subjected the dying president to repeated rectal exams in hopes of saving his life since of course, as he bled out, his heart rate was falling. While this is actually true (don't try this at home!) you can see why it might actually speed up your death also. Since you are bleeding out, an increased heart rate speeds up blood loss too. However, they felt they were giving him the best, if not only, care that they could provide to their fallen leader.

It doesn't seem much different today. They all chase their tails trying to put a bandage on the symptoms, never getting to the root causes. And while some of the treatments might seem plausible, just as Lincoln's rectal exams once did, they aren't any more successful in the end. I love it when she tells this story because it really does point out the current ignorance, no matter how "advanced" it is.

Thanks Freddd & Rich for collecting the empirical data, we desperately need it!

Angela
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
Freddd,

These are also symptoms of too much sulfur for people who can't process it some possibly due to the CBS, NOS issues. I'm pulling far back in my memory sio hope I got that right. Molybdenum sometimes helps. so what could be a paradoxical folate issue could instead or also be a sulfur issue.

Robin

As for reactions to NAC & Glutathione I would think that would be easy...
headaches, fatigue, more brain fog, irritability, lethargy


As these are identical to a subset of the induced folate/b12 defieincies from Glutathione and NAC, are there any distinguishing symptoms that are not included in the folate/b12 deficiency set?
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
Yasko is big on addressing high glutamates and high ammonia levels before starting methylation. My glutamates have been sky high and ammonia as well. I don't know what they are right now. Again, if remembering correctly she does believe you will have a harder time with "detox" or detox if these two are high and they give enough problems on their own.

I have a CBS upregulation but have to take B6 which she warns against for those with CBS snp issues. I also have KPU and am low in B6 so supplement. B6 seeminlgy has influence on the methylation cycle "trap door" where the co factors can all fall out so to speak and create ammonia and sulfur as by products. I hope Angela or someone will correct me if I am wrong.

She also is concerned as is Rich with pushng methylation so hard with too much supplementation that is bascially collapses.

I think Yasko is in favor of high b12 supplementation for those of us with MTR and MTRR snp issues. Its the form you disagree on and that only in regard to the COMT snp.. if +- or ++ then she warns against too many methyl groups collecting and the effects of that. I am COMT ++,++ but crave the Mb12. no desire at all for the Hb12.

She also like low dose TMG in the beginning but wants to switch that over to DMG once methylation is going well. Rich has explained that.. I dont understand but have taken that to mind to consider.

She is all about tweaking and treating the methylation cycle delicately, but with precision as per her testing and results she has seen over the years.

She only goes to about 300mcg metafolin.. I would love to be able to compare you, Rich, Yasko and Neubrander and put this all together. I am thinking genetically speaking we really know so little and basing decisions on that with patterns is still an experimentation.

http://www.dramyyasko.com/our-unique-approach/methylation-cycle/

there is a ton of info on her board which I think is linked to from site above. I would love for you to read and report back your thoughts if you have not already and I have missed that in all of these hundreds of pages of posts.

Robin

Hi Angela,

So msg/glutamate excitatory response would also be what at least used to be called Chinese Restaurant Syndrome?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Yasko is big on addressing high glutamates and high ammonia levels before starting methylation. My glutamates have been sky high and ammonia as well. I don't know what they are right now. Again, if remembering correctly she does believe you will have a harder time with "detox" or detox if these two are high and they give enough problems on their own.

I have a CBS upregulation but have to take B6 which she warns against for those with CBS snp issues. I also have KPU and am low in B6 so supplement. B6 seeminlgy has influence on the methylation cycle "trap door" where the co factors can all fall out so to speak and create ammonia and sulfur as by products. I hope Angela or someone will correct me if I am wrong.

She also is concerned as is Rich with pushng methylation so hard with too much supplementation that is bascially collapses.

I think Yasko is in favor of high b12 supplementation for those of us with MTR and MTRR snp issues. Its the form you disagree on and that only in regard to the COMT snp.. if +- or ++ then she warns against too many methyl groups collecting and the effects of that. I am COMT ++,++ but crave the Mb12. no desire at all for the Hb12.

She also like low dose TMG in the beginning but wants to switch that over to DMG once methylation is going well. Rich has explained that.. I dont understand but have taken that to mind to consider.

She is all about tweaking and treating the methylation cycle delicately, but with precision as per her testing and results she has seen over the years.

