Anyone else have methylfolate "wear off" after ~6 hours?

[Valentijn]

In my opinion, people with methylation mutations are the "canaries in the coalmine" - they're already not detoxifying well, so when they accumulate metals, they're more likely to get sick than someone without mutations.

Most people have methylation mutations, so that would be an awful lot of canaries.

 

[bigmillz]

Most people have methylation mutations, so that would be an awful lot of canaries.

LOL

 

[stridor]

@Valentijn That makes me think. It could be survey time Of everyone on this site who has been tested for metal toxicity, where do the numbers fall? I suspect that of those with multiple and potentially significant methylation SNPs, who have been tested, will prove to be poisoned canaries

 

[caledonia]

Well, guys, thanks again! I'm going to put a reference to this thread someplace where I hope I'll remember it when I need it about a year or so from now. Meanwhile, I've got a headache for some reason and am gearing up for the lower left quadrant of my mouth to be mercury-free after tomorrow. Are there any mercury-specific threads here or just the random mention in many? I know for example that both @garyfritz and @Johnmac have dealt with or are dealing with mercury issues. I've read about them largely on the Transdermal B-12 threads.

I've also become a member of the Facebook Cutler Chelation site, but I still have to get and read the book--I've just become aware of the dueling protocols where the Cutler folks have nothing good to say about, say Quicksilver Sceintific's Mercury Tri-Test, as opposed to the Doctor's Data one for metals. Opinions? I've only had NutrEval and other very standard blood work by my primary care physician, this latest in blood work only, which I understand doesn't have to do with past exposure. Still, given I eat almost no fish, the results were a bit dismaying: Blood Mercury: 5 ng/mL (in a range of: 0 - 9 ng/mL).

I think there are just a few people on here doing Cutler chelation. The Frequent Dose Chelation Yahoo Group is more to the point than the Facebook group. There are a lot of newbies on FB and you see some wrong info being given out. But they're maybe a bit more tolerant of discussing MTHFR and methylation.

If you want to discuss ME, Cutler chelation, MTHFR, methylation etc, this is probably the best place to do it.

The thing with Quicksilver is a lot of people have gotten worse on this protocol. Check out http://cutlersuccessstories.weebly.com/what-not-to-do.html Once you get a handle on the Cutler protocol, it will start to make more sense as to why that is.

Mercury is showing up in your blood work because you still have mercury fillings giving you mercury vapor exposure. I had the same.

ps. congratulations on getting the lower left quadrant out!

 

[Valentijn]

I suspect that of those with multiple and potentially significant methylation SNPs, who have been tested, will prove to be poisoned canaries

Most people with metal problems will also have significant methylation mutations - because most people have significant methylation mutations, period. Such an exercise would not establish any sort of correlation, especially if controls of some sort are not being used.

2 of the MTHFR mutations are so common that the average functioning of the gene in the general public is reduced by 30%. For the 31 ME patients and roughly matched controls whose 23andMe results I compared, there was no difference in the rates of mutations known to have an impact, nor in the average estimated enzyme activity resulting from those genes.

 

[garyfritz]

Chelation was super-tough until I took mB12 and found a "rung in my ladder".

In my very first post here, I said I had massive B12 needs for some reason but I didn't think I was dealing with the same CFS/ME problems that many here were. I still think that's true, and now I strongly suspect my mystery B12 issue was mercury all along. I've had issues for decades (and of course I've had amalgams for decades), but things flared really badly about 5 yrs ago -- just about the time, I later realized, that a filling degraded and fell out.

So now I'm going through dental revision and I hope to start chelating within two months or so. I hope my process goes smoother than yours, @stridor -- I'm hoping my B12 intake prevented damage and will prevent difficulties with chelation.

I'm probably pinning way too many hopes on chelation. But I have so many symptoms and so many clues that point to mercury. I really hope addressing that bugaboo will help a lot of issues I struggle with.

