Is it all a pipedream


#1

Is it all a pipe dream this trying drugs and supplements to find some sort of cure.
If you go through all the posts on this forum you will see everything and the kitchen sink have been tried and tested (literally) again and again and again.
Surely by now we should have a grip on what at least helps to some degree and created a list if these things.
Would we be better off just donating the money to the pfs foundation rather than wasting money on trial and error cures that every man and his dog has had a stab at.
Money speeds things up it doesn’t mean it will happen tomorrow but surely it will bring us closer in a shorter time scale.


#2

It will be very tough… our symptoms can easily be pass as depression to doctors, who could give two fucks whether or not we agree with them. This is obviously soo rare that doctors can just blow you off ,and people give up, or people are too ashamed to go to their doc about it or speak up about it!


#3

basically just sports betting everyday hoping I’ll win 1 million dollars so I can buy some kind of small house in the woods and get a dog and live out the rest of my sad life. I think I can survive the rest of my life like this , I just need to be far away from everyone where I dont have to answer to someone all the time. “whats wrong” etc ffs…


#4

That would be dumb, sorry. If I would win 1 million I would give it to melcangi or some other scientist so they could fix PFS within a short time.


#5

lol , and you think some scientist would figure this out, you people know they thought the appendix was completely useless up until 2007…


#6

It’s a difficult one really, it comes back to whether its persistent or permanent? And because that poison has done different things to our bodies, and while everyone can or has potentially responded differently to treatments I wouldn’t come down on it one way or another. I’d like to think there’s still hope, but it’s hard to keep the faith.


#7

well put it this way, i did not get it from fin/prop/accutane/ssri! So maybe it is something else that is not permanent? I have met someone on allthingsmale who is in same boat as me after going on paleo diet!!!

Low e2 can cause genital numbness as well…


#8

I think trying things individually is useless. It needs to be done in the context of a study. That’s why I think we need to fund a rat study testing treatment protocols.


#9

I’m hoping the prep works for someone else bc if it does I’ll try it too, also, the fact that some people are effects some aren’t, gotta be a fix


#10

For what it’s worth, my appendix burst earlier this year, and while physically I seem to have recovered fine, the PFS symptoms, which I’ve had for a decade, have increased substantially. I’m not sure if there’s an association there, but thought it was worth mentioning.


#11

I wouldn’t even donate it to melcangi. The source of the problem is with receptor signaling which has obvious downstream effects every where else (especially the three things i’m about to name), but he believes he believes the problem to be with the 5ar enzyme, gut microbiota, and low neurosteroids.


#12

Possible reason sodium bicarbonate improved my feelings so much…Helps androgen signaling and binding at the receptor…


Organic Baking Soda Helps!
#13

That’s interesting indeed, @holyhead.

Could you tell us how much you use and how often?


#14

Teaspoon couple times a week it varies…I noticed after a couple of days of doing this I started feeling more normal and the crushing mental anguish became less and less…I put a thread here about it…

Also at least Melcangi will say what he believes and gives updates and talks openly about the conditions…His studies have progressed swiftly…one reason is he is not in the US I believe and doesn’t give a shit about Merck or Fda…


#15

Thanks Holyhead! I know you put a topic about it but I’ve never been able to find this information before.


#16

I am so glad that Melcangi is working on things.