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Is methyl protocol forever?

Messages
49
I have been so engrossed in getting my protocol ironed out that it never occured to me to wonder if this sort of supplementing is a forever thing? Will I have to supplement for the rest of my life or will my methyl cycles "take over," eventually?

For me, first it was suspected I had a b12 def. due to many years as a vegan, so I supplemented.. and then I started digging more and found out I am compound hetero for the two big deal MTHFR's. So, folate is a problem too. But I guess I am confused still... am I B12 deficient? Can you be one without other? Can these things correct over time or can I look forward to taking a gazillion supplements until the end of time?
 

Red04

Senior Member
Messages
179
I believe the short answer (for now) is yes. The supplements are needed in most people indefinitely. It's not a "cure" so to speak. More like permanent remission as long as the supplements are kept up.

My wife has been in "permanent remission" for 2+ years and if she goes without supps for a week, the symptoms come back. She is far less sensitive to changes in dosages and skipping dosages and accidental folic acid and all that, so it has "stabilized" so to speak.

It is scary thinking about legal changes regarding supplements, formula changes (like jarrow), and any major catastrophic/economic things you hear about. Similar to what anyone dependent on medication goes through I guess.

If someone healed and stayed off of supplements, I would certainly like to know how.
 
Messages
49
That's interesting how it never occurred to me that I will be supping for the rest of forever.. until today. Funny how the most obvious things are slow to sink in, huh?

I keep reading about this Jarrow change, but that is still what is recommended on the page where I found Fredd's protocol. I am taking Jarrow.. should I reconsider? Thanks for your input.
 

Red04

Senior Member
Messages
179
Yes, the Jarrow is considered ineffective by most people here. I don't know how widespread the ineffectiveness is, but it's just not worth messing with. Switch to Enzymatic Therapy Mb12. As with all the supplements, there are a lot of moving parts and variables. So, it is best to put all the odds in your favor when getting started and use what is working for most and eliminate what is not working for most.

The sticky at the top on Freddd's protocol needs updated. Maybe I'm imagining this but I think he said he was working on a comprehensive update to include some tweaks and titration stuff and that may be why the old data is still up.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I think it's mainly only the methylcobalamin that's an issue. I don't understand all the details of the methyl trap, but it would probably be a good idea to order some of the Enzymatic if you haven't already because taking methylfolate without B12 could cause problems for some people.
 

Skyline

Senior Member
Messages
140
Location
Bangkok, Thailand
I would say that:
1. If you do not resolve the underlying cause(s) of 'oxidative stress' that caused the methylation partial block/ crash you need to keep up with methylation supplements to provide your body with enough resources to keep the oxidative stress at bay.

2. In some cases fixing methylation may enable you to detox the causes (viral, metals, molds, bacterial). I think this is most likely if you are in a different situation from the event where you got hit (overwhelmed by oxidative stress). For instance if part of the reason for your initial crash was high emotional / work stress and neither of these are present when you get your methylation running again - you may be able to recover simply through methylation.

3. For some people with certain mutations like MTHFR in the methylation pathway you may have to supplement for life or adapt your diet/ nutrition to compensate. This would have to be tested for based on your mutations and specific blockage biomarkers like homocysteine that you can monitor.

For most people, if you tackle the sources of oxidative stress and resolve them, and get methylation running back within reference range (reduced glutathione status replenished etc.), and have a good diet with the necessary folates and Bs you should be able to drop the methylation supplements.

Personally, I'll be testing up until everything is cleared and back to normal and then test while on a maintenance diet (without supplements) to see if I can keep methylation running optimally without supplements. That should be the end goal. Back 100%.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I have Lyme disease. From what I've read, it's very hard to completely eradicate this illness. I've made recoveries only to relapse again. I haven't treated Lyme directly, but I don't know if even that will be enough so I plan on taking supplements for my entire life. There are so many causes of CFS though so I suppose other people might be able to reduce their supplements as Skyline suggested. One thing to consider though is that we're not getting any younger and even so-called healthy people might need supplements as they advance in age. Maybe I'm reading too much Life Extension magazine which is meant to sell supplements to aging individuals, but I think there's something to be said for preventative medicine even if we're "cured" of CFS. That includes taking at least some supplements, but also exercise, eating healthy, avoiding toxins, reducing stress, and getting enough sleep (and rest during the day).
 