She only goes to about 300mcg metafolin.. I would love to be able to compare you, Rich, Yasko and Neubrander and put this all together. I am thinking genetically speaking we really know so little and basing decisions on that with patterns is still an experimentation.

http://www.dramyyasko.com/our-unique-approach/methylation-cycle/

there is a ton of info on her board which I think is linked to from site above. I would love for you to read and report back your thoughts if you have not already and I have missed that in all of these hundreds of pages of posts.

Robin

Hi Robin,

I have no idea of Yasko's theories, but she beleives that low potassium and paradoxical folate deficiency is detox so I give her theories zero credibility where ever it disagrees with my experience. I believe that the methylation cycle is 10% of it all, a chunk, but only a small part. I also know it starts solidly in a day and causes LOW POTSSIUM, not "detox" which is what her theory needs.

I also know that folic and folinic acid can cause paradoxical folate deficiency, not "DETOX" that her theory needs. I also know that glutathione, NAC and whey casue induced folate and b12 deficiencies, not "DETOX". As a reverse of GIGO consider this GOGI, Garbage Out, Garbage In.
 

greenshots

Senior Member
Messages
399
Location
California
Hi Robin,

I have no idea of Yasko's theories, but she beleives that low potassium and paradoxical folate deficiency is detox so I give her theories zero credibility where ever it disagrees with my experience. I believe that the methylation cycle is 10% of it all, a chunk, but only a small part. I also know it starts solidly in a day and causes LOW POTSSIUM, not "detox" which is what her theory needs.

I also know that folic and folinic acid can cause paradoxical folate deficiency, not "DETOX" that her theory needs. I also know that glutathione, NAXC and whey casue induced folate and b12 deficiencies, not "DETOX". As a reverse of GIGO consider this GOGI, Garbage Out, Garbage In.

Actually she does understand about the low potassium and this is the reason she liks having the UTEE testing done. Just because some of the people who follow her don't get it, doesn't mean she doesn't. There are so many difficult concepts for people to learn in her program that she doesn't explain each and every fall out individually but I have discussed this with her in the past. This is the reason she does stress this testing and suggests watching electrolytes closely. And to be honest, in almost 10 years of doing this, I've never heard of anyone having a hypokalemic crisis with her protocol, probably because of this issue.

As for the NAC, glutathione, etc, she is concerned about the sulfur issue with those who have the CBS & NOS defects. I just wonder about the people who have this paradoxical folate deficiecy from these supplements and I'll bet dollars to donuts that they all have these defects and that you won't see this reaction much in those who don't.

She's also right there with you on folic acid and folinic and doesn't want anyone using much of these at all. She feels folinic can shut down the SHMT too much and shift away from making DNA & RNA so she actually stresses nucleotides and 5 mthf. But she is about balance and this is the reason you'll see folate 7.5-15 as opposed to 400 dosing in her supplements. I think we get so much from food that we don't need any added folate at all but that's just me :)

I think the problem really comes in from people who think they understand her theories but have no real understanding of the why's behind them. I found the same in nursing as we had nurses who were empty headed automatons who just did what "the doctor said" and then you had the specialized nurses (ER, ICU, Burn unit) who tended to think for themselves and questioned or outright defied orders because they were dangerous for the patients. Robin seems to understand the tenets of her program just fine but if you dig deeper for answers, you'll find that you and Yasko have a lot more in common than you think, Freddd. You just don't talk the same language.

Robin, you may crave the methyl B 12 if you have a VDR - /- or -/+ defect as VDR and COMT seem to drive this need.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Actually she does understand about the low potassium and this is the reason she liks having the UTEE testing done. Just because some of the people who follow her don't get it, doesn't mean she doesn't. There are so many difficult concepts for people to learn in her program that she doesn't explain each and every fall out individually but I have discussed this with her in the past. This is the reason she does stress this testing and suggests watching electrolytes closely. And to be honest, in almost 10 years of doing this, I've never heard of anyone having a hypokalemic crisis with her protocol, probably because of this issue.

As for the NAC, glutathione, etc, she is concerned about the sulfur issue with those who have the CBS & NOS defects. I just wonder about the people who have this paradoxical folate deficiecy from these supplements and I'll bet dollars to donuts that they all have these defects and that you won't see this reaction much in those who don't.

