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 »

cdraham wrote: Mon May 10, 2021 2:44 pm
Ok thats crazy. But there are bacterial infections that dont show up on any tests... have you ever considered doing ozone therapy?
No, but I have done several rounds of various antibiotics, as at first I simply believed that I caused SIBO due to my mass overuse of probiotics (and I had a positive breath test during the relevant period). The last antibiotic combo (which I took very recently) appeared to reverse this new condition during the first week but then I grew progressively worse the second week and that has continued to the present (this was two weeks ago). It is also worth mentioning that taking 10-undecenoic acid, which I tried several months ago, seemed to have remarkable benefit for the first week; taking me back to where I was around early 2019 when the probiotics still worked. Unfortunately, this just dwindled out and never worked again. I am taking Fluconazole now along with some herbal remedies in the event this thing is something fungal but the GI-MAP did not indicate any fungal overgrowth.
Part of me wonders if what I did during bar prep caused a permanent alteration to my GI-Microbiome or something, I am not sure. The person on here talking about fecal transplants raises some interesting theories although I am skeptical that it can treat any sexual issues. I do think it could reverse some cognitive deficits in certain cases.
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 »

Brooks wrote: Mon May 10, 2021 2:56 pm
cdraham wrote: Mon May 10, 2021 2:44 pm
Ok thats crazy. But there are bacterial infections that dont show up on any tests... have you ever considered doing ozone therapy?
No, but I have done several rounds of various antibiotics, as at first I simply believed that I caused SIBO due to my mass overuse of probiotics (and I had a positive breath test during the relevant period). The last antibiotic combo (which I took very recently) appeared to reverse this new condition during the first week but then I grew progressively worse the second week and that has continued to the present (this was two weeks ago). It is also worth mentioning that taking 10-undecenoic acid, which I tried several months ago, seemed to have remarkable benefit for the first week; taking me back to where I was around early 2019 when the probiotics still worked. Unfortunately, this just dwindled out and never worked again. I am taking Fluconazole now along with some herbal remedies in the event this thing is something fungal but the GI-MAP did not indicate any fungal overgrowth.
Part of me wonders if what I did during bar prep caused a permanent alteration to my GI-Microbiome or something, I am not sure. The person on here talking about fecal transplants raises some interesting theories although I am skeptical that it can treat any sexual issues. I do think it could reverse some cognitive deficits in certain cases.
Interesting, did Rifaximin do nothing for you? Some reported getting a window on it..
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 »

Brooks wrote: Mon May 10, 2021 2:56 pm
cdraham wrote: Mon May 10, 2021 2:44 pm
Ok thats crazy. But there are bacterial infections that dont show up on any tests... have you ever considered doing ozone therapy?
No, but I have done several rounds of various antibiotics, as at first I simply believed that I caused SIBO due to my mass overuse of probiotics (and I had a positive breath test during the relevant period). The last antibiotic combo (which I took very recently) appeared to reverse this new condition during the first week but then I grew progressively worse the second week and that has continued to the present (this was two weeks ago). It is also worth mentioning that taking 10-undecenoic acid, which I tried several months ago, seemed to have remarkable benefit for the first week; taking me back to where I was around early 2019 when the probiotics still worked. Unfortunately, this just dwindled out and never worked again. I am taking Fluconazole now along with some herbal remedies in the event this thing is something fungal but the GI-MAP did not indicate any fungal overgrowth.
Part of me wonders if what I did during bar prep caused a permanent alteration to my GI-Microbiome or something, I am not sure. The person on here talking about fecal transplants raises some interesting theories although I am skeptical that it can treat any sexual issues. I do think it could reverse some cognitive deficits in certain cases.
Maybe you had SIBO before? Did you try rifaximin? Those are ammonia producing bacteria
climb
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by climb »

Brooks wrote: Mon May 10, 2021 2:32 pm
Janie wrote: Mon May 10, 2021 5:43 am I think you may had a crash and worsening that many people with PSSD experience at some point. Do you know what triggered it? Just stress from the exam or did you take anything new by that time? Is it possible to test hiperammonemia? How do you have a proof of that condition? I hear what you are saying, but with this condition it is extremely hard to be positive in my experience.
OBJECTION! compound question LOL sorry lawyer humor. I will address your questions in order:
(1) There were two (2) changes that transpired during the relevant period of the change (a) change of living environment as I moved home from law school; and (b) I significantly changed up the probiotics I was taking and I used a combination of weird brands and strains and significantly overused them during exam prep. I had a love-hate relationship with the company I was buying them from originally so I tried to combine various probiotic supplements to cover all the strains in the one I discontinued
(2) Yes, you can test for hyperammonemia, there is both plasma and arterial ammonia that can be tested. But remember, ammonia levels fluctuate throughout the day so it is best to have it tested several times during the same week. Talk to your medical provider to see if s/he is willing to test this for you.
(3) The proof I have is what I referenced in my original post, I have a pervasive case of treatment-resistant hyperammonemia and I was able to verify my ARG-2 theory by having a genetic test for that specific gene.
(4) I understand it is hard to remain positive, and I was where you are at a point and time not long ago. It is my hope that this theory turns out correct and you can get your life back. And even if this theory is not correct, I still hope you can find the positive
Hi Brooks,

Thanks for the interesting posts.
Sorry for being a bit slow on the uptake. Am I right in thinking that in order to help with checking your theory we should:

(1) Get tested for hypoammonemia.
(2) Have a genetic test for the ARG-2 gene.

Who would test for hypoammonemia? A gastroenterologist?

How do you go about getting a test for ARG-2?

Is there anything more specific than that?
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 »

cdraham wrote: Mon May 10, 2021 3:28 pm

Maybe you had SIBO before? Did you try rifaximin? Those are ammonia producing bacteria
I have had two rounds of Rifaximin, along with several other antibiotic combinations before it. The most recent Rifaximin course was taken concurrently with Clarithromycin for a double wammy. Nothing has worked to put me back the way I was before.
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 »

climb wrote: Mon May 10, 2021 4:37 pm
Hi Brooks,

Thanks for the interesting posts.
Sorry for being a bit slow on the uptake. Am I right in thinking that in order to help with checking your theory we should:

(1) Get tested for hypoammonemia.
(2) Have a genetic test for the ARG-2 gene.

Who would test for hypoammonemia? A gastroenterologist?

How do you go about getting a test for ARG-2?

Is there anything more specific than that?
Thank you very much for your kind words. And yes the two steps you have listed would probably be perfect to prove or disprove. As far as testing ammonia levels goes, your family doc can order that test (plasma ammonia), but I would recommend having it done several times during the same week as ammonia levels often fluctuate. In my case, they go from either normal, slightly elevated, to critical overnight.

As far as the ARG-2 test is concerned, I personally used Functional Genomic Analysis by Nutrigenetic Research Institute, but I would imagine that the standard 23andme might have the variants for ARG-2.
ErgogenicHealth
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Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

Unread post by ErgogenicHealth »

Thank you for sharing all this info, much needed to this community Brooks.

I will certainly be looking into this further.

On a side note, whenever I eat potatoe starch, it causes me to CRASH big time, and takes a week to recover.
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 »

ErgogenicHealth wrote: Mon May 10, 2021 9:11 pm Thank you for sharing all this info, much needed to this community Brooks.

I will certainly be looking into this further.

On a side note, whenever I eat potatoe starch, it causes me to CRASH big time, and takes a week to recover.
You are most certainly welcome, I hope you guys are able to do something with it and that it is one day used to cure you all. And Potato starch is high in protein, protein raises ammonia. In fact, patients with UCDs consume a strict low-protein diet.
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 »

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?
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