PSSD could be small fiber polyneuropathy

This is for hypothesis and even educated speculation.
Kostakonkordia
Posts: 27
Joined: Thu Jan 13, 2022 3:33 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

I would really suggest all of you to read the microbiota theory from lastround360 on reddit. We need knowledgeable people like you looking at this stuff.
Below are the two microbiota articles from lastround360:

The first article:

https://www.reddit.com/r/PSSD/comments/ ... urce=share



The second article:

https://www.reddit.com/r/PSSD/comments/ ... urce=share
bigpoppa10040
Posts: 33
Joined: Fri Jun 04, 2021 6:49 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

Hey guys two of my posts got deleted on this thread for no reason wtf??

Anyway I was supporting CD saying how there are indeed members who bought into the epigenetic theory and we all know treatment for that, if true, is beyond years away and most likely won’t be for our condition. I have two friends from propeciahelp who bought in so much that they feel it’s a hopeless situation and I had to talk them out of you know what. This isn’t to say propeciahelp hasn’t been instrumental at getting PFS PSSD PAS on the map and a recognized condition. There is no denying that and the immense importance this has. HOWEVER: this does not mean that their theory is correct.

You can cause epigenetic changes by taking vitamins, staying up longer, etc. What I do know is had doctors from Mayo Clinic and UPenn conclude this phenomenon we all experience is an immune related event. Over the course of all forums, people have gotten relief with immunosuppressants, corticosteroids, when they’re sick, when they stay up late, etc. People crash OFF the drug sometimes, symptoms vary for others.

So many members completely disagree with the direction propeciahelp is going with the epigenetic theory. I hope it works out and I’m very grateful for them but this is the truth.

Everyone with a brain or experience in the medical / research world knows they’re pursuing the epigenetic theory cause this is how the get actual money and research funding. No one wants to fund research into an unknown autoimmune disease that could leave the makers of these drugs full of legal liability.

Our condition is hallmark autoimmune / immune related and I’ll stand by that till I die along with other doctors and forum members. The fact that this potential etiology is disregarded is horrible and suspect. The hardest part about identifying autoantibodies is you have to actually know what you’re testing for. Any researcher will tell you that. If you’re in the medical field and have anything beyond what the med school cult has taught you, you’ll know that simply running autoimmune panels to make a diagnosis is negligent. Anyway I stated my peace. I hope one day SOMEONE is correct but this thread is focused on what the OP posted
Integra
Posts: 89
Joined: Wed Dec 08, 2021 1:50 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

Kostakonkordia wrote: Fri Jan 14, 2022 11:09 am 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.
Our situation is very complicated. We should do research about genes as pfs community. Trend at now is sibo, cause even his author said people they should concentrate on pathogens, not just sibo. Symptoms of withdrawal and dysbiosis are not similar.
bigpoppa10040
Posts: 33
Joined: Fri Jun 04, 2021 6:49 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by bigpoppa10040 »

I think this thread is based on what the OP thinks it is coupled with autoimmunity / immune system related.
Frog
Posts: 263
Joined: Sun Feb 24, 2019 2:37 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Frog »

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.
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!
Kostakonkordia
Posts: 27
Joined: Thu Jan 13, 2022 3:33 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

Integra wrote: Fri Jan 14, 2022 11:42 am
Kostakonkordia wrote: Fri Jan 14, 2022 11:09 am 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.
Our situation is very complicated. We should do research about genes as pfs community. Trend at now is sibo, cause even his author said people they should concentrate on pathogens, not just sibo. Symptoms of withdrawal and dysbiosis are not similar.
Ok look for genes if you think thats the answer. I never said sibo is the cause. Dysbiosis is general disbalance.
And yes withdrawal and dysbiosis/leaky gut have similar symptoms...
Kostakonkordia
Posts: 27
Joined: Thu Jan 13, 2022 3:33 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

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.
Last edited by Kostakonkordia on Fri Jan 14, 2022 12:58 pm, edited 1 time in total.
Frog
Posts: 263
Joined: Sun Feb 24, 2019 2:37 pm
Contact:

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.
If you’re discussing what could cause potential neuropathy then there isn’t a problem as that is on topic. That’s why my post wasn’t aimed at any one individual.
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!
Kostakonkordia
Posts: 27
Joined: Thu Jan 13, 2022 3:33 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Kostakonkordia »

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.
I would find it nice if we would all work together and create a research group or something. I'm already working with lastround360 from reddit on the microbiom thing.
Integra
Posts: 89
Joined: Wed Dec 08, 2021 1:50 pm
Contact:

Re: PSSD could be small fiber polyneuropathy

Unread post by Integra »

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?
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest