B-12 - The Hidden Story

[whodathunkit]

I think it's a terribly horribly unkind thing to say that someone is not as sick as you. *How on earth* can anyone here say that? How many people on this board have been hurt and angered by others who don't have CFS saying CFS sufferers are just lazy or it's all in their heads? None of us have any way of knowing how sick anyone else on this board is. Freddd helped so many people on this board or tried to help by sharing is knowledge and experiments that I think there isn't really any doubt that he was a very sick guy.

Further, it's none of anyone else's business what our genetic data is. Posting on this board does not entitle anyone to get a look at anyone else's medical history. Those who want to share their genetic data, do. But no one is *entitled* to see Freddd's snps (or anyone else's for that matter), and Freddd is in no way bound to share his medical history or genetic data (nor is anyone else).

 

[drob31]

Further, it's none of anyone else's business what our genetic data is. Posting on this board does not entitle anyone to get a look at anyone else's medical history. Those who want to share their genetic data, do. But no one is *entitled* to see Freddd's snps (or anyone else's for that matter), and Freddd is in no way bound to share his medical history or genetic data (nor is anyone else).

You're right, no one is entitled to anything. However, I think freddd would be open to share his SNP's. Based on everything else he has shared, this would be a drop in the bucket and it would only help others with the same SNP's get a handle on their condition. It may literally help thousands of others who match his SNP's, or maybe even more than that, who knows...

 

[ahmo]

I think freddd would be open to share his SNP's

sounds like what you mean is should be open. He hasn't, so thinking he would be open to sharing is senseless.

 

[whodathunkit]

@drob31: I've shared a lot on this board, too, but there's a big privacy difference to sharing anecdotal stuff and giving a company swabs of your genetic material and then posting the results on a public discussion forum. Respectfully, I think you're ideologically wrong when you say genetic data is just a "drop in the bucket" of stuff people share here. I think it's a really big deal. Legally, you are wrong, period. If you post it on the internet for people to see, in most cases you've forfeited your right to privacy.

One reason I've not had my snps tested yet is because I'm not yet persuaded of the long term security of the data. Most laws in most countries forbid the misuse of genetic data, but another decade or two and a couple regime changes here and there and those laws could well be disregarded. Receiving healthcare could one day be predicated (at least in part) on whether or not your snps say you're worth the trouble and expense. Just for example. I have a feeling my snps might put me in the long house in that case.

That's not to say I won't get it done. I might. Still on the fence. I realize that my misgivings are likely overblown, and I *am* terribly curious about the mess that is likely my genome. I'm also really curious about my haplogroups. A few times in the last few months I came really close to ordering a testing kit. But privacy is just one of the reasons I haven't done it already.

Then there is also the fact that 23&me tells you things other than just snps that are relevant to CFS or other metabolic disorders. You can learn things you might not want to know. For example, do I really want to know if I have any genes for cancer? Some people may, but some might not. Maybe Freddd doesn't. He's had enough trouble already, I think. Not sure I do. I'm kind of a worrier and sometimes I borrow trouble. Knowing too much about my genetics might drive me crazy.

Helping people is all well and good, but again, no one is ever obligated to go further to help than they're comfortable or willing to go. IMHO Freddd did enough.

I just think it's a dismaying attitude to take that someone *should* share their very personal genetic data just because other people want to look at it and compare it. If someone says they don't want to have their genes tested everyone *should* respect that, and leave it.

 

[drob31]

@drob31: I've shared a lot on this board, too, but there's a big privacy difference to sharing anecdotal stuff and giving a company swabs of your genetic material and then posting the results on a public discussion forum. Respectfully, I think you're ideologically wrong when you say genetic data is just a "drop in the bucket" of stuff people share here. I think it's a really big deal. Legally, you are wrong, period. If you post it on the internet for people to see, in most cases you've forfeited your right to privacy.

One reason I've not had my snps tested yet is because I'm not yet persuaded of the long term security of the data. Most laws in most countries forbid the misuse of genetic data, but another decade or two and a couple regime changes here and there and those laws could well be disregarded. Receiving healthcare could one day be predicated (at least in part) on whether or not your snps say you're worth the trouble and expense. Just for example. I have a feeling my snps might put me in the long house in that case.

