PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

Integra wrote: Fri Jan 14, 2022 1:34 pm
Kostakonkordia wrote: Fri Jan 14, 2022 12:42 pm
Frog wrote: Fri Jan 14, 2022 12:08 pm Let’s try and keep this thread on topic which is the possibility of PSSD being small fiber neuropathy.

Also, let’s avoid attacks on people such as Healy, the PFS mods/foundation or anyone else. Any insults will be deleted and warnings will be issued. Feel free to debate and be constructive but please don’t just slate people.
Yes but small fiber neuropathy is caused by something, as someone said an autoimmune reaction, the cause for the autoimmune reaction is in my opinion very likely a dysbiosis issue. So it's not an isolatable cause.
But somehow some people still don't care about the gut which is shown to cause various autoimmune deseases like Morbus chron etc which also has genital numbness as a symptom. Alot of deseases enter the gut, such as covid which might cause covid longhaul.
They even found connections between dysbiosis, neuro inflammation, adhd, shizophrenia, autism, cfs, diabetes tpe 2, even cancer which is mostly also triggered by inflammation. So I don't know why you still trying to figure something out by some weird epigenetic theory.
All supplements suggested on survingantidepressants.org like magnesium omega 3 are antimicrobials or beneficial for the gut. Inosil or whatever it is called and alot of other supplements and diets that helped people have gut altering properties.
If you still think this condition is something epigenetical (which It by the way is because as I and some other member said epigenetics change all the time) there is nothing that can help you.
As some member on here wrote that one problem is in pssd research that everyone thinks it is something extreemely complicated(it in some way is complicated because the gut is extremely complicated on its own).
I just try to show people that there are strong corellations between that, but somehow people everywhere ignor it and that makes me hopeless because the answer seems so obvious and we need people further investigation in this and not waisting there time on stupid genes.
And I think it's ok to diss Healy as he promotes electro therapy which is beyond insanity, what comes next lobotomy?
But as you are the moderator I will shut my mouth on this.
A lot of text. I think many of us saw gut theory. But it's topic about SFN. So, go speak about SFN. Did u do biopsy?
What do you mean by alot of text?
Have you read lastround360 post on reddit?
Yes but SFN is linked to inflammation and the gut. This is a systemic condition like alot of conditions are systemic.
Normal medicine still doesn't want to accept that. No I havent done biopsy. For what? I mean yea we could do it but it would not lead to much. Correct me if I'm wrong.
bigpoppa10040
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Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

Why did kostakonkordia reply to me “I’ll stand by with you too brother” or something to the effect get deleted too??? That’s two posts from me (which by the way are never attacking anyone they are always straight up informative and that’s been my history on all forums) and now his post was deleted. Please don’t let censorship enter this forum unless absolutely necessary. Idk if it’s a technical issue or my computer is bugging but I rest my case
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

We absolutely need the biopsy results. It would act as objective evidence. Can you imagine 100+ people presenting with verifiable SFN, all claiming that their symptoms started after discontinuation of an SSRI?
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

To be honest I think you are sabotaging yourselves to a high degree.
Thinking this is difficult. It's like opium if you think this way. You get trapped in mystification.
Secondly trusting any governmental or medical institution. These both institutions are notoriously famous for not caring, killing, alienating, and robbing people.
Instead I say we take it completely in our hands and the so called professionals can only assist us.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

KJP21 wrote: Fri Jan 14, 2022 2:07 pm We absolutely need the biopsy results. It would act as objective evidence. Can you imagine 100+ people presenting with verifiable SFN, all claiming that their symptoms started after discontinuation of an SSRI?
Bro noone cares about us. If you think about a lawsuit forget it. The pharmaindustry is so powerful you have no chance. And they are intertwined with the law too. I wonder how breggin survived all these years. He is writing against psychiatry since the 70s.
I mean you can try to sew. But this will take ages and noone will profit from it, no treatment will be found. Better we focus on a treatment and promote it in this community. After that comes the downfall of psychiatry I say. We cannot fight if we are still sick and unhappy.
Last edited by Kostakonkordia on Fri Jan 14, 2022 2:15 pm, edited 1 time in total.
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