She's also right there with you on folic acid and folinic and doesn't want anyone using much of these at all. She feels folinic can shut down the SHMT too much and shift away from making DNA & RNA so she actually stresses nucleotides and 5 mthf. But she is about balance and this is the reason you'll see folate 7.5-15 as opposed to 400 dosing in her supplements. I think we get so much from food that we don't need any added folate at all but that's just me :)

I think the problem really comes in from people who think they understand her theories but have no real understanding of the why's behind them. I found the same in nursing as we had nurses who were empty headed automatons who just did what "the doctor said" and then you had the specialized nurses (ER, ICU, Burn unit) who tended to think for themselves and questioned or outright defied orders because they were dangerous for the patients. Robin seems to understand the tenets of her program just fine but if you dig deeper for answers, you'll find that you and Yasko have a lot more in common than you think, Freddd. You just don't talk the same language.

Robin, you may crave the methyl B 12 if you have a VDR - /- or -/+ defect as VDR and COMT seem to drive this need.


Hi Robin,

you'll find that you and Yasko have a lot more in common than you think, Freddd. You just don't talk the same language.

And that is so often a large chunk of the problem, not communicating.

Ok, so she is aware of the potassium situation and a problem with NAC/glutathione even if not seeing it as paradoxical folate deficiency, which itself appears to cover at least 3 varieties and then induced folate deficiency another few varieties. Good. Results matter much more than the labels we put on things. The results can be good despite having theories that look whacked, in any direction.

I think we get so much from food that we don't need any added folate at all but that's just me :)

I used to think that too until I found that vegetable folate actually blocks my folate usage. That was a shock since I though I was eating well.
 

greenshots

Senior Member
Messages
399
Location
California
Hi Robin,

you'll find that you and Yasko have a lot more in common than you think, Freddd. You just don't talk the same language.

And that is so often a large chunk of the problem, not communicating.

Ok, so she is aware of the potassium situation and a problem with NAC/glutathione even if not seeing it as paradoxical folate deficiency, which itself appears to cover at least 3 varieties and then induced folate deficiency another few varieties. Good. Results matter much more than the labels we put on things. The results can be good despite having theories that look whacked, in any direction.

I think we get so much from food that we don't need any added folate at all but that's just me :)

I used to think that too until I found that vegetable folate actually blocks my folate usage. That was a shock since I though I was eating well.

I'm talking about plain folate. I don't think ANY plain folate should be in ANY supplement since its jam packed in processed food and fruits/veggies so that if any folate is added, it should be the active version only.

What do you base the 10% theory on? That methylation is only a small fraction of the issues in chronic disease?

Angela
 

Pea

Senior Member
Messages
124
Angela, what is the danger of too much methylfolate? There seems to be quite a difference in the recommended amounts.

Fredd (or anybody) - can we talk tonsils again? I started looking into polio re: my friend since he seems to have what they call "bulbar polio" and they mention tonsils. Remember he said last summer his tonsils had white spots on them (but were dismissed by dr. as "those are just your tastebuds") and you mentioned something about yours.

Now wondering if he caught some kind of virus or parasite back then or earlier. Could it have been festering in his body all these years? Maybe this explains his mucousy head at times, some kind of auto-immune reaction, and not celiac or gluten ?

He did ask to be tested for Lyme disease since he had the symptoms except for the rash; not tested, of course... Then years back we were in Mexico and he got terribly ill for 2 days, bad chills & muscle aches (and he rarely gets a cold or the flu). Dengue fever was going around there then, but again he didn't have a rash.

Any insights?
 

greenshots

Senior Member
Messages
399
Location
California
Angela, what is the danger of too much methylfolate? There seems to be quite a difference in the recommended amounts.

Fredd (or anybody) - can we talk tonsils again? I started looking into polio re: my friend since he seems to have what they call "bulbar polio" and they mention tonsils. Remember he said last summer his tonsils had white spots on them (but were dismissed by dr. as "those are just your tastebuds") and you mentioned something about yours.

Now wondering if he caught some kind of virus or parasite back then or earlier. Could it have been festering in his body all these years? Maybe this explains his mucousy head at times, some kind of auto-immune reaction, and not celiac or gluten ?

He did ask to be tested for Lyme disease since he had the symptoms except for the rash; not tested, of course... Then years back we were in Mexico and he got terribly ill for 2 days, bad chills & muscle aches (and he rarely gets a cold or the flu). Dengue fever was going around there then, but again he didn't have a rash.

