Very agonising burning acid feeling in my mouth/cheeks. Turns out I had run out of arginine and taking citrulline is fixing it.

Sophiedw

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All of a sudden my mouth got more and more painful and now it’s like all of the tissue has died and I don’t know if it’s getting better or worse. On the Freddd protocol so must be that I’ve run out of a cofactors or something and this has caused all my mouth tissue to die. Has any one ever experienced something like this? I know it’s not copper coz I keep on top of my copper.

Working theory is arginine but then I don’t know if it’s getting any better. Also had a bunch of sores open up on my body and digestive tract feels painful.

it’s been so scary. Any advise and also sympathy would be very much appreciated. :(

@Freddd

thanks
 
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Am hoping that @Freddd responds to these tags. I have zero idea of what's going on, particularly in terms of @Freddd 's methylation protocol, but I know how scary and destabilizing these inexplicable, mysterious, out-of-the-blue things are ...

Just remember: a lot of things stabilize by themselves as the body adjusts to whatever is pissing it off this time, and hang in :hug::hug:!!!
 
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Uncertain if this is relevant, but in case it could help:

More on the Ad B12. Only with these higher daily doses am I able to keep angular cheliosis and oral thrush at bay. I know chronic candidiasis and thrush can be quite chronic when methylation is blocked, and in organic acidemias.

Could this ongoing, unresponsive candidiasis and thrush be part of the reason my body demands so much Ad B12?
 

Sophiedw

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Thanks for the advice everyone. Turns out I was right about the arginine. My mouth tissue had not died but my body was using my face and mouth as a sink for ammonia it couldn’t process.

I could not just take arginine to fix these ammonia issues as it is metabolised by the liver, so I had to take citrulline & arginine instead. (In addition to all the stuff I normally take of course watching out for deficiency symptoms). Upon taking this citrulline the issues have immediately started to resolve after not being able to eat for 6 days.

I write this for anyone’s reference in the future as it was unbelievably scary and I even broke my a and e virginity, only to be thoroughly disbelieved and belittled. (Are you sure you haven’t bitten your cheek x3 from one doctor) (ahh yes, I bit my cheek last Thursday and it’s caused me such severe burning agony 6 days later that I was afraid I might die and have come to the hospital, silly old me - do I come across as someone who might mix that up to you? Do I? - but that’s a different story)

Anyhow, what a wild ride. Hope this can help anyone in the future.
 
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Upon taking this citrulline the issues have immediately started to resolve after not being able to eat for 6 days.
I'm so happy that you found a fix for this miserable, baffling assault ..... and wouldnt it be nice if we could transfer all our agonizing symtoms to every Dr who asked us incredibly condescending questions that imply that we're idiots, or to the ones who tell us that it's all in our heads ....
I write this for anyone’s reference in the future as it was unbelievably scary
Thoughty, generous and kind of you :woot::woot: :thumbsup::thumbsup::thumbsup: :hug::hug:.....
 

Learner1

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Thanks for the advice everyone. Turns out I was right about the arginine. My mouth tissue had not died but my body was using my face and mouth as a sink for ammonia it couldn’t process.

I could not just take arginine to fix these ammonia issues as it is metabolised by the liver, so I had to take citrulline instead. Upon taking this citrulline the issues have immediately started to resolve after not being able to eat for 6 days.

I write this for anyone’s reference in the future as it was unbelievably scary and I even broke my a and e virginity, only to be thoroughly disbelieved and belittled. (Are you sure you haven’t bitten your cheek x3 from one doctor) (ahh yes, I bit my cheek last Thursday and it’s caused me such severe burning agony 6 days later that I was afraid I might die and have come to the hospital, silly old me - do I come across as someone who might mix that up to you? Do I? - but that’s a different story)

Anyhow, what a wild ride. Hope this can help anyone in the future.
Thank you so much for sharing. I've also gotten help from taking citrulline - it helped me sleep through the night.

How did they finally figure out about the ammonia and citrulline?
 
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My nutritionist recently put me on high doses of L-Arginine. It's pulling me out of a coma slowly but then I do more and relapse.

What are the liver concerns?
 

S-VV

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Very interesting OP!, i dont think the ulcers represent some ammonia sink. Mucosal ulceration is usually an immune mediated process, and in crohns disease (and maybe ulcerative colitis as well) ulcers can appear in any part of the digestive tract.

Arginine seems to be very important for immune homeostasis, and M2 macrophage induced arguinase can create an arguinine deplete microenvironment that limits T-cell activity, this can be reversed by exogenous arginine administration.

Interestingly, M2 macrophages are polarised by tgf-beta and IL-10, both of which have been shown to be elevated in me/cfs. I dont know the significance of any of this, but I was wondering if arginine has helped with other symptoms
 
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@S-VV
I actually identified with the mouth sore as I recently had one erupt in my cheek while dealing with excess ammonia (a metabolic genetic issue, recently identified). I am only a few weeks in titrating up on L-Arginine, having gone to being almost comatose (but still able to do self-care) to now seeing some improvement.

Clearly I'm wondering if ammonia toxicity was making me worse, but I'm also curious about using l-citrulline instead. Will discuss with my nutritionist later this month.

Any other deep metabolic insights appreciated.