 

[stridor]

@garyfritz Never hurts to be hopeful There are only so many things that can lead to multi-system illnesses and poisoning is one of them. There is no downside to moving against mercury when you are young enough to do so. I know of people who are too old and sick to make the investment. Everyone gets sicker before they get better.

Did you do a hair test yet? Your avatar aside, have you had any hint of Mad-as-a-Hatter?

 

[stridor]

@Valentijn
I see what you are saying. My problem with all of this is that I have been told to ignore MTHFR, Plus, heterozygous anything, the 7++ corticoid receptor genes, the corticotropin releasing hormone genes, the TCN2, MTRR and so on.

I was already established on hydrocortisone, mB12 and mfolate before the 23 test. All of this makes no difference to me now as I have been lucky in all of this and have largely recovered. I never look at my 23 results anymore.

But I have a hard time reconciling this. My profile says that I might need more mfolate than the next guy...and I do. It says that I might need more mB12 than the next guy....and I do. It says that I might need more Vit D than the next guy and I need 10,000 IU daily to reach normal levels. And it says that I might need more HC ... and I do.

I had my colon removed because of epigenetics. Can modify gene expression increase the likelihood that a person's m-pathway SNP's might become an issue? I know that questions like this are pretty basic for someone like you.

You can have my results if you wish. There was a rare SNP in there that turned up on one of the panels but I don't remember what it was.

 

[garyfritz]

Did you do a hair test yet? Your avatar aside, have you had any hint of Mad-as-a-Hatter?

Yes, my hair test met several Cutler counting rules. More tellingly, my symptoms started to flare again about 8 months ago, and b12 didn't help. I was panicking. Then I learned about ACC, and I realized I'd recently started taking a twice-daily multi that contained 25mg of ALA. I stopped taking it and the symptoms vanished in 24-48 hours. The ACC experts say a definite reaction to ALA is proof-positive for mercury.

No hatter-madness. At least the voices told me to say so. I was going a bit crazy during the episode 5 yrs ago, but that cleared when I could sleep and didn't have insane-making body sensations or constant fight-or-flight reactions. Now the closest thing I have to mental issues is a bit of ADD, which I've had all my life.

 

[Emily L]

What's methylfolate, is it good for Epstein Barr?

 

[Valentijn]

I see what you are saying. My problem with all of this is that I have been told to ignore MTHFR, Plus, heterozygous anything, the 7++ corticoid receptor genes, the corticotropin releasing hormone genes, the TCN2, MTRR and so on.

These are very different issues than suggesting that the common methylation SNPs that most people have are also making them (most people!) extra prone to problems with metals, or anything else in general. The common MTHFR mutations do have an impact, but it doesn't cause wide-spread problems because eating a normal amount of vegetables full compensates for it.

Heterozygous SNPs can have an impact, but they are also usually extremely common, especially the ones listed by Yasko and similar sources. SNPs on those genes certainly can have an impact, and even cause disease - but we can't just play "count how many are homozygous" or even pay much attention to ones which have a shown a tiny impact that is likely the result of poor statistical methodology. The reality is that everyone has thousands of such mutations, and most are having absolutely no health problems.

Due to the poor quality of information regarding SNPs from many commercial sources, patients are put in the position where they have to become something of an expert themselves, or they end up relying on upon quackery.

I had my colon removed because of epigenetics. Can modify gene expression increase the likelihood that a person's m-pathway SNP's might become an issue?

No. Epigenetics is basically what happens to a gene, or the enzyme it produces, from outside of the gene. So a factor which is external to the gene steps in and (typically) up-regulates or down-regulates it. This can result in more or less of the enzyme. But it does not somehow cause a SNP inside the gene to behave differently, or to become more or less "expressed".