Any insights?

many of us feel that using high dose methyl groups overrides the methylation pathway whereas lower doses that cover several areas blanket the system in a more balanced way, much as your body naturally does.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I'm talking about plain folate. I don't think ANY plain folate should be in ANY supplement since its jam packed in processed food and fruits/veggies so that if any folate is added, it should be the active version only.

What do you base the 10% theory on? That methylation is only a small fraction of the issues in chronic disease?

Angela

Hi Angela,

While the methylation has everything to do with cell formation, which can affect any and all tissues in the body, and some people claim that it is the only thin mb12 does, that is not true. Adb12 has nothing to do with methylation. It appears to do at least 2 things, sit in mitochondria and aid in genberating ATP and perhaps at the same time processing fats for use in myelin and who knows what else as this is new. It is also assoicated with forming more neurological tissue along with l-cartnitine and mb12 which is needed for cell formation via methylation. It is involved directily with the operation of the nerves, separate from DNA transactions, all of which also include methylfolate. People have reported hallucinations stopping in hours with adb12 and mb12. I had multi sensory hallucinations whcih did stop, but over a period of months. Sensory changes from literal brightening of vision and clearing of hearing and return of taste and olfactory senses are more of the neurological functions along with generation of neurotransmitters. None of these are making cells. I had a huge decrease in neurological pain over a 9 month period. The FMS specific type pains took more like 3 years to end and required mb12,adb12 and l-carnitine fumarate. Some toxins like cyanide, gltathione and nitrous oxide it detoxifies by combining with them to cyanocbl or nitrocbl or glutathionylcbl rather than donating a methyl group. That is also how it controls NO related inflammation, by coupling it to the cobalamin. I'm not sure what it does with tetanus toxin or botulism toxin. I'm not sure how it protects against glutatmate toxicity but it does.

The traditional markers for b12 deficiency are partially based on methylation, ie the blood cell abnormalities that occur with mb12 and/or methylfolate deficiencies, and elevated HCY, also mb12 and/or methylfolate and/or p5p. On the other hand other markers are non-methlation, ie MMA, demyelination which invloves at least 2 kinds of action, fat processing and cell formation. The burning red tongue is methylation failure in failing to make cells accurately and fast enough, along with abnormal cells of the cervix, canker sores, cheilitis. Many of the nervous system function don't involve cell making and some do. So it is a really mixed bag. And maybe it is 20 or 30 %. There are probably more neurological malfuctions by description than any other single category and only some of those are methylation. Who knows. There is a mix and that is what matters, not what percentage it actually turns out to be 100 years from now which none of us will live to see most likely.


The neurological chracteristics are the ones that research indicates are MOST reliant upon mb12 and that mb12 has neurological effects unmatched by any other kind.
 

greenshots

Senior Member
Messages
399
Location
California
Hi Angela,

While the methylation has everything to do with cell formation, which can affect any and all tissues in the body, and some people claim that it is the only thin mb12 does, that is not true. Adb12 has nothing to do with methylation. It appears to do at least 2 things, sit in mitochondria and aid in genberating ATP and perhaps at the same time processing fats for use in myelin and who knows what else as this is new. It is also assoicated with forming more neurological tissue along with l-cartnitine and mb12 which is needed for cell formation via methylation. It is involved directily with the operation of the nerves, separate from DNA transactions, all of which also include methylfolate. People have reported hallucinations stopping in hours with adb12 and mb12. I had multi sensory hallucinations whcih did stop, but over a period of months. Sensory changes from literal brightening of vision and clearing of hearing and return of taste and olfactory senses are more of the neurological functions along with generation of neurotransmitters. None of these are making cells. I had a huge decrease in neurological pain over a 9 month period. The FMS specific type pains took more like 3 years to end and required mb12,adb12 and l-carnitine fumarate. Some toxins like cyanide, gltathione and nitrous oxide it detoxifies by combining with them to cyanocbl or nitrocbl or glutathionylcbl rather than donating a methyl group. That is also how it controls NO related inflammation, by coupling it to the cobalamin. I'm not sure what it does with tetanus toxin or botulism toxin. I'm not sure how it protects against glutatmate toxicity but it does.

