Which thread is absolute easiest to read re: Methylation for Dummies?

[Gingergrrl]

The one piece of this board that I am not able to understand are all the posts re: methylation. My husband just ordered the 23andme kits for our whole family but we do not have them yet. When I see all the abbreviations in people's posts, they go right over my head and I feel like an idiot!

Is there a thread that literally explains what the word methylation means and what someone like me should do who has not yet taken the test? Whenever I ask my ND, she says let's wait for the 23andme tests before we add any Vit B or folate.

So I do have not taken any of these supplements for months (since I stopped the multivitamins that made me nauseous.) My ND also thought the B vitamins were "too agitating" for me but now I am not sure if this is correct. Is this b/c of my tachycardia? I take Vit C, Vit D, and a million other supplements daily.

Is there a basic Vit B/folate that you guys recommend for someone in my position? Which version of Vit B and dosage are best for someone with CFS? I feel like I am missing the boat on this issue

 

[minkeygirl]

There isn't one that I have found. Most of them are really long and convoluted and I have yet to be able to understand it.

You're better off just asking a question and tagging @caledonia, @Martial or @adreno. There may be some others.

 

[Sushi]

@Gingergrrl43

You could look here and browse through the presentations.

Also the other testing route is to test your actual levels of all the nutrients involved in methylation. I think the methylation panel (the NJ branch of the lab) tests about 13 values. This tells you your current status re: methylation. On the page linked in the first paragraph, is a guide to interpreting this test.

23andme gives you your SNPs (single neucleotide polymorphisms), or your genetic status for methylation and other conditions.

Sushi

 

[Gingergrrl]

@minkeygirl Thanks for tagging them and maybe they will see this thread. I am often very slow with understanding a new concept but then once it finally clicks for me, I can become an expert LOL. This concept so far is just not clicking for me but I feel like everyone is taking Vit B or even doing Vit B shots and this has not been recommended for me and i don't want to miss something so crucial!

 

[Gingergrrl]

@Gingergrrl43

You could look here and browse through the presentations.

Also the other testing route is to test your actual levels of all the nutrients involved in methylation. I think the methylation panel (the NJ branch of the lab) tests about 13 values. This tells you your current status re: methylation. On the page linked in the first paragraph, is a guide to interpreting this test.

23andme gives you your SNPs (single neucleotide polymorphisms), or your genetic status for methylation and other conditions.

Sushi

@Sushi Is the methylation panel something that can be ordered at a US lab that either a NP or CFS specialist could order and interpret? Thank you and I will also look at the links.

 

[Sushi]

@Sushi Is the methylation panel something that can be ordered at a US lab that either a NP or CFS specialist could order and interpret? Thank you and I will also look at the links.

I gave you the link to the lab in New Jersey. This is the testing route I took. Any doctor can order this.

Sushi

 

[Gingergrrl]

I gave you the link to the lab in New Jersey. This is the testing route I took. Any doctor can order this.

Sushi

@Sushi Oops, sorry I didn't read it yet! Is the consensus/overview that every PWC should be taking Vit B and folate or are there some people where it would be bad for them?

 

[Sushi]

@Sushi Oops, sorry I didn't read it yet! Is the consensus/overview that every PWC should be taking Vit B and folate or are there some people where it would be bad for them?

See chat!

 

[Valentijn]

@Gingergrrl43 - There's a few things you can do with the 23andMe data.

The simplest is to upload that data, once you get it, to various websites which look for certain results (SNPs) and indicate if you have the good or not-so-good version of those SNPs. One of these is the Yasko style methylation panel at http://geneticgenie.org/ . That one is free, though there are also more elaborate ones with more data that cost money. Livewello is one, I think, and there's another one from some idiots who like to plagiarize and don't actually understand what they're cutting and pasting. Personally I wouldn't bother with the paid ones.

Another thing you can do is download http://sourceforge.net/projects/analyzemygenes/ and that will pull out your super rare results, which can be useful in finding rare pathogenic mutations, or even just possible problematic rare mutations.

http://www.math.mun.ca/~dapike/FF23utils/ has some fun functions to play around with. The parent-child processing is especially interesting when you have the raw data for children and parents available. It brings up "impossible" results for the children, which could be from spontaneous mutations or from 23andMe errors.

