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 »

Enigmatic wrote: Sun May 23, 2021 5:15 pm
Brooks wrote: Mon May 10, 2021 2:32 pm
Janie wrote: Mon May 10, 2021 5:43 am
Hi Brooks, I was hoping you could clarify a few questions I had after reading through your posts:

1. You mentioned different using various brands and strains of probiotics in varying dosages. What brands, strains, and dosages were you using?
2. You have alluded to the fact that taking these probiotics resolved your cognitive side effects but were also eventually a catalyst for worsening of symptoms? Do you attribute this to a change in the brands, strains, or dosages?
3. You mentioned that the probiotics solved your cognitive issues, albeit temporarily; did they have any effect on sexual side effects?
4. You have mentioned that the overuse of these probiotics may have contributed to the worsening of current symptoms even though the crux of your theory pertains to a genetic defect in ammonia processing in the body, how do you view these things as being linked since the same genetic defect would have been in play during your period a cognitive recovery?

Any insight to any of these questions would be greatly appreciated, I have been taking probiotics for many years and have recently begun to ramp up on different strains dosages etc. and have been seriously considering FMT very soon. I believe that the microbiome does hold major promise as treatments for some of these side effects, but do not want to throw the baby out with the bath water so to speak.
Hello, thank you for so clearly conveying (and organizing) the questions you have, before I delve into each one, I will briefly detail my story. I have suffered from PSSD since 2012 and was on a mission to fix it; I mounted myself on a hobbyhorse from which nothing was able to dislodge me. I had all the typical symptoms including some slight cognitive issues. My issues were always alleviated by Concerta, however. I was admitted to law school in August 2016 and for the first year I began to really struggle, I had never taken Concerta every day like I needed to in law school and I began developing a tolerance. In the summer of 1L year, I switched to Focalin XR and I did wonderfully during the summer and into that fall. However, in spring 2017, I began building a tolerance to Focalin as well, and my benefits began to dwindle. I prayed for a solution, as I knew the "old Brooks" would be able to conquer the top ivy leaguers in my school. Eventually, I ran across some Pubmed research on the benefits of certain probiotic strains and cognitive function as well as the function of serotonin and dopamine receptors. I experimented with several probiotic strains and learned that they eliminated all tolerance to psychostimulants and that I could use certain strains to enhance cognition. After two weeks everything was clear and the PSSD cognitive impacts no longer hindered me. My new brain was better than my pre-PSSD brain. I was functioning to a degree so amazing that I oftentimes impressed myself. My score on the Montreal Cognitive Assessment Test ("MoCA") went up like five points in two weeks; I found my salvation, how could I ignore it? I then spent the last year of my law school climbing the curve and finished third in my class, all while tutoring half the law school and working a part time job. There was nothing holding me back.

I then returned home from law school in May of 2019 where I prepared to sit for the hardest bar exam in the entire country. During my bar prep time, I got fed up with the one probiotic company I was buying from (Naturewise) due to their poor customer service and unreliable supply, so I got this grand idea to look at their strain list and I decided to try combining numerous probiotic brands to get every strain the Naturewise probiotic brand had. In doing this, I would be taking numerous different brands each containing billions of CFUs. I went on to pass the exam that July, but I knew immediately afterwards that something had changed, I became so impaired that, for the longest time, I did not even realize it. I know this sounds weird, but I always tell people that when you are so impaired that you do not realize it is when you know you have a huge problem, if you realize and recognize it, there is hope.

Eventually, around January-February 2020, I began to realize that I had been existing in an unreachable world of my own. I lost someone very close to me and did not even have the cognition to realize or recognize it. I tried restarting only the Naturewise probiotic, as well as the other ones I had originally taken and derived benefit, but it had no effect. I went to the neurologist and realized that my MoCA score was the worst it had ever been. I thought maybe I caused SIBO and I took several courses of antibiotics, later tested positive for SIBO, and got treated again. Nothing would ever help me, no probiotic, no antibiotic, nothing. I eventually had the idea to test for Ammonia and it ended up being moderately high, and I eventually learned that treating the hyperammonemia did not fix my cognitive dysfunction nor did it lower the ammonia levels to any degree. I have now seen doctor after doctor to no avail (once I had hyperammonemia they all of a sudden wanted to start taking me seriously). I got to one point where I was so impaired I was bedridden all day and all I could do is lay on my floor and cry. I welcomed death but it never came.

