Sometimes I ASK myself: Do you really want to hang arround without any Motivation, without Sex and Partner, without Friends for the Rest of my live. I’m Not 20 or 30 Im 60 and I’ve lifed my live.
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Look for different types of rewards out of life @Exsexgod living in the past and looking for the old you everywhere with reminders is no good. I understand that you are still in shock and are in a tailspin/stuck on the ever turning hamsterwheel.
BUT u need to
Change things try volunteer work do things for others. The look of gratitude making a difference to someone else’s life is priceless. It’s changed me and given me a purpose. I miss my old life big time, the intimacy, the laughs, the buzz, etc but with this I know I’m still worth something and then there’s my son and for you you’re daughter. U are richer than u think. We still have lots to live for despite the huge challenges
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Why don’t you look into doing what Ozeph did and/or read Sinclair’s book and epigenetic reset recommendations?
It seems our problem might be epigenetic. There are scientifically proven ways to reverse epigenetic damage. David Sinclair, a professor at Harvard, has published both books for general public readership as well countless in depth scientific papers on this topic. Ozeph has had about the most credible recovery of anyone I have seen in this community.
Why not just do epigenetic reset like Ozeph has? Why tell yourself hopeless to do anything until CRISPR? Is that even a valid assumption at all? What’s wrong with intervention recommended by Sinclair and succeeded with by Ozeph?
Hi ! My name was mentioned and I got notified so I might as well jump in.
First, I’m not cured. I’m almost symptom free but I’m still plagued with some degree of insomnia and occasionally it’s bad enough that I get a bad day with brainfog. I was better 2-3 months ago, but I had to undergo treatment for a stubborn tapeworm and it got me back to where I was a year ago (I’m 3 years into the diet and 3 years and 2 months after my initial crash). I doubled the efforts and I’m going back to where I was. All my sexual symptoms are gone (I had sex 3 times a few days ago) and morning wood is almost a problem: it seems to be the cause of my insomnia. I always wake up while having an erection or already with one. They last for hours and it’s hard to sleep until they’re gone (I say they because I have multiple ones in the morning)
It’s my understanding that our androgen receptors are either over expressed for those who got sick right at the start with a few pills. That would be because the androgen levels suddenly dropped and the epigenetic system made the AR more sensitive to compensate. Or in other cases, the AR were silenced. That would be the case for long term users of fin, the AR first became more sensitive but it didn’t make them sick and then when they stopped fin, the AR were overwhelmed by a return to normal of androgen levels so the epigenetic system silenced them. That would explain why some of us react well to androgens and others to estrogen. It’s just a theory and I’m probably oversimplifying, I think epigenetic changes on a small scale takes place every day and in all sorts of ways.
Either way, the damage is done to the epigenome, which is not the DNA itself but the DNA reading system and the solution, IMHO, is the same: sirtuin proteins to regulate demethylase and acetylase enzymes.
I posted links on multiple thread on tricks to repair the epigenome. Dr. Sinclair has good research on this, but he’s a doctor, filing pattent, and is into supplements as well as the natural stuff.
I will try to contact a German epigenetic doctor who’s currently in Singapore. I’ll inform you if I get good advise from him.
I’ve read our condition as being a polyglutamic toxicity or a glutamine complex toxicity (same thing, different terms). L Glutamine is the most abundant amino acid in the body so having it deregulated has an impact on multiple systems. In my case, I clearly have excess glutamate, which is the excitatory neurotransmitter, and it leads to low GABA which is its counterpart: an inhibitory neurotransmitter that promote calm and reduce anxiety.
Insomnia, anxiety, panic attack, muscle spasm, speech slur and surely more, all has to do with low GABA and high Glutamate.
I’m currently studying and experimenting on ways and supplement to lower Glutamate and raise GABA. Still too early to post.
But bottom line, the diet and the tricks are natural and don’t seem to make things worst so why not try them ? Either it doesn’t work or you get some results. Be careful with NMN (nicotinamide mononucleotide). I’ve had good results with them, I’ve read a success story from someone who took those but at least two people reported dysphagia with it. (problem swallowing)
Supplements are always to be careful with or taken at your own risks but exercise, diet, cold shower and saunas are not, in my opinion, a source of danger for the vast majority of us.
I hope this is a positive contribution on the subject. I can explain more of my understanding of the epigenome. Keep in mind I’m just a normal dude with a background in science and I studied those things as frantically as anyone sick on this forum, but it doesn’t mean I get it right. I’m just doing my best to help both myself and others if I can.
I wish you all the best. I’m still convinced we can get through this with time and some specific efforts in the right direction.
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The epigenetic regulation seems to be reversible. One keyfactor seems to be the overexpression of the Androgen Rezeptor Gens and the silenced receptors in the Brain and in the tissues. Is there any posybillity of reset.
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Dear @Ozeph how long do you hang in with pfs allready. After what period of Frustration did you start up your recovery activ?
There’s a success story after only 10 months. Most are between 4 years to 6 years but some cured themselves after 12 years, 20 years.
Many of us had suicide idealization
I know I did and it comes back sometimes. I ignore it, I know it’s the disease that does that, it’s not me.