You can also look up your individual gene and SNP results on 23andMe. Sometimes you might come across research indicating that a certain SNP is implicated in a disease process, and you can easily log in and use the "explore" option to look for it to see which version you have.

Something else I've been doing is collecting 23andMe results from ME patients here to create my own clone army look for any shared rarities. This has turned up some rare similarities, though nothing particularly revolutionary yet But more data means any similarities that do turn up are less likely to be due to random chance, so that's always a good thing. I also sometimes find some pathogenic or milder yet significant likely problems that one person has while looking for these similarities, so that can be useful as well.

 

[xchocoholic]

Heeheehee. Welcome to me/cfs. Don't beat yourself up. I would suspect that most pwcs can't understand this. It's been demonstrated via neuropsych testing that our short term memories don't convert to long term memories.

Are you having trouble following directions? I can remember 1-2 street names at a time but that's it. Lol. Thankfully my phone has maps.

Also, imho this is actually just a theory that is commonly treated as a fact. Richv was the first to point out that it was a theory and his job was to theorize. RIP Rich.

Many of us can't take the supplements involved. Even if I take these in small doses the effect builds up until it's unbearable.

When I questioned Rich as to what symptoms might improve via his protocol, it turned out that many of the same symptoms could resolve by eliminating toxins. Most of the symptoms he listed had resolved for me via eliminating my food and chemical.

Fwiw, what I found lacking in this theory and most biochemical theories was the mention of enzymes or catalysts required to convert A to B. A can't be converted to B without a catalyst.

Tc .. x

 

[shah78]

Think:" Tail of two cities". . There are the" SNP mavens" and the "explorers". The easiest (written) "SNP maven" is Heartfixer.com. The easiest (video) "SNP maven" is Jess Armine" new July 7thpodcast. ...........But you are really asking for the guide to the "explorers". Member ahmo has just complied a forty plus page "monument" to Freddd's theory on how to "upregulate methylation" without or before SNP testing.Also search member, Richvank who gives an even simpler (though) slightly different) version. I started tinkering with my methylation three months before getting the 23 &me results. You don't need the results to start. You have to tinker anyway. And you have to tinker everyday, if not every hour of the F%^&king day! for the rest of your life.! And that' a good thing. (I guess). Your doctor is really just blowing smoke up your ass! H/she is doing that "health provider thing". ie . "You can't do this by yourself, you have to PAY ME TO DO IT FOR YOU. You should read Freddd and Richvank this morning and buy some B12/folate this afternoon and start SLOWLY adding the (potential)"manna from Heaven" . Then report your results to the "invaluable health care professional". Good luck .

 

[caledonia]

Hi Gingergrrl. I have created easy to understand materials just for beginners like you. I have these and other useful links in my signature below this post. Start with the "Methylation Made Easy" videos, then work your way down the page to "Start Low and Go Slow" and "Roadblocks to Successful Methylation". The Heartfixer page is also an excellent summary.

If you have the funds, I would also suggest getting a Nutreval test done at this time.

Then you will be in good shape to proceed with supplementation. It may be that you will need to work on your gut and the CBS pathway FIRST before starting methylfolate and B12, so I would hold off on those until you at least get your 23andme test back.

When you get your 23andme test back, run it through geneticgenie.org and post your results. People on here can help with interpretation.

 

[Gingergrrl]

@Gingergrrl43 - There's a few things you can do with the 23andMe data.

The simplest is to upload that data, once you get it, to various websites which look for certain results (SNPs) and indicate if you have the good or not-so-good version of those SNPs. One of these is the Yasko style methylation panel at http://geneticgenie.org/ . That one is free, though there are also more elaborate ones with more data that cost money. Livewello is one, I think, and there's another one from some idiots who like to plagiarize and don't actually understand what they're cutting and pasting. Personally I wouldn't bother with the paid ones.

Another thing you can do is download http://sourceforge.net/projects/analyzemygenes/ and that will pull out your super rare results, which can be useful in finding rare pathogenic mutations, or even just possible problematic rare mutations.

http://www.math.mun.ca/~dapike/FF23utils/ has some fun functions to play around with. The parent-child processing is especially interesting when you have the raw data for children and parents available. It brings up "impossible" results for the children, which could be from spontaneous mutations or from 23andMe errors.