That's not to say I won't get it done. I might. Still on the fence. I realize that my misgivings are likely overblown, and I *am* terribly curious about the mess that is likely my genome. I'm also really curious about my haplogroups. A few times in the last few months I came really close to ordering a testing kit. But privacy is just one of the reasons I haven't done it already.

Then there is also the fact that 23&me tells you things other than just snps that are relevant to CFS or other metabolic disorders. You can learn things you might not want to know. For example, do I really want to know if I have any genes for cancer? Some people may, but some might not. Maybe Freddd doesn't. He's had enough trouble already, I think. Not sure I do. I'm kind of a worrier and sometimes I borrow trouble. Knowing too much about my genetics might drive me crazy.

Helping people is all well and good, but again, no one is ever obligated to go further to help than they're comfortable or willing to go. IMHO Freddd did enough.

I just think it's a dismaying attitude to take that someone *should* share their very personal genetic data just because other people want to look at it and compare it. If someone says they don't want to have their genes tested everyone *should* respect that, and leave it.

I really don't see how posting that your SUOX SNP is +/-, or that your homozygous MTHFR is going to destroy your privacy. First of all, your pretty much anonymous on here. Also, I wasn't advocating that he posted all of his results. But if he got the test done, and was able to pinpoint a few SNP's that matched up with these conditions, it would be pretty eye opening.

It's like everyone on here is desperately looking for a solution, spending god knows how much money and time, and struggling day after day, and the answer that could shed light on this is right there. Even if someone got their results, they don't have to check them all. You could simply get the methlylation and detox results. Don't even post them, but if you let people know some of the specifics of the methylation results... it could be very eye opening.

 

[whodathunkit]

First of all, your pretty much anonymous on here. Also, I wasn't advocating that he posted all of his results. But if he got the test done, and was able to pinpoint a few SNP's that matched up with these conditions, it would be pretty eye opening.

It's like everyone on here is desperately looking for a solution, spending god knows how much money and time, and struggling day after day, and the answer that could shed light on this is right there. Even if someone got their results, they don't have to check them all. You could simply get the methlylation and detox results. Don't even post them, but if you let people know some of the specifics of the methylation results... it could be very eye opening.
.

You are entitled to your opinion. It's not necessary that everyone share it, correct?

Personally, I consider my genetic information to be part of my confidential medical records. Whether or not I share it (if I ever get it analyzed) will be a very personal choice. Just because others don't understand how I see it does not in any way compel me to share or to change my mind. Probably I'm not alone in that. I can't speak for Freddd, but it's one possible explanation of why he never tested or posted it.

We are NOT anonymous on the internet any more. One has only to keep up with current events to know this. I'm personally not terribly worried about what any user here will do with my information (despite some differences of opinion, Phoenix Rising is one of the best, most civil forums I've ever been on), but what other entities (like governments) who troll the internet might do with it in the future.

I do understand the plight and desperation of people here. I sympathize and empathize. I myself have been in pretty desperate shape at different times in my life, for various reasons. But the desperation of other people, especially non-family members, does not obligate any one soul to give more than he has the energy or will to give, or to run him/herself into the ground to help others, especially when that soul is not in any better shape than anyone else. Freddd made over 4000 posts. Not as many as some, but he's one of the top posters ever on Phoenix Rising. How much help do we consider "enough"?

It's also worth noting that from what I've read, Freddd has taken a lot of grief for his "heretical" views. Despite over 4000 posts he has less than 700 likes, which, considering the volume of information he posted and the diplomatic, reasonable tone of his writing, is IMO very telling.

From what I read he really DID want to try to help people. But when he stated his experience and explicitly said that it was just what he noted, hadn't proved it yet, and was going to try, people still constantly challenged him to "prove" by mainstream objective methods his opinions and what he was trying to share. He was just one guy, and a fairly sick guy at that. It was like his experience didn't count, which, when we're all basically practicing alternative medicine, even doctors like Lynch and Yasko, is kind of mind-boggling.

