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If you can't wrap your brain around the protocols here, there is another option

CFS_for_19_years

Hoarder of biscuits
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2,396
Location
USA
Is your brain going OW, OW, OW yet? I think this forum can be overwhelming for anyone trying to figure out where they are going to start.

You may have heard about Dr. Ben Lynch's site by now if you've been doing a lot of reading. I found one article on how he treats C677T mutations and it includes a stepwise protocol about how to use methylB12 and methylfolate - how much to use, when and how to take them, etc.

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

If you scroll down to Part II on that page, the first sentence says:
Methylfolate Recommendations for those homozygous for the C677T MTHFR Mutation

From there forward you can see the stepwise recommendations. Dr. Lynch has his own line of supplements, but you can certainly use your own. For a while he was accepting new patients, but as of last fall he stopped because of a full schedule.

What we refer to as "startup" at Phoenix Rising, he calls "detox." I don't know which term is more accurate, but they seem to be the same constellation of symptoms.

I can't say whether you should be tested for the C677T mutation. I don't have the means to afford the test or to be seen by a nutritionally-oriented doctor, so I'm just going to see how I respond to the supplements and go from there.

Best of luck to everyone.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
The link I gave in my original post is for those who might be thinking, "Just tell me what to take and when to take it." One click, one protocol from a licensed, credentialed naturopath.

Thank you Bluebell and caledonia for chiming in. This is an overwhelming topic and if you have brain fog on top of everything else, it's a bit daunting. I was trying to keep it simple. Each of us has our own preferred method of taking in information and I'm sure some will find the links you provided useful as well. Cheers.
 

Bluebell

Senior Member
Messages
392
"Just tell me what to take and when to take it." One click, one protocol

There are several different methylation protocols that have been created and that are used by people on this site, and Dr. Lynch's is just one of them (and his would likely not be in the top 3 protocols that are most followed here). This variety of options and methods is critical for newbies to understand.

Even if someone has brain fog, he/she should do a little research before starting methylation in order to understand the various options and cautions, because it can have dramatic effects on the physical and mental state, even though it's based on "just over-the-counter vitamins" etc. Dr. Rich van Konynenburg said that people undertaking methylation really should be under the care of a medical professional, and that is sound advice, especially if they have so much brain fog that they can't do some studying of the issue beforehand.

The C677T mutation is just one of many potential genetic results, and I'm sure Dr. Lynch would agree that his recommendations for people who definitely have that mutation would not necessarily be appropriate for all people regardless of whether they have it or not.

Even for people who know for sure they have that mutation, there can be variation in their specific needs and physical responses to methylation practices -- as Dr. Lynch wrote on that link, "I want to make it absolutely clear that while the MTHFR C677T mutation may be common across a number of individuals, the outcome of supplementing with various nutrients can vary tremendously due to other genetic defects, dietary and lifestyle choices and environmental exposures."

One example of a concern that must be understood before beginning methylation is the potential of incurring a potassium deficiency. Hypokalemia from not having enough potassium when ingesting the other methylation supplements can be serious, even life-threatening. However, Dr. Lynch does not even talk about potassium in that article -- it is only in the reader comments below the article, on June 14, 2013, that he says that extra potassium should be taken in this particular protocol.
 

CFS_for_19_years

Hoarder of biscuits
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2,396
Location
USA
Bluebell, I appreciate your thoughtful comments. I was hoping to give readers another option they might find useful.
 

Bluebell

Senior Member
Messages
392
Bluebell, I appreciate your thoughtful comments. I was hoping to give readers another option they might find useful.

I am sorry if I sounded short-tempered earlier, CFS_for_19_years.

I absolutely am confuzzled by methylation! That's why I collected so many links about it.

I have been on Dr. Benjamin Lynch's site these past few minutes and just saw this quote from him:
"My point: There is no set MTHFR protocol for anyone.
Genetics, lifestyle, diet, medications all play a role in how much methylfolate and methylcobalamin are needed – and these amounts can change daily as well.
Finding a doctor that understands this is critical – or you will have a difficult time regaining health – and maintaining it."

from: http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/
-----

I am not a health professional and I am only starting out on methylation myself. Given those caveats -- to me, it seems that the simplest and the most low-key protocol to try, if a person doesn't know much about it, and especially if he/she doesn't have the genetic testing done yet, and if he/she doesn't have a doctor to guide him/her, is Dr. Rich van Konynenburg's:

Dr. Rich van Konynenburg - Revised Simplified Methylation Protocol (August 25, 2012 Revision)
[Note that this apparently was his last version of his protocol before his untimely death] http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

This protocol is further explained in simple terms by his research partner, Dr. Neil Nathan:

Dr. Neil Nathan
Q&A on the Simplified Methylation Protocol - article
http://www.prohealth.com/library/showarticle.cfm?libid=16338

Dr. Neil Nathan
What is the Methylation Protocol - article
http://www.gordonmedical.com/unrave...ess/what-is-themethylation-protocol/#more-323

