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

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Another bad day. Energy was OK, but I went for a walk and I was so hot, sweaty and dizzy, even in the Tokyo winter, that I almost had to stop and go home. Interestingly, after I sat down and had lunch the symptoms basically all went away. This might point towards one of the possible nutrient deficiencies that @erinnnrisinggg alluded to, but I have no idea which one it could be. I take a multivitamin that has a bit of everything in it. Been taking niacin too.

I don't know what to do. I think I need to reach out to some methylation specialists as I'm running out of moves. Going this alone was a big mistake and I'm presently wishing I had just quit while I was ahead instead of messing around with supplements I didn't really need.
One new thing that I've noticed since all of my methylation work, I get REALLY tired if I don't eat on time. That never happened to me before! Sweaty sounds to me like a little bit of hypoglycemia. Do you have a glucometer by any chance? They are great to have on hand so that you can test blood sugar before and after eating. In the U.S. we have them in drug stores/pharmacies, but they might be available for purchase online.

Pretty sure my doctor works with people all over the world since he does Skype consults. All you need is your genetic data from 23andMe and you can setup an appointment with him. His first session is $60 and follow-ups are $30 which is very reasonable in the U.S. .... however, the supplements are kind of expensive. This is his office and his name is Bob Miller, ND: http://www.tolhealth.com/

And here's a video explaining some of the work he does:
https://vimeo.com/user20863995/review/137064917/bd14c94e08

Good luck!!
 
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Don't feel bad about overdoing it when you (briefly) felt good - I'm sure many of us here have done the same thing. It's just so exhilarating to feel like a normal person again, that's it torturous not to run out and take advantage of it until it becomes too much. I think that's been a really tough lesson for both me and my husband - even during days of feeling better, we have to keep forcing ourselves to take breaks.

I never had any issue with any of the methylation supplements, but then I almost never react to anything (which can seem almost as frustrating as overreacting to everything!) but my husband tends to overreact. He had some trouble with methylation supplements, and we eventually narrowed it down specifically to P5P. Strangely, even though he's an overmethylator, he does fine with sublingual methylB12, and even with methylfolate (as long as he doesn't take extremely high doses for a prolonged period. However, that P5P really gets him - he is really prone to having an excessive amount of adrenaline in his system that doesn't seem to get broken down properly, and the P5P somehow reinforces this problem. Luckily, his bad experiences with it only lasted a couple of days at most.

Since you're not sure exactly what about the methylation protocol bothered you, have you considered getting the B vitamins in isolation (in the smallest doses you can find) and taking them individually to see which you tolerate and which you don't? Since you had that initial burst of energy, it makes me think that there's something in that mix that you really needed - the trick might be to figure out what that is and to continue taking it while avoiding what bothered you or at least to take it in tiny doses until you possibly eventually do tolerate it (though this might not happen).
 
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Hi guys - update time

So overall I've continued to improve. After the frustrating low point I was at when I last posted I bounced back and felt substantially better. It seemed like I was "sweating out" something in a sense. In any event, I got to enjoy my last few days in Tokyo with no real issues. And then, off to New Zealand where I spent a few weeks running all over the place, hardly any rest and no crashes. I was starting to think I was finally out.

Anyway, I moved into a brand new rental house a Few days ago. The idea was to avoid the old moldy shacks most students here live in. But something here seems to be irritating my sinuses as I've been coughing/sneezing/wheezing nonstop. Doctor says a viral infection but I'm not so sure. I'm highly suspicious this is tied somehow to the methylation supps as I had two similar, prolonged "respiratory infections" after starting adb12. But, it did happen once before then too, when I was using a detergent that was causing eczema. So clearly some immune issue at play. My overall energy level is holding up for now though.

@Basilico I suspect you are correct that methylation does offer some indications of the underlying issues here, hence the energy bursts. Oddly I still am having moments lately where my energy surprises me. Overall though it felt like I was taking one step forward and two steps backwards whilst on the protocol. Adb12 especially threw me off. I think the key going forward for me at least is professional supervision. Glad you and your husband are seeing good results though.

@erinnnrisinggg thanks for the recommendation, will keep that in my back pocket as that's quite cheap for any alternative practitioner (and I've seen a lot), far less a methylation doc. I'm currently scheduled to meet with a team of Aussie MTHFR docs over the weekend. Pretty expensive but it sounds like they have a lot of experience. I will have to look into the glucometer.

Hoping we can all get on with our lives and not think about this stuff anymore! Appreciate the support and the suggestions.
 
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Good luck at the doctors @jnwp! Keep us updated if you learn anything interesting. I spent a good bit of time yesterday learning about the importance of B2 in the methylation cycle (especially for B12 metabolism) as well and how sometimes it becomes one of the limiting reagents for people. Of course, other people mention how it made them worse ... such a delicate process. (if you search for B2 on this site there are some interesting discussions).

