CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

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Brooks
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by Brooks »

link11 wrote: Mon May 10, 2021 10:28 pm Hi Brooke

I checked my DNA results and I don't have this particular SNP. However my urea cycle markers are all quite low. Ornithine, citruline and urea itself. Does this mean I could have high ammonia?
Do you know if your DNA test covered this particular SNP? It is not one commonly tested. And to answer your second question, ornithine and citrulline are two of the main amino acids in the urea cycle, if they are low it could possibly indicate elevated ammonia. You should talk to your doctor to see if you can get three or so ammonia levels tested at various points in a week. Particularly in a well fed state.

Brooks
link11
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by link11 »

Do you know if your DNA test covered this particular SNP? It is not one commonly tested. And to answer your second question, ornithine and citrulline are two of the main amino acids in the urea cycle, if they are low it could possibly indicate elevated ammonia. You should talk to your doctor to see if you can get three or so ammonia levels tested at various points in a week. Particularly in a well fed state.

Brooks

Maybe, I mean it had some pretty obscure stuff in there. I have no chance of getting those tests on the backwater NHS unfortunately, and I'm assuming they don't check it in a full blood count?

From what I've seen I might have underactive Arge enzyme with low ornithine and citruline etc. But still trying to learn about this all. My arginine was also low and proline
cdraham
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by cdraham »

Did you ever have anhedonia? Did it go away?
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garycooper
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by garycooper »

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.
Naczoz
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by Naczoz »

"in one patient" is statistically insignificant, so its not a couse, just a case study and there might not be even a correlation.
cdraham
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by cdraham »

Naczoz wrote: Wed May 12, 2021 1:07 pm "in one patient" is statistically insignificant, so its not a couse, just a case study and there might not be even a correlation.
There was another guy who got a window on high dose probiotics/antibiotics
Frog
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by Frog »

Naczoz wrote: Wed May 12, 2021 1:07 pm "in one patient" is statistically insignificant, so its not a couse, just a case study and there might not be even a correlation.
Naczoz, the whole point of the forum is for people to post about their experience with PSSD. Even if there isn’t a correlation and it is statistically insignificant the user has every right to post about it. I really don’t understand why you have to criticise everything
Brooks
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by Brooks »

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.
Brooks
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by Brooks »

Naczoz wrote: Wed May 12, 2021 1:07 pm "in one patient" is statistically insignificant, so its not a couse [sic], just a case study and there might not be even a correlation.
Thank you for your post, I never claimed to have completed a statistically significant study involving numerous patients (I do not have a medical license and I am not affiliated with any academic institution). My post was simply me sharing my best PSSD theory and supporting research with you guys in hopes that it may help you guys. I talked much about it with my loved ones and decided that, if I do not pull through, it would be selfish to keep my discovery to myself when I could have had the opportunity to help all those out there suffering. I once had a close personal friendship with the user on here named "Ghost," but after I graduated law school we fell out of touch. Had I still been close to Ghost, I would have simply shared my theory with him, but I am not so I thought I would just share it with all of you guys in hopes that you all can take the wheel from here. I think a lot of this group, there are many educated and motivated people on here and I have full confidence my work can be proven or disproven so that it advances PSSD research in the right direction.
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