Those who have stopped methyl supps due to bad reaction, how long did it take to get back to normal?

[jnwp]

Despite having high hopes, and getting off to a good start initially, the methylation protocol hasn't been a good experience for me, as I outlined here. I'm not sure what happened. Methylation seems like a bit of a minefield that's hard to navigate, with many different theories about what causes various symptoms. And on top of that, I complicated things further - the initial burst of energy I had led me, against my better judgment, to go back to the gym for the first time in years. After four trips over the course of about two weeks, I got really, really, really tired like I haven't been in years and I haven't felt right since (this was August).

It's undeniable that the strain of the weightlifting was the immediate trigger of the initial symptoms, but I expected to bounce back fairly quickly as I have in the past. I didn't, though, and have just felt unusually fatigued since then, but inconsistently. Plus some other symptoms popped up or worsened since then, leading me to wonder if the methylation supps played a role in all this. So I spoke to two doctors, one who deals specifically with methylation, and both said to stop them (one said it sounded like overmethylation). That was four weeks ago; I'd say overall I'm feeling better, but the symptoms haven't fully gone away and I'm starting to worry, because I really want this to correct itself and get back to normal, otherwise I've got a much longer and more complicated recovery ahead of me at a time when I've got a lot going on in my life. But on the other hand, I don't know about how long it takes for imbalances/roadblocks in methylation protocols to correct themselves.

Those of you who ended up having bad reactions for whatever reason - methyl trap, potassium, just general overstimulation - how long did it take you to get back to a stable "baseline?" Did you have to do anything besides simply stopping the supplements, like using niacin?

 

[Sherpa]

Took me up to 10 days to get back to from just 'overmethylation' (no exercise involved)
Took me up to 3 - 4 weeks to get back in the gym after overtraining from overconfidence... or too much emotional stress

you and I likely have different illness / causes / imbalances... so YMMV

if you go to the gym, go back VERY slowly. I mean start with 5 lbs dumbbells for a couple of weeks, then move up to 7.5's.. then after 3 weeks on those, try 10lbs.

Forget the major bar workouts like squat, dead, bench

 

[jnwp]

Took me up to 10 days to get back to from just 'overmethylation' (no exercise involved)
Took me up to 3 - 4 weeks to get back in the gym after overtraining from overconfidence.

you and I likely have different illness / causes / imbalances... so YMMV

if you go to the gym, go back VERY slowly. I mean start with 5 lbs dumbbells for a couple of weeks, then move up to 7.5's.. then after 3 weeks on those, try 10lbs.

Forget the major bar workouts like squat, dead, bench

Hey Sherpa,

Good to hear from you. I've followed your posts here and on CureZone for a couple of years; you were one of the main inspirations for me as a "success story." Our situations actually track pretty closely: I started out treating myself as an adrenal case, and managed to get to a high functional level, but never could handle any sort of rigorous exercise. Your posts got me interested in methylation.

I pushed way too hard at the gym. I was going very high weights, albeit with very low reps (5 or less) and lots of rest. Just arm and shoulder work. I figured if I avoided lactic acid buildup I might get away with it. It was stupid and I feel a bit embarrassed admitting it, but I thought I could do it. I was getting some signs that my body wanted to stop, but I pushed through it because I had bursts of energy, I thought I'd adjust, or just bounce back. I'm really worried now that I "broke" something in the process, but my symptoms now are inconsistent, and I still have times where I feel fine. It's not at all like the symptoms I had when my adrenals were struggling years back. I'm not sure what's going on.

I'm still hoping that, now that I'm off the supps, a lot of the specific symptoms will go away and I'll get the energy I had six months ago back. I was in a good place and am really mad at myself for pushing. Hope you're feeling well.

 

[Sherpa]

@jnwp I am sure you can get back. I have had many ups and downs but as long as I keep a circadian rhythm (to to bed early), eat clean (low lectin), and keep my exercise moderate (avoid excess or egotistical old habits) I am functional, reliable and sociable.

Some things that can fix post-exertion malaise:

- black coffee (tempoerarily)
- d-ribose
- magnesium enema
- waxy maize (rapidly absorbed carb that increases glycogen in muscles)
- liposomal resveratrol
- Niagen - awesome for me

 

[jnwp]

Thanks, @Sherpa . I've tried ribose and did have good results re: energy, but also got lightheaded. I am living in Tokyo and dating a wonderful woman, so I'm still stuck in that old "student" lifestyle. I was getting away with it before, but it's almost certainly slowing my recovery down now. I'll be coming back to the states for 6 weeks next month though and I plan on just resting. Will look into some of the others, especially niagen.