Interestingly, *some* people with CFS have a hard time getting "regular people sick" -- meaning they don't really pick up colds or the flu or at least they don't produce a robust immune response to them. However, after starting methylation and getting some energy back, people are able to mount an immune response. If methylation is kicking up your immune system, perhaps that could be related to the increased upper respiratory symptoms? Also, I do think B12 can sometimes exacerbate histamine reactions in people and wheezing/sneezing would definitely go into that category. Sounds like you'll be in good hands with the docs though! Hope it all continues on an upwards trajectory for you.
 
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So I guess I'm updating monthly - this one has been really up and down. The sinus issues got me off to a bad start, it took them weeks to clear and I'm still having a rough time. I'll go from fine to feeling weird/spacey/crappy several times a day. We're creeping up on a year since I started methylation and I'm basically just trying to figure out what went wrong. I'm positive there's a piece of this puzzle that I'm missing. I did speak with a methylation doc in Australia, and it was a good conversation but I'm still weighing my options about how I should proceed to resolve this.

Something did occur to me yesterday though. I found some threads talking about paradoxical/induced/donut hole folate sufficiency. @Freddd has talked about this a lot - the idea being that if you start methylation too fast the body can deplete its folate stores and you can get really sick. In fact, when I first posted here about my bad reaction a poster suggested it sounded like I was having a mix of low potassium and low folate symptoms. Potassium certainly has helped but I never thought much about folate or any other B vitamin. I figured if I was off the supps any deficiency should have self corrected. But maybe not.

I did show a lot of the symptoms right after I started high dose adb12 (I was taking 9mg every other day vs 600mcg methylfolate). It's interesting it mentions cracked fingernails; not only did I have this, but my fingernails got red, itchy and inflamed within hours of my first adb12 megadose. Was it low folate? Ditto the terrible diarrhea, the cough and mucus that wouldn't go away for months? The muscle spasms and cramps may have been potassium, and those symptoms have generally gotten better. But a lot of the other stuff - overheating, flu symptoms, "viral" issues, keep coming back. Freddd says that it's easy to mistake folate deficiency for detox (which is what this has felt like), and without proper treatment it may not resolve even if you stop methylation supplements. To top it off, I've been taking a multivitamin this entire time with 400mcg of folic acid. This is something the threads here about folate deficiency declare a big no-no, and the methylation doc also told me to stop it.

Perhaps I'm getting ahead of myself because I want an answer. But could this really just be as simple as me falling into the two common traps of low potassium and folate deficiency and not even realizing it? I'd feel a bit silly if it were but I'll take any explanation that has a clear solution at this point. I've stopped the multi, so that will cut down the folic acid intake substantially. I'll have to see where to go from here.
 
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@jnwp
So I guess I'm updating monthly - this one has been really up and down. The sinus issues got me off to a bad start, it took them weeks to clear and I'm still having a rough time. I'll go from fine to feeling weird/spacey/crappy several times a day. . . . I found some threads talking about paradoxical/induced/donut hole folate sufficiency. @Freddd has talked about this a lot - the idea being that if you start methylation too fast the body can deplete its folate stores and you can get really sick. In fact, when I first posted here about my bad reaction a poster suggested it sounded like I was having a mix of low potassium and low folate symptoms. . . . Freddd says that it's easy to mistake folate deficiency for detox (which is what this has felt like), and without proper treatment it may not resolve even if you stop methylation supplements. To top it off, I've been taking a multivitamin this entire time with 400mcg of folic acid. This is something the threads here about folate deficiency declare a big no-no, and the methylation doc also told me to stop it.
I've only been on Freddd's protocol for a week but my main symptom is bad sinus pain too. I've been supplementing with potassium and I am increasing my folate every day hoping that I will reach a point where it gets rid of it. Started at 400mcg and today up to 2800mcg (spread over 4 doses in the day). I've also removed any supplements that contain folic acid. Have you felt any improvements since adding in folate now?
 

Oberon

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@jnwp


I've only been on Freddd's protocol for a week but my main symptom is bad sinus pain too. I've been supplementing with potassium and I am increasing my folate every day hoping that I will reach a point where it gets rid of it. Started at 400mcg and today up to 2800mcg (spread over 4 doses in the day). I've also removed any supplements that contain folic acid. Have you felt any improvements since adding in folate now?
I just noticed your post after going through old threads. Hopefully the pain is gone by now, but if not It's possible your sinus pain is due to increases in histamine. You may want to try adding in some Methionine or SAM-E to see if it helps. See Dr. Lynch's post here.
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
 
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Thank you for the reply @lakesarecool ! Well the good news is I had managed to get rid of the sinus pain (I kept titrating with the B12 / folate ratios and found a balance at 12mg B12 and 9mg folate and took plenty of potassium throughout day). Ironically though at your time of messaging me I'm struglling with a 10 day session of the pain again thats coincided with me picking up a bad cold. Hoping that it will pass as cold goes though!

Interesting article from Dr Lynch which I appreciated reading. I take my pottassium and b12/folate an hour apart throughout the day as @Freddd recommends not taking them together (I missed the reason why) and start the day with the folate /b12 before rising. I might try switching that round and starting with the potassium as he suggests that would help with dizziness and nausea which I usually have in the morning.

