PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
frhfu398hhf9hf3hf8
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Re: PSSD could be small fiber polyneuropathy

Unread post by frhfu398hhf9hf3hf8 »

bigpoppa10040 wrote: Thu Jan 13, 2022 8:15 am Honestly I talked to someone who has been on that forum for a decade and he believes they are pushing that theory for research purposes.
On which forum? Who are "they" who are pushing the epigenetic theory?

My opinion on the epigenetic changes theory is this: not all persistent changes caused by SSRIs have to be the mechanism of PSSD. We should compare PSSD sufferers to non-PSSD ex-SSRI users to know what the problem is.

Regarding the small fiber neuropathy theory. I knew since long ago that Dr. Healy believes in it but I refuted it immediately for two reasons:
1. I thought neuropathy can only affect only one place and not the whole body.
2. Some symptoms should necessarily be caused by brain problem.
But both of these reasons are likely to be invalid:
1. It turns out there is such a thing as POLYneuropathy which can explain desensitization of whole body.
2. Lack of bodily sensations can cause, for example, emotional blunting, as OP explained. Or lack of sexual pleasure and disconnection from body can lead to general anhedonia.
So the theory I now believe in is some immunity or gut related problem that affects functioning of nerves, but this does not necessarily mean that number of nerves has reduced. So biopsy may show nothing, but that would not mean our nerves work fine.

One question that remains open is what exactly is causing the nerves to not work fine and how could SSRIs cause this problem.
Northern_Star
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Re: PSSD could be small fiber polyneuropathy

Unread post by Northern_Star »

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.
Truskawa
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Re: PSSD could be small fiber polyneuropathy

Unread post by Truskawa »

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.
Do you think that same could be said about PSSD patients or does it only apply to PFS??
Northern_Star
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Re: PSSD could be small fiber polyneuropathy

Unread post by Northern_Star »

Truskawa wrote: Fri Jan 14, 2022 7:51 am Do you think that same could be said about PSSD patients or does it only apply to PFS??
Unfortunately, there is very little if any clinical research into PSSD. I cannot highlight enough how important it is to get actual research in patient tissue done by expert scientists in real labs. PFS or PSSD or whatever condition will not be solved by layman posting pub med abstracts.

That said, we suspect that PSSD and PFS have similar if not identical etiologies. We see very similar stories from PFS and PSSD patients, but also patients who took Saw Palmetto or Accutane. We have also collected questionnaires from all patient groups that show significant overlap in symptoms. Similar symptoms on their own do not mean much, but as it happens all these substances (Finasteride, most antidepressants, Saw Palmetto and Accutane) have anti-androgenic properties. And since the symptoms of all these patient groups are multi-systemic (i.e. not limited to a part of the body), it is reasonable to assume that what is going wrong in the cells of patients must be caused by a multi-systemic trigger. Proper androgenic signaling is obviously important on multi-systemic levels.

In PFS, we know from research that Finasteride is an anti-androgenic endocrine disruptor, we know that there are changes to the androgen receptor expression, we know that there are multi-systemic effects in tissues that depend on proper androgenic signaling, such as changes to neurosteriod levels, the microbiome and gene expression in penile tissue. The broad strokes are clear. In PSSD, we know that most anti-depressants have anti-androgenic properties just like Finasteride. And we see patients with similar symptoms to those of PFS patients. So, the beginning and the end of what I described for PFS are also true for PSSD (and victims of Saw Palmetto and Accutane). It is thus reasonable to explore the possibility that maybe all substances with anti-androgenic properties cause the same issues. Unfortunately, this is a hypothesis for now and will have to be confirmed in research. We are not there yet. But we highly suspect that this is the case.
Integra
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Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

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.
Why do you think pfs situation is not irreversible? I saw research, more than 4000 genes were changed. I understand your optimism, but still. It is possible that if the state is recognized in the scientific community, then 10-20 years and one could hope for something. But it is not recognised.
Northern_Star
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Re: PSSD could be small fiber polyneuropathy