Further, it's unreasonable to assume that he had any more energy or money than anyone else around here to run objective studies or even elucidate further what he thought. As a writer by nature and by education, I can tell you he poured an enormous amount of energy into this thread and others like it. From what I've read, quite a few people didn't appreciate his efforts. Plus, a lot of people seemed to expect him to be able to solve all their problems instead of just give advice on which path to try. So maybe he just didn't have the energy to do it any more. So I think we should all forgive him if he didn't just automatically straighten up and do everything everyone asked of him. Including paying for a genetic test out of his own pocket and then posting the data for the world to evaluate.

 

[shah78]

You make it sound as if Freddd has "passed away". He was just on PR talking about Tantric Sexuality two weeks ago. Seven hundred " likes". Amazing. What was that saying,"A prophet in his own land, is asked for a cite from a "real" medical journal" ?. Long live Freddd and long live his protocol.!

 

[shah78]

I'm really not so sure Freddd would ever do the Genetics Test. Cost/anonymity aside. Doing methylation blind only adds to his "mystic". "The Man", as we call him in our house, "Don't need no stinken test!" Long live Freddd and long live his protocol.

 

[drob31]

You are entitled to your opinion. It's not necessary that everyone share it, correct?

Personally, I consider my genetic information to be part of my confidential medical records. Whether or not I share it (if I ever get it analyzed) will be a very personal choice. Just because others don't understand how I see it does not in any way compel me to share or to change my mind. Probably I'm not alone in that. I can't speak for Freddd, but it's one possible explanation of why he never tested or posted it.

We are NOT anonymous on the internet any more. One has only to keep up with current events to know this. I'm personally not terribly worried about what any user here will do with my information (despite some differences of opinion, Phoenix Rising is one of the best, most civil forums I've ever been on), but what other entities (like governments) who troll the internet might do with it in the future..

I'm not going to respond to every statement, but I'll cover a few. We were never truly anonymous on the internet to begin with. But right now, who knows who you are on this forum based on your forum name? Perhaps RF and the gov can trace your IP to your residence, if that is even your residence. Sure it's possible to find out who you are, but if you think the gov or anyone cares enough about your genetic results on here to go through the trouble, I'm afraid you're mistaken, and it's bordering on conspiracy theory paranoia.

You're attempting to defend freddd, but the problem is, I'm not attacking him, I'm simply making a suggestion. I think it's great how he helped so many people, he's a hero, IMO. The fact that he gets mentioned in the same sentence as Yasko and Lynch is also very telling. Consider my proposition a "bold suggestion." If it doesn't happen then fine, but I put out the offer that I would pay for his test.

I likely don't have freddd's condition and I'm pretty sure any sort of methylation protocol wouldn't benefit me. However, after reading so much about CFS/ME while trying to figure out my condition it made me want to help someone if I can.

 

[shah78]

700 Likes .....4000 Posts....this is like not voting for BABE RUTH for the BB Hall of Fame! This is like not voting for the Beatles for the Music Hall of Fame. There is something seriously wrong here! Time to look within, PEOPLE!

 

[shah78]

Not to belabor the point (though this is the 3191 th post on this thread!) I don't "think" Freddd is "really" anonymous. I'm assuming he really is Fred D. Davis from St Lake City. I think the "Feds" could find him! Of course he may have made the whole thing up and is really a guy named Barak Obama, living in
Washington D.C.. Anything is possible? NO?

 

[whodathunkit]

@shah78, I was merely speaking about the ratio of posts to likes. Forums are like other social groups, and the true dynamics of things can be told by a variety of measures both subtle and unsubtle.

For example, some members have more likes than they have posts. But unlike Freddd, all the posters I've observed that have that kind of ratio are posting much more mainstream, backing up Lynch and Yasko protocols, etc., with links to studies off PubMed, stuff like that. You know Freddd doesn't really do that. He experiements on himself and draws on the anecdotes of others. As an amateur student of psychology and sociology, I draw some minor conclusions about forum dynamics from the "like : post" ratios. YMMV. I know I could be off base, but I'm comfy with my own opinion right now. If something happens to change it, I'll be sure to let you know.