Kostakonkordia wrote: Fri Jan 14, 2022 1:58 pm
Integra wrote: Fri Jan 14, 2022 1:34 pm
Kostakonkordia wrote: Fri Jan 14, 2022 12:42 pm

Yes but small fiber neuropathy is caused by something, as someone said an autoimmune reaction, the cause for the autoimmune reaction is in my opinion very likely a dysbiosis issue. So it's not an isolatable cause.
But somehow some people still don't care about the gut which is shown to cause various autoimmune deseases like Morbus chron etc which also has genital numbness as a symptom. Alot of deseases enter the gut, such as covid which might cause covid longhaul.
They even found connections between dysbiosis, neuro inflammation, adhd, shizophrenia, autism, cfs, diabetes tpe 2, even cancer which is mostly also triggered by inflammation. So I don't know why you still trying to figure something out by some weird epigenetic theory.
All supplements suggested on survingantidepressants.org like magnesium omega 3 are antimicrobials or beneficial for the gut. Inosil or whatever it is called and alot of other supplements and diets that helped people have gut altering properties.
If you still think this condition is something epigenetical (which It by the way is because as I and some other member said epigenetics change all the time) there is nothing that can help you.
As some member on here wrote that one problem is in pssd research that everyone thinks it is something extreemely complicated(it in some way is complicated because the gut is extremely complicated on its own).
I just try to show people that there are strong corellations between that, but somehow people everywhere ignor it and that makes me hopeless because the answer seems so obvious and we need people further investigation in this and not waisting there time on stupid genes.
And I think it's ok to diss Healy as he promotes electro therapy which is beyond insanity, what comes next lobotomy?
But as you are the moderator I will shut my mouth on this.
A lot of text. I think many of us saw gut theory. But it's topic about SFN. So, go speak about SFN. Did u do biopsy?
What do you mean by alot of text?
Have you read lastround360 post on reddit?
Yes but SFN is linked to inflammation and the gut. This is a systemic condition like alot of conditions are systemic.
Normal medicine still doesn't want to accept that. No I havent done biopsy. For what? I mean yea we could do it but it would not lead to much. Correct me if I'm wrong.
And one more time. It's OP's thread. About SFN. One of methods to detect that is biopsy. Pls, go in this thread without gut theory. Yes, i read lastround360's post.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

bigpoppa10040 wrote: Fri Jan 14, 2022 2:04 pm Why did kostakonkordia reply to me “I’ll stand by with you too brother” or something to the effect get deleted too??? That’s two posts from me (which by the way are never attacking anyone they are always straight up informative and that’s been my history on all forums) and now his post was deleted. Please don’t let censorship enter this forum unless absolutely necessary. Idk if it’s a technical issue or my computer is bugging but I rest my case
Bro come to reddit pssd forum. If they are deleting forget about this forum. I'm new on this sites. My only goal is to find a solution and discuss with people but some of them are so toxic this is unbelievable. I have never seen such behavior before. At least people on survingantidepressants.org are very friendly and supportive.
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cdraham
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Re: PSSD could be small fiber polyneuropathy

Unread post by cdraham »

Northern_Star wrote: Fri Jan 14, 2022 7:10 am
cdraham wrote: Thu Jan 13, 2022 2:12 pm Honestly propeciahelp mods did more damage to the community than they helped. When people believe this stupid AR and epigenetic change theory, which is totally absurd, people tend to get stuck in a thought loop that there is no way out. Thats how suicides happen.

Just look at poor anhedonicape and other guys that thought they have some irreversible epigentic changes happened to them. they even went as far as trying out "demethylation treatments" like cancer drugs and stuff because some idiots constantly reinforced their ideas.
I am one of the admins of Propeciahelp. Your tone is unacceptable and your accusations are absurd.

The Propeciahelp team (in different compositions) was and is instrumental in organizing credible clinical research into our condition. Without the Propeciahelp team there would be no PFS Foundation, no research and very little awareness of PFS. To say that we did more damage to the community is absurd. Because of propeciahelp there is a community in the first place.