It's great hearing from people who are living fulfilling lives despite having to deal with these issues. Exercise was the only piece that was missing for me, I'm still excited at the idea of getting it back but have to approach it much much more carefully.

 

[Mary]

@jnwp - have you tried taking potassium? This is a HUGE issue for many of us. As methylation starts up, cells start to divide more rapidly, increasing the need for potassium, often in a big way and very suddenly - inducing potassium deficiency, symptoms of which can include palpitations, muscle aches, spasms, severe fatigue (my worst symptom).

I had to titrate up to 1000 mg. of potassium a day after a couple of days on methylfolate, and have been taking almost that much daily for 6 years every since. I also drink a glass of low-sodium V8 almost daily.

I learned I had had symptoms of low potassium prior to starting methylfolate, only I never knew what it was - it was a pretty bad fatigue, unrelated to PEM - which would come and go. Anyways, I never get this any more since I supplement with potassium gluconate. There's a very interesting explanation by richvank about potassium and ME/CFS and why we often have trouble with it. Though low potassium can hit anyone starting methylation, actually I think it's almost a given that it will happen and that's why Freddd stresses it so much. I think it's related to refeeding syndrome. See: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422
http://forums.phoenixrising.me/index.php?threads/increase-in-potassium-demand.19063/#post-291491
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

 

[jnwp]

@jnwp - have you tried taking potassium? This is a HUGE issue for many of us. As methylation starts up, cells start to divide more rapidly, increasing the need for potassium, often in a big way and very suddenly - inducing potassium deficiency, symptoms of which can include palpitations, muscle aches, spasms, severe fatigue (my worst symptom).

I had to titrate up to 1000 mg. of potassium a day after a couple of days on methylfolate, and have been taking almost that much daily for 6 years every since. I also drink a glass of low-sodium V8 almost daily.

I learned I had had symptoms of low potassium prior to starting methylfolate, only I never knew what it was - it was a pretty bad fatigue, unrelated to PEM - which would come and go. Anyways, I never get this any more since I supplement with potassium gluconate. There's a very interesting explanation by richvank about potassium and ME/CFS and why we often have trouble with it. Though low potassium can hit anyone starting methylation, actually I think it's almost a given that it will happen and that's why Freddd stresses it so much. I think it's related to refeeding syndrome. See: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422
http://forums.phoenixrising.me/index.php?threads/increase-in-potassium-demand.19063/#post-291491
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Hi @Mary ,

Thanks for the reply. Very interesting! Potassium had been mentioned before - do you know if bananas are a valid source of it? That's the only place I've gotten it aside from my multivitamin. I can't say the bananas did much re fatigue or the other symptoms, but then, I don't know if that's a helpful source or not, or how fast-acting. I haven't taken any potassium supps. I did have terrible, terrible spasms in my arms for awhile, but those stopped. I'll also note that weird stuff started well before the weight lifting, namely when I started ADB12 and got bizarre itchy rashes on my finger, diarrhea, cough and a swollen lip. Freddd does list some of these under hypokalemia, but not all, and again, I didn't notice a huge benefit from eating bananas.

It's interesting you say your fatigue was non-PEM related, as that seems mostly true for me, and is quite puzzling, though they're clearly connected. It really started 2 days after my last workout, I was heading to the airport for a trip and was just totally exhausted. Wasn't feeling many PEM symptoms, but I was exhausted with a capital X. Couldn't stay awake if I stopped moving. And yes, heart palpitations came on, too. Very scary feeling. A few weeks later, I pushed too hard again doing stupid 28-year-old stuff, and the next day was totally wiped again. The cramping in my quadriceps started after that. Does this match with your experiences? Did you have issues waking up in the morning, feeling like your body just wanted more rest? And did you feel like you had a hard time regaining the "wind," or recharging upon rest like you would normally? These are some of the main issues I'm still facing. Sorry for all the questions, but your post intrigued me!

 

[Mary]

Hi @Mary ,

Thanks for the reply. Very interesting! Potassium had been mentioned before - do you know if bananas are a valid source of it? That's the only place I've gotten it aside from my multivitamin. I can't say the bananas did much re fatigue or the other symptoms, but then, I don't know if that's a helpful source or not, or how fast-acting. I haven't taken any potassium supps. I did have terrible, terrible spasms in my arms for awhile, but those stopped. I'll also note that weird stuff started well before the weight lifting, namely when I started ADB12 and got bizarre itchy rashes on my finger, diarrhea, cough and a swollen lip. Freddd does list some of these under hypokalemia, but not all, and again, I didn't notice a huge benefit from eating bananas.

It's interesting you say your fatigue was non-PEM related, as that seems mostly true for me, and is quite puzzling, though they're clearly connected. It really started 2 days after my last workout, I was heading to the airport for a trip and was just totally exhausted. Wasn't feeling many PEM symptoms, but I was exhausted with a capital X. Couldn't stay awake if I stopped moving. And yes, heart palpitations came on, too. Very scary feeling. A few weeks later, I pushed too hard again doing stupid 28-year-old stuff, and the next day was totally wiped again. The cramping in my quadriceps started after that. Does this match with your experiences? Did you have issues waking up in the morning, feeling like your body just wanted more rest? And did you feel like you had a hard time regaining the "wind," or recharging upon rest like you would normally? These are some of the main issues I'm still facing. Sorry for all the questions, but your post intrigued me!

Bananas are a source of potassium, but not very much. I was unable to get the potassium I needed from food alone. That's been the experience of many here. The RDA for potassium is 4500 mg so taking 1000 mg is 25% of the RDA, not a huge amount.

I still do have PEM - it's just this particular fatigue which started after taking methylfolate was not PEM - it was due to low potassium. So your exhaustion and heart palpitations could easily be due to low potassium, as well as your muscle cramps. There's one way to find out.

If you don't want to try a potassium supplement right away, then I suggest you eat a lot of bananas and get some low-sodium V8 and drink a lot of that, it's high in potassium, and eat other foods high in potassium. If you start to feel better in a couple of days, you'll have your answer, though it still may not be enough. You still might need a supplement. If you do take a potassium supplement, don't take a huge amount all at once - take 200 mg or so in divided doses - what I did was start with 600 mg the first day (in divided doses) and by the end of the 2nd day had worked up to 1000 mg, and that's when my symptoms started to abate. and I still have to take it, but it's no problem because it's cheap and I need it.

About your rash and other symptoms - I didn't get those, but I think on your other post someone mentioned perhaps a folate deficiency? I would go back and check out what they said.

 

[Sherpa]

@jnwp I strongly advise most people not to take chemical potassium. I have had "emergency room" type negative reactions to due hyperkalemia from taking it, while following "Freddd's protocol" which influences many posters on here. I am not a fan of Freddd's protocol.

If you do take chemical potassium (not recommended) follow the directions on the label EXACTLY and don't exceed. Don't follow an internet post. IT can burn a hole in your stomach or send you to the ER. And yes, sure, in some cases, it can 'hit the spot' and be very healing.

Yes potassium can get low and it can be a problem. What Mary says is true and it is for many people.

I recommend getting it from food - eating plenty of vegetables... or in a pinch eating some potato chips, a normal serving of coconut water.

That way is almost always sufficient and very hard to overdose.

If you are really low, just eat some chips / V8 / coconut water. No problem there.

 

[caledonia]

Your symptoms do sound more like low potassium than overmethylation.

My doc had me try to get potassium from food first. That didn't work for me. For some reason my body was not processing it.

Now brand potassium gluconate powder works well for me and several others on here. I took 3000mg per day (divided into 4 doses) for 4 years. Now I only need 50mg per day.

I have heard of a few people like Sherpa with stomach issues from potassium supplements. Maybe two or three people total.

So it sounds like it would be best to do coconut water, potatoes, etc. first and see if that helps.

Then if not, try the Now potassium gluconate, but start low to test for tolerance first. There will be a sweet spot where you feel the best, not too much or too little.

 

[Seven7]

I remember slow release b1 or was it b2 for overmethilation and that did it for me. If you read Freddd thread on b12 he explains symptoms and what to do if it happens.

 

[Oberon]

I continuously advise some serious caution in pursuing methylation protocols. I have permanent negative effects which I'm unsure if it's from too much folate, b12 or potassium destroying my gut. I wound up in the hospital a few times over it. I believe in all likelihood it was the potassium that did me in.

Since January I now have what appears to be permanent dysphagia, gastroparesis, reflux, and I can barely eat a meal without regurgitating it for hours after eating. I am also noticeably more fatigued from this whole ordeal.

Methylation may help or may not help but I strongly advise the proceed with caution and Caledonia start low and go slow approach if you are going to keep pursuing it. You see a lot more information about Fredd's much more aggressive protocol on Phoenix Rising.

He seems like a very smart guy and has spent countless hours researching and putting out information to help others and it clearly has helped many people on these forums. With that said in many regards methylation treatments are still more of a pseudoscience than actual science. There is not nearly enough research to confirm the efficacy and appropriate dosages for treatment and what works for one may have no impact or even harm others like in my case.

 

[jnwp]

Appreciate everybody's input. This kind of goes back to what I was saying about methylation being a bit of a minefield, and never knowing what's going to happen if you move in one direction or the other. Thankfully forums like this exist for support, but as @Sherpa and @lakesarecool said you have to be cautious.

@Mary and @caledonia my symptoms confuse me a bit as there seems to be a lot of overlap. My thinking was that whether it's potassium, overmethylation, undermethylation or anything brought on by the protocol, it ought to get better by stopping the supps. I think that might be happening, but it's been slow going. Some symptoms (cough, tinnitus, sweating) seem notably better, but I've still been waking up tired, feeling tired, having cramps, occasional dry eyes etc.

I'm happy to report though that today was great. I did follow the middle-of-the-road advice and ate a potassium-heavy breakfast. Not sure if that's what deserves the credit, but after I finished class I spent five hours bumming around Shinjuku (downtown Tokyo) and felt very few symptoms (stomach's been upset a lot lately, but I've had those symptoms many times before - anyone else run into this when stopping supps?). One of the best "runs" of good energy I've had since this started, maybe the best overall. There have been others, though, so I won't get my hopes up too too high just yet. But a healthy moment is always a good moment. I've had quite a few recently, and am hoping I can turn that feeling into the norm again. If I can, I'll be the happiest guy alive.

 

[Mary]

@jnwp - yes, your symptoms overlap, there's probably not one item alone causing your issues. But potassium is huge, I can't stress that enough. And I've found it's best to try to address one thing at a time; otherwise it's too confusing to know what is doing what. So it's good you ate a potassium-heavy breakfast, I'd keep loading up on potassium and see what happens.

And no, your symptoms won't necessarily disappear overnight, especially if potassium is involved. Your fatigue and cramps are textbook symptoms of low potassium (though of course can be due to other causes). The only way to know for sure is to take potassium (in food or otherwise) and see what happens. Read the links I provided. Low potassium is very often implicated in ME/CFS so you may just need to pay attention to and increase your potassium intake, regardless of whether you do the methylation protocol or not. The main caveats with supplementing with potassium are take it in divided doses - don't take a huge amount all at once, and, if your kidneys are bad, it's not a good idea. But most of us don't have failing kidneys.

FWIW, most of us have learned through trial and error what is going on with us. There is no easy way to know.

I'm glad you're feeling better! (happy thanksgiving!)

 

[caledonia]

My thinking was that whether it's potassium, overmethylation, undermethylation or anything brought on by the protocol, it ought to get better by stopping the supps. I think that might be happening, but it's been slow going. Some symptoms (cough, tinnitus, sweating) seem notably better, but I've still been waking up tired, feeling tired, having cramps, occasional dry eyes etc.

Regarding the slowness of getting back to normal after stopping methylation supps - once methylation gets cranking, it keeps going for quite awhile even without any more inputs. It depends on how much you dosed, but it could be days, weeks or even months.

I have materials in my signature link which explain all of this. The Methylation Made Easy videos shows a cartoon of runaway train being stopped by Superman. This was the simplest most graphic way I could come up with to warn people about how methylation gets cranking and it's hard to stop.

Also check out my document "Roadblocks to Successful Methylation". I think in there I give a list of my low potassium symptoms, many of which are similar to yours.

So your symptoms are still sounding like low potass to me. The high potass breakfast helping is another clue. It sounds like you may be able to just do food to get the potassium you need.

The nicotinic acid form of niacin will soak up methyl groups and slow methylation. So maybe you need both niacin and potassium for the quickest resolution.

 

[jnwp]

Hi all - it's been about a month now, so I figure it's time for an update. I've been going heavy on potassium as suggested here, and without question it appears to be helping. I was much more active my last few weeks in Tokyo, and I noticed a return of that "get up and go" energy (the "dance test" as I call it) that's always been my main indicator of overall wellness. Moving out and returning to Florida went well, and I even had a stretch of a few days where I noticed basically no symptoms at all.

However, I don't think I'm out of the woods yet. For the past several weeks, I noticed that while my energy would be better overall, I would still tend to wake up feeling lousy, with a stiff lower back, low energy, et cetera. And the past several days - possibly because I wasn't paying attention to potassium after I got back - some symptoms have returned. I've been sweating profusely again (it's Florida, but still) and having episodes of tiredness that doesn't get better with rest. Coughing and sneezing have gotten a bit worse, a few heart palps, BO is more noticeable and I feel some swelling and a bump under my armpits.