The word "epigenetics" itself is a good indication of what is happening. "Epi-" is a prefix meaning "near". Hence it's factors which are "near" the genetics of an enzyme, but not actually an integral part of the genetics. SNPs are an integral part of the gene - they can cause an enzyme to be formed with different amino acids, and/or a different structure, and even have a direct impact on how much of the enzyme is produced, depending where the SNPs are on the gene. But epigenetic factors are only capable of influencing the entire product of the gene. They can't reach inside the gene and change how a SNP is functioning.

But some people, when called out on Yasko's claims being completely disproven by scientific research, will resort to hand-waving and some vague mumbling about epigenetics and gene expression potentially causing a SNP to suddenly do something radically different. They simply have no bloody clue what they are talking about.

If you are really interested and your brain is up to it (mine certainly wouldn't be currently), Coursera has some very good introductory genetics classes. They're free, and there's no harm in learning what you can and not worrying about the rest if crashed, etc.

A couple intro courses that sound decent:
https://www.coursera.org/learn/genetics-evolution - 11 weeks, unknown hours per week but sounds easy
https://www.coursera.org/learn/genomics-research - 6 weeks, 6-8 hours per week

And also maybe interesting, after getting a basic background:
https://www.coursera.org/learn/genomic-precision-medicine - 7 weeks, 2 hours per week
https://www.coursera.org/learn/epigenetics - 7 weeks, 6-8 hours per week

Full list of genetics courses at https://www.coursera.org/courses?languages=en&query=genetics

 

[CCC]

Most people with metal problems will also have significant methylation mutations - because most people have significant methylation mutations, period. Such an exercise would not establish any sort of correlation, especially if controls of some sort are not being used.

2 of the MTHFR mutations are so common that the average functioning of the gene in the general public is reduced by 30%. For the 31 ME patients and roughly matched controls whose 23andMe results I compared, there was no difference in the rates of mutations known to have an impact, nor in the average estimated enzyme activity resulting from those genes.

I see what you are saying here, and I'm not arguing. This is a question.

Is it possible that ME patients have nothing unusual in overall incidence of any one mutation, but they got a really dogdy combination they few few have?

This came out of a conversation with my son the other night. He is trying to program some combinatorial maths thing, and we started to wonder what how many viable permutations there would be of human genetics.

 

[stridor]

@garyfritz If you know my story, you 'll know that I ended up in trouble supplementing with ALA in 2008. The effect on my health was so profound that only now would I say that I have recovered the ground lost. Of course, I had to retrial it But this was before I learned about Cutler and ALA.

I said at one time that my efforts to control bipolar resulted in removing psychosis and introducing neurosis. The anxiety attacks period was in 2010 and served to make me uncomfortable enough to go through the effort of having the amalgams taken out. Albeit unsafely, and that too is part of my story.

Keep an eye out for other issues. You are already a light-year ahead of me by tackling methylation. The others for me were the gut, which I erroneously believed would sort itself out and infections. The problems that you are identifying skew the immune system and you need to be aware the "the door has been left open" to parasites and "stealth infections"

You are definitely on the right track and I suspect that you are going to do fine. Just dig in and chelate. It is not much fun by it is worth it. If you join the Cutler's groups - there is a fb page that is of questionable value as it does not avail itself to archiving and there is FDC on Yahoo that has a wealth of information. My brother Brian, is one of the moderators.

If there is anything I can help with, I am only a PM away. Good luck.

 

[Valentijn]

Is it possible that ME patients have nothing unusual in overall incidence of any one mutation, but they got a really dogdy combination they few few have?

No, at least not based on the significant mutations on MTRR and MTHFR. Only 4 controls and 4 patients don't have either A1298C or C677T mutations out of the 31 of each that I have side-by-side data for. I wasn't kidding when I said pretty much everyone has these mutations - it works out to approximately 87% in both groups.

I actually did look at the approximate percentages of reduction for methylation genes which could be having an impact (AHCY, BHMT, BHMT2, MTHFR, MTR, MTRR), and the averages are the same for both patients and controls. And the cumulative average impact across genes was the same for both controls and patients (75% versus 74%). The range of cumulative values was from 155% down-regulations to 10% up-regulations for patients, and from 170% to 10% down-regulations for controls. 6 ME patients had very little cumulative reduction in the function of those genes, at 25% or less, versus 3 controls whose cumulative function was reduced by 25% or less.

Of course, this is a small set of data I'm working with, but what has been published regarding methylation SNPs and disease also seems to show to significant effect from those SNPs.

 

[caledonia]

Yes, my hair test met several Cutler counting rules. More tellingly, my symptoms started to flare again about 8 months ago, and b12 didn't help. I was panicking. Then I learned about ACC, and I realized I'd recently started taking a twice-daily multi that contained 25mg of ALA. I stopped taking it and the symptoms vanished in 24-48 hours. The ACC experts say a definite reaction to ALA is proof-positive for mercury.

No hatter-madness. At least the voices told me to say so. I was going a bit crazy during the episode 5 yrs ago, but that cleared when I could sleep and didn't have insane-making body sensations or constant fight-or-flight reactions. Now the closest thing I have to mental issues is a bit of ADD, which I've had all my life.

I have a lot of hopes pinned on chelation too. It's something that keeps me going, so why not. If turns out not to be helpful, maybe there will be something else better in the future, and the doing of the chelation kept me around long enough to get there.

At any rate, I've already had some good results, so it seems to me that it will continue to be helpful. I had a number of good things happen about a year and a half after my last mercury filling came out (with no chelation), and some more improvement as I've been chelating. I just finished round 24 with a low dose of ALA.

 

[caledonia]

What's methylfolate, is it good for Epstein Barr?

Methylfolate is the active form of folic acid which is one of the B vitamins. Your body takes in folic acid and it goes through several conversions to get to the methylfolate form where it can actually use it. So taking methylfolate bypasses that process. People with certain gene mutations can have trouble converting folic acid. So taking methylfolate can be helpful.

Will it help Epstein Barr? I would say, not directly like an antiviral, but there might be some indirect benefit if you're low and need supplementation.

It's best to take methylfolate along with at least B12 if not some of the other B vitamins.

 

[garyfritz]

Keep an eye out for other issues. You are already a light-year ahead of me by tackling methylation. The others for me were the gut, which I erroneously believed would sort itself out and infections. The problems that you are identifying skew the immune system and you need to be aware the "the door has been left open" to parasites and "stealth infections"

I can't really claim to have done much with methylation. I experimented with the basics of Freddd's protocol and experienced exactly zero effects from anything but B12. Which, I think, would make sense if my problem is mercury and NOT methylation. Hopefully the past & future B12 dosing will help chelation. And hopefully my overall good health will carry me through it.

If you join the Cutler's groups - there is a fb page that is of questionable value as it does not avail itself to archiving and there is FDC on Yahoo that has a wealth of information. My brother Brian, is one of the moderators.

!!!! OK, I had no idea. Brian has mentioned you many times. Glad to connect with you here!

 

[Kathevans]

ps. congratulations on getting the lower left quadrant out!

Thanks! Just recovering. Having that root canal tooth taken out was, well, quite a challenge. Yikes. But I'm glad that part of my mouth is done. Of the two crowns removed, both had amalgam underneath, so I'm glad to have them gone, too. I'm going to have to build up my courage again before having the last root canal pulled, though the dentist says it has a blunter root than this last. As it is, it will take three months of healing before the final bridge will be put in there. I've been told, though, that quadrants could overlap, that is, prior to my August 4th appointment to go in and have the final bridge put in place, I could go in to have another quadrant (probably the last root canal because why not get the worst out of the way first?!) done, say in July... I'm still thinking about that...

Thanks for your info, though. Now I have to begin to read those books so I'm more informed.

To all of you, thanks. I'm learning as I go here.