The traditional markers for b12 deficiency are partially based on methylation, ie the blood cell abnormalities that occur with mb12 and/or methylfolate deficiencies, and elevated HCY, also mb12 and/or methylfolate and/or p5p. On the other hand other markers are non-methlation, ie MMA, demyelination which invloves at least 2 kinds of action, fat processing and cell formation. The burning red tongue is methylation failure in failing to make cells accurately and fast enough, along with abnormal cells of the cervix, canker sores, cheilitis. Many of the nervous system function don't involve cell making and some do. So it is a really mixed bag. And maybe it is 20 or 30 %. There are probably more neurological malfuctions by description than any other single category and only some of those are methylation. Who knows. There is a mix and that is what matters, not what percentage it actually turns out to be 100 years from now which none of us will live to see most likely.


The neurological chracteristics are the ones that research indicates are MOST reliant upon mb12 and that mb12 has neurological effects unmatched by any other kind.

You, know you sound more & more like Yasko than I would have EVER initially guessed! WOW! Did you know that she took much of Dr. James & Dr. Deth's findings and expanded on them by adding in the urea cycle, Kreb's Cycle, & BH4 Cycle? She would definitely support your finding that methylation isn't all that either, although I can't say how much importance she places on those two cycles (Folate & Methionine) since everyone who "follows" her tends to refer to all of these cycles as the methylation pathway. They don't seem to know that only the Folate & Methionine are the real methylation pathway but like you said in an earlier post, sometimes the results are more important than the labels. Yasko is also VERY leery about glutathione and NAC when every body and their brother seem to advocate it in CFS/ME, Autism, etc. Also, if you've ever heard her talks, she doesn't say not to take sulfur ever, she just says to be cautious if you have certain defects (BHMT & CBS combo and/or SUOX) since these can lead to more sulfur in a toxic form, sulfites. Once those areas are accounted for, she actually supports the use of sulfur products. And I think we had my son on glutathione with the DAN! doc we had back when we started Yasko and she was adamant about NOT being on glutathione cuz it actually depleted methyl B12 in that MTR region. When we had my son's defects supported & he was on a ton of B-12 as well as the 5 MTHF, we started it back up along with NADH (something about oxidation and glutathione there without having NADH but can't remember it all now). She also recommends the Carnitine fumarate for most people rather than the other types. I think the acetyl carnitine was too expensive as well as it causing some problems with acetylcholine. Anyhow, the more your theories come out, even though they don't always call things the same thing, they are uncanny in how similar they are! Have you ever considered that while paradoxical folate is a real issue, that some of the other problems associated with the various supplements (NAC, Glutathione) may account for the varied symptoms people have to these treatments? I mean, you have to figure that its all the more confusing when so many people have such different problems associated with certain supplements so you refer to just about every reaction as "paradoxical folate deficiency" just as others refer to them as "detox", or others say its the "toxic ammonia" or "toxic sulfites" or any number of things.

What about if we had several categories of complications with each issue and for some its most certainly the paradoxical folate issue while for others, they have milder symptoms of that but react stronger to the sulfur or ammonia? I'm just thinking aloud here, not trying to say your theories aren't true. It just reminds me of how stuck on the urea Cycle that Dr. Martin Pall seems to be and I read an article where he seemed to pooh pooh Dr. Vank's ideas (and which would also apply to yours & yasko's and Cutler's and just about everyone elses) but what if everyone accepted that yes, their theory is very applicable but that each issue has several different problems and that's what accounts for such variability. Especially when you throw common gene defects into the picture. For example, Dr. Vank mentioned to me on this site that the most common gene defect listed by PWC on this site a few years ago was the ACE defect. Well, it turns out that this one especially (according to Yasko) means that anyone with the BHMT, SUOX, or CBS (the CBS & BHMT being common defects too) will usually have more toxic sulfites & will be more likely to trigger the fight or flight response by amping up the glutamate receptors (I think the NMDA ones specifically) as well as adrenalin (I think its norepi rather than epi) so that the road to adrenal fatigue and electrolyte imbalance are almost certain. This would explain a lot about the very severe hypokalemic crises in some as well as the POTS symptoms when they start up the methyl B12 and methylfolate whereas others without these issues might only have mildly low potassiums or fatigue/lethargy.

I just wonder if we blended everyone's specialty together, would we come up with more explanations for the extreme variations in so many with PWC or even neurological disorders like MS, ALS, or autism. But it would mean that those who are stuck to their theories like glue such as Cutler/Owens, Pall or even James (despite Dr. James theories not panning out so well in her last study) would have to accept that being right about their own area of intense study doesn't mean everyone else is wrong. They'd need to see that others have found things because they wanted to see more rather than lumping (so tempting by making things simpler). It seems to me that you've come up with alotta information and data over the years that could be put to very good use and help sort out the complexity and variation as could Dr. Vank, Yasko, Pall, James, Waring, Cutler, and many more that I couldn't even name. What if we didn't lump each person's findings into their neat little box of "cause & effect" and pieced it out, looking at the genes, the co-infections and diseases, age, sex, and so on and had a decision tree from that? That seems like a dream come true so I realize it isn't likely. But it sure is something to think about.

