garycooper wrote: ↑Tue May 11, 2021 7:14 pm
Okay, this is a pretty wild theory. I'm still puzzled by it since I read this post last night.
I'm also extremely sorry for what is happening to you, Brooks. I'm also experiencing a quick cognitive decline...
I was wondering; what about fasting? If you cut protein intake, should this reduce the build-up of urea-ammonia in your body?
Or is it rather that the damage is already done.
Thank you for your sympathy and I am sorry you are experiencing something similar. Cutting protein can help for
some causes of hyperammonemia (
i.e. UCDs), but there are several ways ammonia is produced in the body not all of which is related to the Urea Cycle. All hyperammonemia causes can be broken down into two broad-general categories: (1) increased ammonia production; or (2) decreased ammonia elimination. Within these two categories, there are a myriad of possible causes, both genetic and acquired. There are some causes of hyperammonemia that are not documented well in medical literature so they are not checked by diagnosticians (for example, Lymes Disease and SIBO).
To answer your other question, I would like to think this damage is not permanent, I have had some good windows this past year, and I feel this is proof that I can still heal if I live long enough to obtain an accurate diagnosis, hopefully soon. I have been taking Riluzole to protect my brain against the neurotoxic effects of hyperammonemia until we find out the cause of this illness. Today my level was critical and I am really feeling bad today. Part of me wonders if a ARG-2 variant(s) is a form of urea cycle disorder in and of itself, just so rare it is not yet in the medical textbooks? I have no idea, I am not a physician but can only speculate.