Messages
49
I see. I guess I should mention that I don't have CFS. I found this site when I was searching for information on methylation and am extremely happy I did! I have the 2 MTHFRs that matter, compound hetero. I am also apparently prone to viral infections which I have mentioned in a few other posts. I am only 30 and had a shingles outbreak about 7 months ago, which actually kicked off the numbness and tingling in extremities that eventually led me to a Naturopath who then decided that my moderately elevated serum b12 was in fact a functional deficiency. I started supplementing with B12 and folate back in late January, felt better within 2 weeks.. was doing amazingly awesome until I ran out of supplements. Not thinking that I necessarily needed to take them since I was feeling better I was in no hurry to get replacements. Well.. that meant that in a matter of a week or two I was getting the tingling and numbness again. When that started back up, I also dug into my 23andMe, figured out that I have some relevant SNPs that explain my issues further and got back into supplementing.

So, now, it is just a matter of figuring out the supplement cocktail that works best for me and going fourth! I don't have a problem supplementing for the duration.. And in fact plan on getting pregnant in the next year so maintaining folate supplements specifically with my SNPs is probably a good idea. I have read horror stories of women who had several miscarriages, only to find out later they were compound hetero on the MTHFRs just like me.

Anyhow.. thanks for all the info!
 
Messages
49
I would say that:
1. If you do not resolve the underlying cause(s) of 'oxidative stress' that caused the methylation partial block/ crash you need to keep up with methylation supplements to provide your body with enough resources to keep the oxidative stress at bay.

2. In some cases fixing methylation may enable you to detox the causes (viral, metals, molds, bacterial). I think this is most likely if you are in a different situation from the event where you got hit (overwhelmed by oxidative stress). For instance if part of the reason for your initial crash was high emotional / work stress and neither of these are present when you get your methylation running again - you may be able to recover simply through methylation.

3. For some people with certain mutations like MTHFR in the methylation pathway you may have to supplement for life or adapt your diet/ nutrition to compensate. This would have to be tested for based on your mutations and specific blockage biomarkers like homocysteine that you can monitor.

For most people, if you tackle the sources of oxidative stress and resolve them, and get methylation running back within reference range (reduced glutathione status replenished etc.), and have a good diet with the necessary folates and Bs you should be able to drop the methylation supplements.

Personally, I'll be testing up until everything is cleared and back to normal and then test while on a maintenance diet (without supplements) to see if I can keep methylation running optimally without supplements. That should be the end goal. Back 100%.

Hi there, I replied a bit below with my story... as I don't have CFS, but do have some viral issues. Additionally I am also compound hetero for MTHFR C66 and the other one that matters that I am currently mind-blanking. So, what tests are you suggesting be done in order to track progress?
 

Red04

Senior Member
Messages
179
For most people, if you tackle the sources of oxidative stress and resolve them, and get methylation running back within reference range (reduced glutathione status replenished etc.), and have a good diet with the necessary folates and Bs you should be able to drop the methylation supplements.

Personally, I'll be testing up until everything is cleared and back to normal and then test while on a maintenance diet (without supplements) to see if I can keep methylation running optimally without supplements. That should be the end goal. Back 100%.

Are there a lot of people who have acheived this? I don't recall anyone having a major recovery and transitioning off of supplements. Also, neither of the protocols on here mention getting off of them. I agree that this would be a wonderful goal, I just don't know of it happening.
 

caledonia

Senior Member
Can you get off supps eventually? In theory, the answer is yes - basically as Skyline described it.

However, with those kind of SNPs and the toxic/nutrient depleted world we live in, you're in danger of relapsing. I think it would be prudent to stay on some minimal supps long term, as well as eating a nutrient rich whole foods diet, and practicing strict avoidance of toxins as well as some kind of regular detox, such as FIR sauna.

Thegiantess should stay on her supps for sure during the pre-natal period, pregancy, and post-partum/breastfeeding period. It would also be prudent to get your child's SNPs tested after he/she is born. If your child inherits MTHFR mutations, he/she has the potential to become autistic, so you would want to modify the vaccination schedule, keep your house toxin free, etc.