Take a look at these diagrams on my doctor's site of the "methylation pathway", although she refers to this as the "Methylation community", I think to make the distinction that they're not all one but I'm not sure. It could also be to avoid copying Yasko's work so much. But as you see, there are the many roads to Rome as you suggest rather than it being all methylation or all NO/ONOO, or all mitochondrial or whatever. I think you'll find that you have more in common with Yasko than you don't. Especially now that your seeing she isn't misled about things like the potassium issue just because so many of her "followers" blindly refer to it as "detox".

http://autismnti.com/images/Technical_Methylation_12-6-11.pdf

http://autismnti.com/images/Website-_Yasko_Education.pdf

http://autismnti.com/yourbodyschemistry.html

Angela
 

rydra_wong

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514
Oops, the cysteine comment was based on another post so I'm scrambling things. I guess overall, I didn't do too badly though. Interesting about NAC though since I had no idea about all of those complications! I planned on taking a sprinkle for my upcoming methylation plan in March so I suppose I will hold off on that since my brain has enough holes in it already!

Don't worry Rydra, I copy & paste things like that or I would still be typing it up. I never did learn to type well. I agree that Yasko isn't the holy grail and I tailor certain things to my intuition as well as my genes. Although to be honest, I don't know that you'd always be aware that it's too much ammonia or sulfur causing certain problems. For instance, your BP will go up with too much waste pumping into the system so all it takes is some high sulfur & ammonia donors along with maybe too much broccoli and cauliflower that week to hit a nice spike in your pressures or some extra chest pressure, fatigue, etc. This is because there's not enough BH4 to clean up what's there, let alone, clean up extra. Then it has to try and make NO to keep your blood vessels open and clean. Needless to say, we don't all get headaches or tremors, there are plenty of lovely symptoms to go around for all of us. I don't think she says not to take any but she does caution people about too much for those reasons. Honestly, it's hard enough though to keep track of the actual illness & then we have all the treatments, their side effects, and then stuff like the folate deficiency. I wonder how you can weed out a zinc deficiency from folate deficiency since they are so similar from the angular cheilitis, diarrhea, rashes, fatigue, and so on? It's a nightmare keeping it all straight to be sure!

Greenshots, remember I have 18 defects out of 30 so I cant speak for ANYONE else but I do not have ANY ammonia issues. I had two serum ammonia tests run - one eating 40 g of protein which is a fairly typical day fr me and another eatinng 80g protein...I did not have elevated ammonia in either case and I was taking a daily broccoli and cruciferous supplement, plus eating a daily egg, plus taking milk thistle - all containing sulfur.

I think well of Yasko. She is the pioreer or the method, but it does not mean we cant improve it for ourselves. I had no intention of eating charcoal (a carcinogen) and yucca (abraids your innards) so I tested my ammonia - voila - no problem. Also, Dolo has 12 of the same genes as me, including the critical ones like CBS and those in the methyl cycle (I think she was missing the diabetes/high bp genes I have) and she ran that sulfite/sulfate test -- no problem. I have never noticed any problem with sulfur - my system seems to crave it. I thought about running the test but it costs more than I thought it was worth since I don't think it is a likely problem for me...I am always wanting to put my money toward the study most likely to pay off for me, you know?

But Yasko is the pioneer and despite that I do not take the supplements she recommends, I listen to her as she
helps me understand so that I can tweak.
Rydra
 

rydra_wong

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Messages
514
Hi Greeshots,


Honestly, it's hard enough though to keep track of the actual illness & then we have all the treatments, their side effects, and then stuff like the folate deficiency. I wonder how you can weed out a zinc deficiency from folate deficiency since they are so similar from the angular cheilitis, diarrhea, rashes, fatigue, and so on?


Somewhere about a year in I tried more zinc. I had been taking 15mg a day. It caused a LOT of startup and I titrated up to 65mg total. I cover zinc at the 50mg level as part of the basics because way too many people have some degree of deficiency. I try to elliminate it up front before it is an issue and so it can't be causing any such symptoms.