Dr. Neil Nathan
Supplements in his methylation protocol - article
http://www.gordonmedical.com/unrave...update-on-the-methylation-protocol/#more-1958
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
to me, it seems that the simplest and the most low-key protocol to try, if a person doesn't know much about it, and especially if he/she doesn't have the genetic testing done yet, and if he/she doesn't have a doctor to guide him/her, is Dr. Rich van Konynenburg's:
Rich advised that a person should be under the care of a doctor when doing his protocol as some people can have rather extreme reactions to it.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
Being under the care of a doctor is a great idea but I think in the real world ,given the state of the medical community and their lack of knowledge about many of the things we discuss and tackle here on PR is the main reason PR even exists......not to mention that for a lot of people even if they are lucky enough to reside in a city where they have access to a doctor knowledgeable enough the cost is quite often prohibitive and insurance does not cover most of it.................so thats why PR is a god send for most of us who have decided to go it alone and take charge of treating ourselves.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
If we all had doctors to guide us we wouldn't be spending so much time here. Bluebell, you didn't come across as short-tempered at all. Maybe in the future there will be a thread devoted to people trying Dr. Lynch's protocol. I think each person needs to decide on their own which protocol makes sense to them. If they have a doctor to guide them they are indeed fortunate.
 

Bluebell

Senior Member
Messages
392
Rich advised that a person should be under the care of a doctor when doing his protocol as some people can have rather extreme reactions to it.

Yes, I had already written that, 3 posts above your post: "Dr. Rich van Konynenburg said that people undertaking methylation really should be under the care of a medical professional, and that is sound advice, especially if they have so much brain fog that they can't do some studying of the issue beforehand."
 

Bluebell

Senior Member
Messages
392
Maybe in the future there will be a thread devoted to people trying Dr. Lynch's protocol. I think each person needs to decide on their own which protocol makes sense to them.

You can start such a thread, if you want to!

(Maybe you were trying to do that with this thread....
Are you currently doing his protocol?)

It's my impression that people here do Freddd's, Rich's, and Yasko's protocols the most.

Because Dr. Lynch has his own site about MTHFR (really it's the most complete one out there, especially for C677T), and each post he publishes has an active comments area which he sometimes participates in, I expect that most people following his protocol rely on his site for their information and discussion, because that's where the action is.

I see some screennames from PhoenixRising which are also on Lynch's site, and PhoenixRising is mentioned sometimes in the comments there.

I don't have health insurance or a job or extra money to spend on medical care, but even if I did, I am pretty sure I would not be able to find a doctor in my area who would know about any of this stuff, or be willing to learn about it.

If it did not seem to be a key part of my health problems, I wouldn't get into trying methylation on myself. But my genetic results are clear on the MTHFR mutations and a lot of my symptoms match. I can't not try it.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Bluebell, I'm not on Dr. Lynch's protocol yet, but it will be the next one I try. I tried one of the protocols here and became worse, so I stopped and reassessed. I've done a ton of reading here and on Dr. Lynch's site. I can find reasons to support each protocol.

I wasn't trying to start a thread devoted to people trying Dr. Lynch's protocol. If someone wants to, I agree with you, then they should. I was merely trying to let people know that there was another protocol available.

Maybe it's me, but it seems there were so many updates to a protocol on here that it left me wondering if I had the most recent version. There were times when I thought I had the most recent version but I was surprised to find yet another modification to the technique and/or supplements. I thought that if I was having that experience, then there must be others going through the same thing. Supplements that are no longer recommended (Jarrow B12 and B-right) are still posted as being part of a protocol. Unfortunately, that's the way a forum works.

Bluebell, two of the links in your post #7 don't work. You may want to check them.
 

Bluebell

Senior Member
Messages
392
Maybe it's me, but it seems there were so many updates to a protocol on here that it left me wondering if I had the most recent version. There were times when I thought I had the most recent version but I was surprised to find yet another modification to the technique and/or supplements. I thought that if I was having that experience, then there must be others going through the same thing. Supplements that are no longer recommended (Jarrow B12 and B-right) are still posted as being part of a protocol. Unfortunately, that's the way a forum works..

I expect you mean Freddd's, since it's pretty clear what was the last version of Rich's protocol. (And I think Jarrow was only a Freddd supplement.) I agree with you that Freddd's protocol feels hard to pin down, to the newcomer who is presented with all the different threads about it. There is more of a circuitous way of communicating about that protocol, which threw me for a bit of a loop when I was trying to wrap my head around it.

That doesn't have to be the way a forum always works. But I know what you mean.

PR's memorial section to Rich actually seems to show quite old material (old versions of his protocol) but not his more recent work, which confused me when I was first trying to learn about it. I might email them about that.

Bluebell, two of the links in your post #7 don't work. You may want to check them.

Thanks for letting me know!

The first two worked for me just now. The third one didn't work.

Try this for the third one:
http://www.gordonmedical.com/unravelling-complex-chronic-illness/update-on-the-methylation-protocol/

It looks like they have taken the numbers off the ends. I will update my list of information (the next time I do an update) accordingly.

Here is the second one without the number on the end:
http://www.gordonmedical.com/unravelling-complex-chronic-illness/what-is-themethylation-protocol/

---
By the way, I didn't realize Dr. Nathan had said that all of the supplements must be certain brands only and purchased from healthcare providers only until I read his article again tonight. That was not Rich's view on all of them.

Also, Rich went with lecithin as the 5th one.

The methylfolate can be the inexpensive, over-the-counter Solgar Metafolin: "Solgar Metafolin could be used instead, and it is probably less expensive, but it also contains additional additives, including mannitol and magnesium stearate, which may cause sensitivity problems for some people". -Rich (from reference below)

I prefer Rich's description of the protocol: Revised Simplified Methylation Protocol (August 25, 2012 Revision) http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/