Further, there's big difference in knowing someone's name and knowing/having access to their genetic data. Hope you see the difference. If not, I'm still comfy with my opinioin. But I'll be sure to let you know if that one changes, too.

I don't know why Freddd's not posting in detox forum any more, but I do hope he comes back one day. However, I honestly wouldn't blame him if he didn't.

@drob31: I didn't really think you were attacking Freddd. But I perceived some remarks in this thread to be coming from somewhat of an entitlement-minded standpoint, like because Freddd gave all this great advice we were entitled to more from him. That is not the case. Everyone on this forum is energically challenged in some way or another...otherwise we wouldn't be here. So here moreso than anyplace else, IMO we are entitled to exactly what each other is able and willing to give, and no more. That includes genetic data.

 

[shah78]

@whodathunkit I think you missed all my smiley faces! They means that I'm talking "Sarcastically, humorously, with wimsey" et al. Google: internet/smileyfaces for more explaination. And once again, I will add a few more smiley faces . This time in pink and purple., and green

 

[Freddd]

If Jarrow has gotten their MeCbl back to what it was like before is great. I'm sure they have heard the comments and noticed changes in buying habits. The "nervous" feeling is a GREAT sign that it is working on the nerves.

There is no doubt at all that the gum and buccal surfaces absorb MeCbl well. The largest molecule by the way is AdoCbl. That it shows up in the urine in highly visible amounts shows without a doubt that it is absorbed well. I ran over a thousand iterations of comparison testing, SC injection versus oral mucosa absorption. Oral swallowing absorption requires about 1000mg oral dose (4x250mg) over 12 hours to produce the visibility equivalent to a 10mg injection verifying the 1% absorption that research states occurs. It also produces the same neurological results as the 10mg injection or 50mg sublingual or gum-lip.

Others have reproduced the same results. It is easy enough to do.

 

[Freddd]

@LynnJ: it takes A LOT of mB12 to provoke color change in the urine. And then it's not the bright fluorescent yellow of B2 but a deeper yellow, like more an orangey/pink yellow. At least, that's my experience.

When I was taking folic acid, a 2.5mg sc injection produced a noticeable tint. When I added 400mcg of Methylfolate to the folic acid that went to 4.4mg to be barely visible. When I went to 15mg of mfolate and zero folic acid it takes 10mg injection to produce a barely visible tint. When I took glutathione the tint was equivalent to a 100mg injection. I calibrated the toilet bowl with measured amounts of MeCbl. It takes 1mg to be barely visible.

 

[Freddd]

[quote="whodathunkit]
He was experimenting on himself with high dose mB12 to see if it couldn't help him heal from some brain and cord
Also worth noting is that there may be something to Ben Lynch's contention that excess mB12 turns into a free radical if it's not balanced with the correct amount of folate.

Link please? I have never heard of such a thing. I'm injecting 10mg hydroxyb12 intramusculair twice weekly and probably quite a bit of it converts to mb12.[/quote]

Hi Thinktank,

With a 10mg injection of HyCbl 75% is excreted from the body unchanged in an hour or so. IN 2 days, 99% is excreted unchanged. Typically about 10mcg a day of HyCbl is converted to MeCbl/AdoCbl. From a single injection one might reap as much as 20-30mcg of active b12s over 2-3 days.

Also worth noting is that MeCbl is excreted unchanged almost as fast as the HyCbl. A 100mcg MeCbl injection gives far more MeCbl into serum than any size HyCbl injection. A correct amount of l-methylfolate slows down the rate of excretion.

 

[Freddd]

Can you provide more details?
I thought slowly dissolving between gum and cheek did provide better absorption. I thought it would make sense, because under the tongue there's more saliva and the tablet dissolves too quickly and gets partly ingested.

Didn't Freddd test the difference between the two modalities (tongue vs cheek/gum) using urine tests?