We know from the anecdotes on our forum that people suffer from PFS for years and years without returning to their pre-Fin levels. Such lasting changes can only be explained by fundamental changes in how the body works. Epigenetic changes would cause such fundamental changes. Maybe, but very unlikely, it turns out that these fundamental changes are caused by something else. But to say theories based on epigenetic changes are "totally absurd", when epigenetic changes would explain the phenomena we observe in patients, is completely unfounded.

Significant changes in androgen receptor expressions in penile tissue of PFS patients have been found in two separate clinical studies. That there is something going on on the AR level is an established fact. Calling theories based on these facts "totally absurd" is ignoring these facts. We have discussed the existing clinical research and that the AR is possibly a driving factor of this disease with leading scientists, including an AR specialist in the field of refrectionary prostate cancer (where the AR is also a driving factor) who has published research in leading journals and the director of large microbiology center. The research we are currently fundraising for will be lead by a scientist who has recently diagnosed a molecular level androgen insensitivity driven by epigenetics, who will be supported by her department head, a leading geneticist who has published groundbreaking research in leading journals. We have discussed our ideas with all those leading experts who find these ideas not only plausible but that research following these ideas is also worth their support.

It is also worth noting that the original ideas surrounding AR expression and epigenetic changes were developed by Awor in 2010. Since then, multiple aspects of these ideas (such as changes to AR expression, neurosteroid levels and gene expression) have been confirmed in clinical studies.

Everyone can make up their mind whether they have faith in people with a track record in organizing research, developing ideas that hold up to research and who are supported by leading experts in the field, or whether they want to believe arguments from forum trolls that completely lack any expertise and are limited to "bullshit" and "totally absurd". You can drop all these "Big bombs", do all pubmed abstract discussions on forums and pretend to be a tough guy and expert (and it is obvious that you are neither), in the meantime we are busy to get actual research done that will help us better understand our condition and that holds up to scrutiny by people who know what they are doing.

With respect to dangerous treatments, the staff of Propeciahelp has always strongly discouraged experimental treatment in the absence of sufficient knowledge of this condition. We also do not think that our situation is irreversible in principle or hopeless. But the facts are the facts, we cannot help it if people view the facts differently to us.
First, epigenetic changes happen all the time. Take any disease and there will be tons of epigenetic changes.

Androgen receptors - yes these can be up/down regulated. But they did not get epigentically silenced by the drugs itself, its the inflammatory cytokines that down/upregulate this androgen receptor expression, including in the prostata and penile tissue:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348471/

"Because inflammatory changes have been associated with the diagnosis of BPH13 as well as increasing age,14 1 we investigated and found that tumor necrosis factor α (TNF-α), NF-κB, and IL-6 regulate DNMT1 and subsequent methylation of the SRD5A2 promoter region. In addition, we show that SRD5A2 promoter methylation and reduced protein expression are associated closely with increasing age in both human and mouse tissues."

"That there is something going on on the AR level is an established fact. " - Yes, I agree with that.

Microbiome change study of melcangi: I also agree with that one, at least with the results of it, dysbiosis. But his model and study design didn't really have anything to do with the reality of this syndrome. Its much better to take live PFS/PSSD guys and send their stool to any top microbiome analysis company and compare the results.Hint: you will always find the same pattern and dysbiosis, does not take a multiple thousand euro study on rats to come to these conclusions.

Youre trying to fundraise for those top level epigeneticists but what do you expect from these honestly? They find some single genes that are responsible for these diseases? Thats totally laughable and a waste of money. What even qualifies this awor guy to come up with some theory that is "confirmed by clinical studies"? Take my theory, its confirmed by clinical studies aswell. Im just as qualified as awor or whoever to put some theory out there. The difference is that me and several other guys already had windows of full function and results on our own system with this theory.