You can also look up your individual gene and SNP results on 23andMe. Sometimes you might come across research indicating that a certain SNP is implicated in a disease process, and you can easily log in and use the "explore" option to look for it to see which version you have.

Something else I've been doing is collecting 23andMe results from ME patients here to create my own clone army look for any shared rarities. This has turned up some rare similarities, though nothing particularly revolutionary yet But more data means any similarities that do turn up are less likely to be due to random chance, so that's always a good thing. I also sometimes find some pathogenic or milder yet significant likely problems that one person has while looking for these similarities, so that can be useful as well.

@Valentijn Thank you for all the info and when we do the 23andme kits in the future, I will definitely be asking you a lot of questions. You are a freakin genius with this stuff whereas I literally do not even know what most of these words mean! I've decided for now not to stress myself out about all this as I am preparing for my trip and appt to the specialist.

I've decided not to randomly start B-12 or folate as I would have no idea what brand, dose, or even if I have a methylation problem. I've waited this long, I may as well wait for proper testing to be done (in all areas) and then I will be asking you all kinds of questions! I love that you are looking for rare similarities amongst us sufferers and you may discover a common link that helps find a biomarker. Please continue with your work, it is really needed.

 

[Gingergrrl]

Hi Gingergrrl. I have created easy to understand materials just for beginners like you. I have these and other useful links in my signature below this post. Start with the "Methylation Made Easy" videos, then work your way down the page to "Start Low and Go Slow" and "Roadblocks to Successful Methylation". The Heartfixer page is also an excellent summary.

If you have the funds, I would also suggest getting a Nutreval test done at this time.

Then you will be in good shape to proceed with supplementation. It may be that you will need to work on your gut and the CBS pathway FIRST before starting methylfolate and B12, so I would hold off on those until you at least get your 23andme test back.

When you get your 23andme test back, run it through geneticgenie.org and post your results. People on here can help with interpretation.

@caledonia I also wanted to thank you for all your work on this and when I am more clear-headed and ready, I am going to look at all your beginners links. Like I said above, I am not going to start anything new until tested for methylation and checking with my new MD and current ND first... and then fully checking it out with you guys. Thanks again!

 

[Sushi]

@Valentijn

Please don't give up on this:

Something else I've been doing is collecting 23andMe results from ME patients here to create my own clone army...

This could lead to a real breakthrough for us.

Sushi

 

[AndyPandy]

@Valentijn

Please don't give up on this:
This could lead to a real breakthrough for us.

Sushi

Just ordered my 23andMe kit.

@Valentijn happy to share my results with you when I get them.

 

[Martial]

I am a bit late to this thread but my sig has a perfect to use and simple guide for anyone interested!

 

[Coolie]

I can't figure out what methylation is either, but it's pretty clear I had a chronic deficiency in Zinc and B12, and things are starting to right themselves by taking them. I have found the difference between high dosage B12 (over the counter brand) and sublingual methB12, very little if anything. It's fascinating that you guys go and get genes tested, but I can't even think why I would need to do it personally.

 

[shah78]

I can't figure out what methylation is either, but it's pretty clear I had a chronic deficiency in Zinc and B12, and things are starting to right themselves by taking them. I have found the difference between high dosage B12 (over the counter brand) and sublingual methB12, very little if anything. It's fascinating that you guys go and get genes tested, but I can't even think why I would need to do it personally.

Good point Coolie,The "experts" tell people that "death will ensue" if not tested and given the $300 an hour advise....plus $150 followups. Follow the money$$$$$$$$$. Now to be fair, I have had the 23 &me test and I really enjoy reading all about the theories, quesses, and bullshitting that goes on. (It's the methylation version of SPORTS TALK RADIO?) I plan to call myself an expert at some time in the future, but I promise that I will always preface any advise with a similar disclaimer. I will always mention the Freddd/richvank option.

 

[whodathunkit]

I think genetic testing comes in handiest when people have really complex and mysterious health problems that don't seem amenable to treatment. Knowing snps can probably help these people the most.

Not sure why anyone would want to clone an army out of genes with some of the health problems we have around here , but IMO future healthcare rationing based on genetic testing is a very real concern we should all be vigilant against.