Hi PeterPositive,

To settle methodology questions. I made a set of test specimens of different dilutions and matched it to calculated amounts in the white toilet bowel, such as 1, 5, 10 and 20 mg, like a pool test kit. I also used a backup method of color printing filters in 05 increments, As MeCbl solution is magenta, not red, it works very well with yellow and cyan printing filters. The amount of cyan and yellow needed to bring the urine to neutral grey tells the amount of magenta and detects subtle differences.

It is like totally obvious that MeCbl is being absorbed by the oral mucosa when it shops up in the urine and can be directly compared to SC injections by effectiveness and color. Thousands of repetitions over 10 years revealed an unknown influence on serum halflife following sublingual or SC injection. After a while of collecting the data and seeing the patterns, the influence of folate was found.

To even think of these items and questions one has to experience them.

 

[Freddd]

I think Freddd said that he was doing buccal absorption of as many as 20 5000mcg lozenges per day to try to replicate the serum levels he would achieve with like 30 mg/day of injectable. Something like that. So yeah, lozenges are not anywhere near as viable as injections for getting a decent amount of mB12 into the bloodstream.

But is *oral* dosing with B12 comparable to or better than *sublingual/buccal* delivery? That's the question.

Based on what I've read for the last 20 years about damage especially to mB12 while passing through the stomach, and also about B12 absorption problems in the digestive tract for many if not most people even if it is able to pass safely through the stomach, I'd say no. But I don't know for sure. Valentjin could be right.

Passive absorption from doses over 10mcg, usually based on 1000mcg, is repeated from slightly less than 1% to slightly more than 1%. The research is very clear on this and has been replicated over and over. To get enough b12 in serum to see it in the urine requires 500 to 1000mg of oral MeCbl compared to 30-50 mg of a 5 star sublingual.

 

[Freddd]

I did try increasing potassium, to the point where I got sick to my stomach.

The thing that helped relieve the severe folate-related pain was hydroxy B12. I've actually discovered that the hydroxy B12 (Perque 2000mcg) seems to relieve my symptoms (neuropathy in feet, terrible shoulder/clavicle/upper arm pain) better. I've done a fair amount of research here and some people say hydroxy B12 is useless (or can actually make matters WORSE), while others say it's a perfectly good option that works better for some people compared to methyl B12.

As usual, it's all very confusing.

For those of you who reap benefits from B12 - whether you have a deficiency or not - do you find that it wears off very quickly if you forget a dose?

And secondly, has anyone tried B12 drops? http://www.holisticheal.com/hydroxy-b12-mega-drops.html

I'm kind of debating trying yet another doctor.... I'm so tired of the problems with my feet and shoulders I could scream. I wouldn't mind trying hydroxy B12 injections to be honest. But there aren't many naturopaths by me and I've heard horror stories about how expensive they are. Pain Management doctor, maybe?

Given how much the B12 helps my issues, I really hope it's the ultimate cause/solution here, because everything else I've tried has failed. Cortisone injection, chiropractors, massage, physical therapy, Naproxen, x-rays, an MRI of my neck... Nothing! And it just makes no sense, because this isn't like a minor muscle ache. It's the worst pain I've ever had.

Hi Lynn,

The folate related pain often is from effectiveness one way or another; feeling it more or induced potassium and folate deficiencies which are flags of healing.. Coming back from numb starts with multiple types of pain. The HyCbl turns off the healing and hence the pain. B12 is excreted rapidly. More Metafolin means better retained B12.

 

[LynnJ]

The problem is that the folate increases the severe pain I already have and makes it borderline debilitating. I can't function like that, so I'm not taking it at the moment. I read that folate can exacerbate existing inflammation, so I figured that was the cause. I know some people here have said they can't take Metafolin period...

I've discovered that chewing my B12 and swallowing it on an empty stomach gets me better, more consistent relief from my severe shoulder pain and neuropathy. Sublingual does not seem to be as effective. Anyone have a theory as to why this is?

If HyCbl is so bad, why does it work so well for some people? I was under the impression that for certain people (based on their genes), it was the better option.

It gives me the same potassium deficiency symptoms methyl B12 does, so I figured it must be working. Right now I combine it with methyl B12.

Anyone here know if that Country Life Methyl B12 is still the preferred brand now (besides Enzymatic Therapy)?