That is why the basics. If a person takes 1 at a time looking for the next overt deficiency they will be years and years getting up to a basic level where they can heal 2 weeks in a row. I compare that approach to trying to hunt an elephant with a BB gun.

Again I am not typical of anyone, but I warn people to be careful about taking too much zinc. Zinc prevents absorption / assimilation of copper. BOTH copper and zinc are needed in the methyl cycle as enzyme cofactors. Too little copper causes neuropathy (witness the class action lawsuit against a denture cream company with zinc
in their denture cream that caused neuropathy in many oldsters recently). Just because Freddd seemed to need a high amount of zinc AT THAT TIME does not mean he will as he grows older or that you will. The literature is suggestive of men needing more zinc than women. The literature is suggestive of older people (as their hormones wind down) being deficient in copper (estrogen is known to increase the half life of copper, for instance). Copper is required for cross linking of collagen (lysl oxidase) and w/o that you have very weak blood vessels prone to aneurism. That said, it is not certain how to know what your copper levels are because copper is an acute phase reactant (meaning the blood steals it from tissues where it is needed in the event of all kinds of things, from use of laxatives and OTC medications, to infection, inflammation, etc) so to make the serum level of copper MEANINGLESS. Some claim it can be accurately detected by a hair analysis through a lab that does not wash the hair sample. Dunno. I do know at 45 years of age hair analysis said I was not low in copper, but after menopuase at 50, hair analysis said I was low on copper. I am female. Men lose their hormones later and also zinc is required to prevent testosterone from turning into estrogen so THEY MAY BE DIFFERENT. Just because Freddd gets away with taking a HIGH amount of zinc, does not mean that you will. There is a study showing what ratio of zinc:copper:calcium:manganese would increase bone mass (use search string Cambridge Lowe copper) and in it, they found this would increase bone mass: 15:5:1000:2.5. The ONLY think unusual about this is the high amount of copper per zinc. If you are of an age to be losing bone mass, think twice about taking so much zinc. I dont have answers, only concerns. Think. That's all.
 

rydra_wong

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Messages
514
Somewhere in this thread it seems I read something like that one of the driving forces in taking so much folate is preventing angular chielitis. I just thought I'd repost here what I reported in some other thread -- I got angular chielitis for the first and only time in my life when I ran out of Vitamin E, E, E. I take 1g/day of E, have done so all my life (well since age 20). Ran out - got anular chielitis. I have been on an inactive B100 my whole life until recently Thorne Basic B2x/day...never had angular chieltis. I have the gene that causes me to need more mfolate. I only take 800mcg mfolate. I am indeed affected by the massive mfloate dose as I tried it once, but I found it made me feel symptoms of imbalance of B's (I needed more mB12, maybe more P5p and/or TMG, and could not get the balance right) and electrolyte imbalance. It was very problematic. It did temporarily clear up my head but it was an unstable place for me. I find my head is plenty clear with my own lower dose but cover-all-the-bases protocol (I mean that I take TMG and I take an extra 50mg p5p than most of you seem to, and these both help keep homocysteine down). Yes, I do tend to depression issues with the folate mutation, but if I keep to my protocol I am often free of it. It is not a quick fix. Sometimes TMG can be a quick fix but it can be nauseating. I do not think extra TMG w/o sufficient P5P can really fix anything longterm - relying on TMG in that way has caused cerebral edema in some. I am sensitive to various chemicals which derail my strategy. Also my strategy sucks because it involves so many pills I am frequently nauseous. But in the absence of chemicals (like flea poisons or MSG) it works over time (like not the same day but in a few days like 3 or 5). I do not feel unstable on this protocol. I DO feel unstable on high dose mfolate...like I couldn't go off to work away from my at-home 'drugstore' of a bazillion supplements to take to stabilize me.

The leafy greens btw, contain cadmium, which prevents absorption of copper (required for methionine synthase). This is THE REASON that smokers become hyperthyroid over time (See www.ithyroid.com) as smoke gets the cadmium from leafy greens. So, I am not so sure that there is a problem with any form of folate in greens vs. with the CADMIUM in those greens. You might find if you look up sources of cadmium that avoiding them does as well! I seem to remember reading from one of you avoiding food folates that some foods (like walnuts?) containing folates do not bother you. I just doubt it's the folate, in whatever form, in plant material that is doing it. Cadmium is a known poison on the other hand.