It does not take any expert in a field to see the research you are doing is completely going in the wrong direction. Even the study design of some of those studies is compeletely absurd and does not have anything to do with reality. It just takes some smart open minded guys who can do "Pubmed abstractions" and not believe everything someone with "expertise" or some kind of "leading expert in epigenetics" says. It just takes some critical thinking. user @MindChanger pretty much figured out these syndromes already.

I can give you a few more tips, look into autoimmune diseases and the gut. Measure stuff like Cd57, ANA, th1 and th2 cytokines, quinolinic acid and kynurenic acid. I have detailed labs and even doctors on my side that confirm my results.
Frog
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Re: PSSD could be small fiber polyneuropathy

Unread post by Frog »

Kostakonkordia wrote: Fri Jan 14, 2022 12:42 pm
Frog wrote: Fri Jan 14, 2022 12:08 pm Let’s try and keep this thread on topic which is the possibility of PSSD being small fiber neuropathy.

Also, let’s avoid attacks on people such as Healy, the PFS mods/foundation or anyone else. Any insults will be deleted and warnings will be issued. Feel free to debate and be constructive but please don’t just slate people.
Yes but small fiber neuropathy is caused by something, as someone said an autoimmune reaction, the cause for the autoimmune reaction is in my opinion very likely a dysbiosis issue. So it's not an isolatable cause.
But somehow some people still don't care about the gut which is shown to cause various autoimmune deseases like Morbus chron etc which also has genital numbness as a symptom. Alot of deseases enter the gut, such as covid which might cause covid longhaul.
They even found connections between dysbiosis, neuro inflammation, adhd, shizophrenia, autism, cfs, diabetes tpe 2, even cancer which is mostly also triggered by inflammation. So I don't know why you still trying to figure something out by some weird epigenetic theory.
All supplements suggested on survingantidepressants.org like magnesium omega 3 are antimicrobials or beneficial for the gut. Inosil or whatever it is called and alot of other supplements and diets that helped people have gut altering properties.
If you still think this condition is something epigenetical (which It by the way is because as I and some other member said epigenetics change all the time) there is nothing that can help you.
As some member on here wrote that one problem is in pssd research that everyone thinks it is something extreemely complicated(it in some way is complicated because the gut is extremely complicated on its own).
I just try to show people that there are strong corellations between that, but somehow people everywhere ignor it and that makes me hopeless because the answer seems so obvious and we need people further investigation in this and not waisting there time on stupid genes.
And I think it's ok to diss Healy as he promotes electro therapy which is beyond insanity, what comes next lobotomy?
But as you are the moderator I will shut my mouth on this.
To clarify for others, the users response has been updated since my reply which can be seen through what I quoted originally.

Whether or not you agree with David Healy is up to you however this is not the place to discuss it. He is a psychiatrist and the treatment he decides on for his patients is up to him and then whether it he ECT or anything else.

What I think the biological cause of PSSD is also isn’t relevant. I simply said please keep the thread on topic. That said, I disagree with what you’ve said on epigenetics. If this is the cause, symptomatic relief could still be possible and we’ve also seen a number of cured PSSD cases. We also don’t know what the future holds for science so let’s not make claims that nothing can be done.

Let’s leave this now please.
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Frog
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Re: PSSD could be small fiber polyneuropathy

Unread post by Frog »

bigpoppa10040 wrote: Fri Jan 14, 2022 2:04 pm Why did kostakonkordia reply to me “I’ll stand by with you too brother” or something to the effect get deleted too??? That’s two posts from me (which by the way are never attacking anyone they are always straight up informative and that’s been my history on all forums) and now his post was deleted. Please don’t let censorship enter this forum unless absolutely necessary. Idk if it’s a technical issue or my computer is bugging but I rest my case
I deleted the post in question as it isn’t on topic for the thread. It’s a conversation you can have in PM. From what I can tell, no other posts of yours have been deleted. The forum isn’t being censored and never has been.
Panax Ginseng, Lithium Orotate, Boron, Cordyceps, Tyrosine, Red Maca, Horny Goats Weed, Tribulus, Shilajit, Naltrexone

U.K. members, please contact your MP and let me know!
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