In recent times, I have tried a magnitude of treatments for hyperammonemia and have found only slight relief using L-Ornithine, L-Arginine, L-Cirulline, and L-Ornithine L-Aspartate ("LOLA"). I also take Riluzole to protect my brain against the neurotoxicity of ammonia.

To answer your specific questions in order:
(1) Original probiotic combination providing benefit: Naturewise 450 Billion, Swanson L-Reuteri, Lifted Mood-Boosting Probiotic (intermittently used, added this in when I really needed to focus, not all the time as it made me too focused at times; it was a silver bullet), and AOR Probiotic 3 (intermittenly used, stopped this one and continued with others). The only probiotics I used consistently throughout the course of this period were the Naturewise and the Swanson L-Reuteri.
    Bar Prep Probiotic Combo (to replace others, taken just before losing it all)- I do not have access to all the ones I used, as this period is very cloudy and my ex was purchasing them for me from her Amazon account and we no longer talk. But the ones I know of are: Solaray Urgent Care, InnovixLabs multi-strain probiotic, RAW probiotics 100 Billion (garden of life), and I think there may have been others but I just cannot remember.
    (2) I think I may have exacerbated some type of adult-onset urea cycle disorder in my time of bar prep when I mass used various probiotics, as infections of the gut can trigger partial-urea cycle deficiencies in adults with latent UCDs. My theory is that PSSD triggered the ARG-2 variant causing slight hyperammonemia and my time during law school, where I benefitted with the particular probiotic combo, was a time where I simply lowered brain ammonia using probiotic strains (certain strains are anti-ammonia, like L-Plantarum, for example). I am unable to verify any link between the probiotic misuse and the onset of my symptoms, but the timing is certainly suspect along with my positive SIBO test and concurrent GI-symptoms.
    (3) Yes, Naturewise+L-Reuteri had a mildly pro-sexual benefit, however, when I would add in the Lifted Mood-Boosting Probiotic it would give me laser focus but diminished sexual function (hence why it was only intermittently used). In any case, the pro-sexual benefit was nowhere near as substantial as the cognitive benefit.
    (4) This question is addressed in my answer to #2, referenced above. In a nutshell, I think PSSD is an ARG-2 Urea Cycle Disorder and that I was able to mask some of the cognitive deficits during the law school by using some anti-ammonia; anti-inflammatory probiotics and that the later misuse of the alternative combo during bar prep simply had an impact that mimicked infection, altered the gut microbiome, and/or triggered/exacerbated the underlying partial-Urea Cycle Disorder (ARG-2). In reality, probiotics provided me with a "Superhuman" brain and reversed all deficits, it only makes sense that the gut microbiome (hence the probiotic misuse during bar prep) is somehow involved since a reverse effect occurred when other probiotics were taken in replacement and in mass amounts.

    Only two (2) things changed during the relevant period: (1) the probiotic combination; and (2) my living situation when I moved home from law school. It is worth noting that all environmental factors have been ruled out and there is no mold or other environmental toxin where I live.

    Other comments:
    ". . . I have been taking probiotics for many years and have recently begun to ramp up on different strains dosages etc. and have been seriously considering FMT very soon. I believe that the microbiome does hold major promise as treatments for some of these side effects, but do not want to throw the baby out with the bath water so to speak"
    Please be careful how much probiotics you take, overuse has been linked to SIBO as well as a condition called D-Lactic Acidosis. And you may have a hard time getting a doctor to perform a FMT absent a condition known as clostridium difficile, which is the only FDA approved purpose for the procedure. If your physician does agree to perform such a procedure, I would recommend trying to find a young healthy donor, as the microbiome is much different between younger and older adults, with younger obviously being better for various reasons.

    Brooks
    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 »

    R3m3dy wrote: Thu May 13, 2021 10:59 am Hey man, given your situation of lack of livability with a worsened condition I don't want to speculate on what you mean by God calling you home, but before he does have you considered trying other things? I know you have your set of theories. I don't know if you've attempted the hormonal route or not yet but if you haven't that might be worth exhausting before you go as that route has helped an awful lot of sufferers before. At the end of the day without randomized testing the hormonal route is just n=1, anecdotes, and speculation, just like your theory.