Unread post by Northern_Star »

Integra wrote: Fri Jan 14, 2022 9:05 am Why do you think pfs situation is not irreversible? I saw research, more than 4000 genes were changed. I understand your optimism, but still.
I said I don't believe that it is irreversible in principle. Whether it is reversible in practice is up in the air. But I don't think it is reasonable to look too much in the future and despair because of challenges that we may or may not face. Let's cross that bridge when we get there. There are tangible steps that we can take right now that will improve our understanding of this condition. If we come to a point where we are out of options, there will be enough time for despair and self pity. But I am all for doing the best we can as long as we have options.

Regarding the thousands of genes whose expression was changed, I understand that this sounds overwhelming. However, genes often operate in clusters, i.e. changes in the expression of one gene affect the expression of a different gene. We hope to identify a far more limited number of key genes that affect those thousands of thousands of genes. Basically, some genes are master switches. If you switch them off, in turn you switch off all the genes connected to them. But you don't have to switch back on all switches if you can switch back on the master switch.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

That's all very interesting you wrote here. I just want to adress that we have to find the cause for the ongoing inflammation. Leaky gut produces chronic inflammation, maybe look into that.
And epigenetic changes is a deadly trap, epigenetics change all the time no mather what you do. You should come back to homeostasis if that's the case.
I also sense alot of resistance against the autoimmune/microbiom theory as if people don't want to find an answer and think it is something highly complicated only gene specialists can find out.
The gene thing is a trend and a rabbithole in my opinion. The microbiom autoimmune theory which result in neurotransmitter dysbalance or attack on these small fibers or whatever might play into this too makes far more sense.
Also sibo/dysbiosis patience often have sexual dysfunctions.
And the symptoms of withdrawal and dysbiosis are very similar.
KJP21
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Re: PSSD could be small fiber polyneuropathy

Unread post by KJP21 »

While I appreciate your detail and eloquence and agree with the tone you are taking, I must strongly disagree with your choice to suggest a likely link between the two disorders and your logic in doing so.

A link between PFS and PSSD was first suggested by Healy who is in no way a reliable or professional source. He has a very questionable past, runs an extremely unprofessional blog with sensationalistic comments and pictures, and has never done anything for the PSSD community. He consistently hypothesizes or goes further without ever conducting any actual research (any and all research conducted by Healy has been to simply summarize user submissions to his blog). He is out to make himself a name for being THE anti-psychotropic medication guy after being ostracized by the medical community for looking and acting unprofessional. It is important to note that this is true beginning of the hypothesis that PFS and PSSD are of the same etiology.

I’m not sure why Melcangi jumped on this bandwagon and wrote that paper about PFS and PSSD being the same based on user accounts. Maybe you can clarify the genesis of that paper.

Most importantly, however, is the very weak evidence you and these men have cited to speculate that PFS and PSSD are of the same etiology. PSSD shares much more in common with sensory disorders than it does with PFS. If we are using commonality of symptoms as the way to speculate, we should be looking at the connection between PSSD and neuropathy and/or autoimmune disorders. SSRI users experience immediate genital numbing upon use. This is not the case with PFS users. SSRI users also experience a ton of tingling, numbing and even joint pain upon initiation and withdrawal. You cite that SSRIs affect androgens. The research here is minimal at best and notes a slight decrease in testosterone. Which brings me to the biggest issue with your theory; females. None of the PFS research would explain female PSSD symptoms like clitoral numbing because those pathways are mostly independent of androgens affecting PFS.
Last edited by KJP21 on Fri Jan 14, 2022 11:42 am, edited 1 time in total.
Kostakonkordia
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Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

I agree with you @KJP21, Healy is not a reliable source. I read something from breggins wife ginger breggin that Healy still supports Elektroconvulsiontherapy... This guy is a lunatic. I wrote him about the connection between microbiom and pssd. He wasn't really interested and said "that already alot of people are researching on this".
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