I know there's ups and downs with methylation, but I've been off the supps for 2 months now and so I'm just a bit concerned. These symptoms have to be related, and most seem to point, to my thinking, towards my immune system trying to deal with something nasty - but what? Food sensitivities? Is my methylation system still pulling crap out of my body that it can't deal with? I really don't know.

The symptoms are intermittent, and upping my potassium again seems to be helping. But I'm still not entirely sure what's going on. Appreciate any input from others, and happy holidays to all.

 

[caledonia]

Waking up not feeling rested, and stiff lower back, for me is restless legs during sleep. Which sounds like low electrolytes. Also the heart palps. Magnesium could also be helpful. The symptoms of mag and potass deficiency are similar.

Not sure about the flu like symptoms - sweating, coughing/sneezing, armpit lymph nodes a bit swelled?

Stinky BO probably goes along with sweating.

Sneezing makes me think of allergies.

 

[jnwp]

Hi caledonia. Interesting thought about the restless legs. I hadn't thought of that. My bed definitely is a mess when I wake up - more so than usual. I'd been taking cal/mag together, but stopped when I moved back here. Hmm...

I am positive that there is an allergic or immune component to all this. When I started ADB12 in July (after 2 months of low dose MB12), within hours I had an immune/allergic response - red inflammation on my cuticles. I had what I thought was food poisoning a few days later, and then a cough that lasted for weeks. And the other symptoms - BO, lymph swelling, started within about a month of starting methylfolate.

I should've stopped, but I wrote a lot of this off as detox, and it does seem to me like my body is still fighting something. This tiredness is similar to what I felt when I got a really bad cold/flu years back. I'm just having trouble figuring out why, if the protocol caused it, I'm still battling it two months after stopping all my supps. So frustrating - but I know I've been making headway.

 

[erinnnrisinggg]

@jnwp I second many of the experiences here with potassium. I started methylation supplements with a doctor in March 2016 and it took months for me to normalize. Then I tried adding ADB12 in September 2016 and I'm still having to supplement with a good amount of potassium (600mg - 800mg per day spread throughout the day) alongside a high potassium diet even though I stopped the ADB12 as soon as I crashed. If I don't keep my potassium up, I get major fatigue, full body muscle spasms, heart palpitations, insomnia etc. I *think* that sometimes eating leafy green vegetables makes all of these symptoms worse possibly because they contain folate? Niacin does seem to work some nights, especially when my legs get restless. I ended up in urgent care twice in the past year having to get an IV for potassium. As people have noted in other forums, I tend to have low potassium symptoms anytime my results are under 4.2 even though it's still considered "in range."

As @Mary mentioned, I think I've been having a potassium issue for a while but methylation really brought it to the forefront. Hope it all stops for you soon! Good luck!

 

[jnwp]

Sorry for the late reply @erinnnrisinggg - yes, I find that I too need to continue taking lots of potassium, mostly as coconut water. No question it helps. I'm still taking niacin occasionally too.

To give an update - over 3 months since stopping all supps and I'm stil in the process of a full recovery but not quite there yet. More and more moments of feeling "normal" - even entire days - and the lows are nowhere near as bad as before.

However, I still feel like I'm missing something here. After three months with no supps I would expect to not just be recovered, but so far beyond this episode that I don't even have to think about it anymore. Clearly, though, something went really wrong with my attempt at self treating methylation. My suspicion originally was it was my unusually high ratio of adb12 to mb12 - about 4 to 1. I'm starting to lean towards that conclusion again.

Basically, I was doing totally fine until adb12. And then there were a bunch of weird reactions, but I pushed through and they seemed to go away. I kept upping it until I was taking the whole 8.6mg every other day (so let's say 4 per day), vs only around 1 mg daily of mb12. I knew this was not the norm, but I had my reservations about high dose mb12 and was under the impression that adb 12 was totally safe, but in retrospect this may have been a huge mistake. And since I was doing other things at the same time - more folate, and then the gym - I attributed the extreme fatigue to the latter. But reviewing it in my mind, I remember some fatigue coming on just in the first few weeks of adb12. And I was taking the megadose of adb12 for about 2.5-3 months before my symptoms got so bad I had to cut back and then just stop everything . So maybe I messed something up, and my body is still trying to repair itself.

I'm not sure what to do next. This is just a theory, and besides, I do seem to be getting better just by taking potassium and no methylation supps. But on the other hand, something has always felt "off" about my recovery and I'm wondering if it really was as simple as too much adb12 and not enough mb12. I could try taking a lowish dose of mb12 again (1mg) and see if it helps - I did fine at that dose before - or try something else, like more niacin, or just wait it out. I'm not sure. Opinions welcome, as always.