It was also interesting reading his opinion about how important it is to supplement with glutathione. I certainly know that I am very low in this but removed NAC on Freddd's recommendation. From what I remember I think supplementing with glutathione directly was also a no no (instead relying on the B12 to naturally raise levels) but I'll go back and check on that I think.
 

Oberon

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@Chantal.p

I'm sure the sinus pain will pass once the cold goes away. I believe Freddd states that it will impeded the absorption of one another if you take folate and potassium together. I don't think there's any biochemical basis for that statement it just may be something personal to him. You can always try it together and see how it affects you.

In terms of using NAC and Liposomal Glutathione many have had success using both for CFS on this forum. Freddd has adult onset CBLC disease so his biochemistry is unique and can not handle the Glutathione based precursors. There are other members on this forum who have also didn't respond well to Glutathione. I think it's one of those personal things where some will respond well and others will respond poorly.

You can always try the methylation protocol for a little while as one of the basic premises of it is to raise your Glutathione so this should naturally happen over time with the methylation protocol.: http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle

If you aren't already taking Vitamin C it will help boost your Glutathione levels and is on Freddd's supplement list:
https://www.ncbi.nlm.nih.gov/pubmed/8317379 (Note: this is a small study.)

You can also try Vitamin E and magnesium:
https://www.ncbi.nlm.nih.gov/pubmed/10523398 (Note: this is a small study.)
 
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Thanks @lakesarecool

Yep I'll keep going with the methylation protocol - thinking of trying Greggs B12 oils instead of my sublinguals next to see if I get more effect (not noticing much of the "brightening" despite quite high doses).

I take vitamin E and 500mcg of magnesium a day. I do take Vit C but only 1000mcg (in two 500mcg doses). I wanted to go for a much higher dose of this but the nutritionist I was seeing said he was concerned about that causing more oxalate conversion when I already have issues with high oxalate levels? Don't have any knowledge around that so just stuck with what he recommended along with the low oxalate/low lectin/ketogenic diet heput me on.
 
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@jnwp how are things going for you now?

I have created a new thread recently (take a look in my profile) and seem to be going through sort of similar symptoms to you. I've stopped all supplementation on pretty much day 4, but a couple of weeks on symptoms persist. My symptoms are primarily what feels like anxiety (I've had 1 panic attack).

I have been supplementing potassium (coconut water, about half a litre to one litre a day), magnesium 500mg/day and vitamin D. Maybe I can up my potassium some more as that may be causing it, if my methylation is still cranking (which @caledonia has now led me to believe is quite likely).

I am thinking about getting nicotinic acid (niacin) to try out too, but will first research it more as I have learned my lesson about ingesting anything to do with methylation. I am not sure if it is OK for me to take daily / regular.

Anyway, can you reply and tag me here with how you are going?
 
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I apologize to @krzysiek.s and others for the very, very long delay in replying to this.

To give a brief update, I have spent the last three years gradually improving, with a very mixed year in 2017, a much better 2018 and having spent most of 2019 at what I would more or less consider my "baseline" functionality prior to this episode (quite good relative to other ME/CFS patients).

The key has been sleep. Not just a certain number of hours, but deep, restful sleep. The first hints that this was the primary driver came when, as I mentioned a few posts up, I enjoyed a "mini-remission" after moving to a new country and spending a few weeks searching frantically for a place to live and attending classes at the same time. I was so tired every night that I basically passed out, much earlier than I'd normally sleep. Once things settled down, the symptoms returned. Ditto a few months later when the partner and I took a trip to Cambodia - the first time in a year I went almost entirely without symptoms for almost a week. A few days after coming home and settling back in, symptoms came back. And so on and so forth.

I have spent the last year or so working full-time. It has been generally exhausting and taken an emotional toll, but I sleep deeply most nights and thus, I have been almost entirely free of the symptoms I described in this thread (particularly the constant sweating, shakiness of limbs, stiff back, et cetera). They only return when I have long bouts of insomnia, or, as has been the case recently (when I have been working from home), return to my old sleep schedule.

Whatever damage I did to myself in 2016 was likely a simple product of pushing too hard and deepening the existing damage to my body's immune and/or neurological system. I actually don't think the methyl supps had all that much to do with it, other than giving me a temporary burst of energy that likely helped me convince myself to keep pushing too hard. If my body were a rubber band, I stretched it too far and something snapped. This probably would have happened with or without methyl supps, they just gave me a nudge in that direction, I think. I have been off them for nearly two years, and have gradually shifted towards viewing at least this particular issue as related to a dysfunction in my HPA axis - an idea that's gained more traction in recent years as more research has been done. And deep sleep seems to go a long way towards fixing it naturally and at least returning me to a steady baseline of function.

There is some lingering concern over this. I still miss the days when, prior to this episode, I could go to bed at just about any hour and not deal with these particular symptoms. And since one of my career goals is to shift to full-time remote work for various reasons, I do worry about what effect that will have on my sleep quality. But having a reliable tool in my arsenal to mitigate these issues is a tremendous relief.

So this story is by no means over, but I wanted, for the sake of others who might stumble across this, to provide a positive update in the hopes that it might be useful to them, or at least somewhat encouraging.
 
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