    There are other options that could possibly help your cognition as well. I have had an an extreme, experimental regimen I've wanted to try for a long time but lacked the resources to do so until recently that I now have the means to begin. It is best to exhaust all options rather than pigeonholing yourself with one theory.

    I know you acknowledge this, but at multiple points throughout PSSD history many people have believed that they have found "the" underlying pathophysiology but they have never been correct. That is not to say you are not, but the odds are not in your favor, and you may find something completely different from what you expect helping you. Or, who knows - maybe your theory is correct, but other treatments that have helped people, that you would consider completely unrelated to your theory, could unexpectedly help you through a yet unknown mechanism.

    I wish you strength and nothing but the best.
    Thank you, you are 100% correct in that this may be just another failed theory, but it is the best I was able to come up with (and the only one I was able to somewhat verify). I appreciate your encouragement and rest assured I am never going to give up; I dream of being the way I once was, when I was at my absolute best. I think it is still possible to get back to that point. I do have some nights where I feel so bad and I am so impaired that I feel as if my demise is certainly impending. And, to your other comment, I would be willing to try anything that might help me get back to where I was before, I am open minded if you wanted to share any of your ideas.
    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 »

    PsychoGenesis wrote: Fri May 14, 2021 10:05 am welcome Brooks, have you taken a look into sodium benzoate?? also what you think about this regimen?

    https://forums.phoenixrising.me/threads ... der.83371/
    I have tried sodium phenylbutyrate, sodium benzoate is typically given intravenously for hyperammonemia
    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: Thu May 13, 2021 9:58 am
    Did you check for bacterial infections?
    I have taken the GI-MAP and the Organic Acids Test, the results of which have been unremarkable.
    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: Thu May 13, 2021 11:50 am Did you try ~10g of sodium benzoate?
    I have tried sodium phenylbutyrate (it is too disgusting to take), sodium benzoate is typically given intravenously for hyperammonemia
    Enigmatic
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    Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

    Unread post by Enigmatic »

    Hi Brooks, thank you for your detailed and thoughtful reply. First and foremost, I hope that you start to feel better and make a move back towards your baseline soon. I find your theory interesting as it is certainly something that has not been postulated here or on any other of the forums. I personally do not think it comes down to any one single gene per se, but the interplay between many although that would not discount your overarching theory of a disrupted ammonia detoxing system as a factor or even lynchpin to symptoms. That being said, there was a big drive on these forums at one time for people to test for their genes, so it would be helpful for persons who have those results to look into the gene you cited or other genes that may contribute to urea cycle deficiencies and share those results in this thread. I bumped up against the theory of elevated ammonia contributing to symptoms a few years back and casually started taking ornithine as a result to little gain. I realize that what you are currently dealing with is quite serious and so any suggestions I may have would be taken with a massive grain of salt but that being said, I would look into taking isolated strains of probiotics that would have a lowering effect on total ammonia levels as some strains can. I have purchased probiotics in the past from vendors who will sell single strain powders in "bulk," so perhaps a targeted approach could still be helpful over a shotgun approach. I know that some strains such as SBO's can be helpful even in cases of SIBO and that some strains can be helpful with regard to ammonia metabolism although I have not done enough personal research in this area to make any specific suggestions. Again, I thank you for candidness and hope you are able to turn the corner soon.
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    Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

    Unread post by fbz »

    I'm taking 10mg lithium orotate daily for about 1,5 year now and i'm 7/10 by that. Lately i had bad stomach pains and doctor gave me esomeprazolum (20mg once a day) and that improved my sexual functioning? Is it related to this hipothezis? (i'm not science guy)
    Halan
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    Re: CAUSE OF PSSD FINALLY DISCOVERED (In One Patient) Relinquishing My Research While There Is Still Time

    Unread post by Halan »

    This is interesting. I was tested for ammonia years ago and it was elevated. I just cut some of the protein I was ingesting and didn't test again.


    As for genetic tests, please tell us the SNPs we should look for. And what variants.

    What variant of the rs742869 is the bad one?
    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 »

    How much ornithine did you take? which version? that might be the problem
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