I believe if we start diet, exercise and tricks to repair the epigenome sooner, we get results sooner.
There are other diseases that are epigenetic and people on this forum are here from taking different drugs so it’s not just post finasteride syndrome. The commonality is the epigenetic damage. Note that the epigenome is meant to adapt to circumstances as we go through life. I say damage because in our case, the modifications made us sick.
There actually exist a drug that erases the epigenome, but as we speak it’s only for mice and I’m not sure they survive !!! 
The key, I believe, is to address the epigenome in general and the tactic is to put our body in repair mode. Those are what the tricks do.
The diet and exercise are preparing the body so that the tricks are more efficient but I have to say, the diet relieved me of 2/3 of my symptoms in 2 weeks so it really does not take a decade to improve.
I had pfs for 3 years and 2 months, but I started the diet after 2 months only. I’ve been on this ketogenic diet for 3 years. I started very fast because I have 3 children and the only thing I could think of was killing myself and that is unacceptable. I will never give up on my children. So I had to find a way.
To be honest, and sorry for the atheist that may be shocked by this, I prayed God to show me a way (well, my version of God anyway, I’m not very religious) and in the next week I had 3 different persons telling me I should change my diet and go on a full carnivore diet. I believe this was my answer and did the diet.
You don’t need to believe in God. This can just be coincidence but it worked for me. I suggest doing the diet, some intermittent fasting, some exercise when you get better and do the tricks to repair the epigenome. Some are easy, like taking a cold shower or a hot sauna (or both, from the sauna to the cold pool !)
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What makes you think that ‘repairing the epigenome’ will demethylate the right part of the epigenome? Unless it’s a targeted epigenetic therapy I fail to see how that’s possible.
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The sirtuin proteins do the targeting, that’s one of their functions and this is why we need to produce them. Every living cell on this planet, even bacteria and plants, can generate sirtuin protein when under stress. The tricks are to provoke that stress in an acute, but short period of time (can be longer if fasting).
The carnivore diet is meat, animal fat, salt and water. No more. A paleolithic hunter’s diet.
After getting better, I started adding some very low carbs plants, but almost all my calories are from fat, then from protein. That creates BetaHydroxyButyrate (BHB) and raise the natural NAD+ levels in the body. NAD+ and BHB work in synergy with sirtuin proteins to repair the epigenome (acetylate the histones and demethylate silenced genes).
BHB and NAD+ alone may improve someone’s condition but the repair really takes place with the sirtuin proteins.
I’m 53 and this therapy has made me look much younger than 5 years ago. I tell people I’m 35 and they see that as normal. Wrinkles and freckles have disappeared. Those are caused by epigenetic damage (as is aging).
They gave mice as much food as they wanted, but only every two days and the mice lived 80% longer. According to what I read, intermittent fasting does reduce and repair epigenetic damage. (also creates stem cells, new brain cells, growth hormone and this wonderful autophagy that makes the body eats up unhealthy cells)
I’m eating once a day, and take all my proteins within 1 hour. Proteins create MTOR proteins and the MTOR shortens life, It’s better to have normal amount of protein and get the rest of calories from fat. Palm oil and ghee works well for me now.
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I’m just gonna chime in here, I don’t think AR overexpression is the core of our issues but rather a symptom.
The GABA system is probably not affected either (per Baylor study). But rather there is abscene of positive allosteric modulators (Allopregnanolone) and instead a rise in negative ones (mainly DHEAS).
As we know from Melcagni that 5AR metabolites are absent from the brain, but it’s not due to methylation of the gene. It’s something else that suppress our 5AR.
I think this is why AR won’t downregulate as it should, androgens in excess should lead to downregulation just as it got upregulated due to low androgens.
Again according to Baylor studies we don’t have any polyQ disease, but I think they only checked for CAG repeat, and there is others so it’s a possibility.
When it comes to mTOR / coloric restricting and longevity then what you’re saying it correct. But it’s a trade off where you give up performance.
In life there is this spectrum with performance on one end and longevity on the other. So depending what you want out of life, you’ll have to live your life differently.
But I agree with you Ozeph, and the way is to stress the body in different ways to make it adapt towards a better state.
But since we have no idea what kind of stimulation will induce the right adaptations it’s really hard for a cookie cutter protocol.
But the Baylor study and the gene expression differences they showed echoes very well with the different kind of issues most of us here display.
Stuff like decreased bone, connective tissue, sensory organ, blood vessel development etc.
Also increased reaction to stress, metabolism of RNA, disregulated immuno-signaling etc.
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Thank you for your feedback @Cbrandel !
I have read Melcagni’s study as well as Baylor’s. I’ve read that "The pharmacokinetics of finasteride and dutasteride are as such that they are nearly irreversible inhibitor of 5α-Rs, with slow rate of dissociation, leading to a long-lasting effect of the drug, regardless of dose administered. " (ref. below)
This would be why allopregnanolone and 5a-THDOC are not metabolized properly (5ar and 3a-HSD being needed to metabolize progesterone into these neurosteroids).
On this approach, one that is not so natural, I tried to estimate the electromagnetic potential of finasteride. Maybe it can be attacked on site with specific ions, either positively or negatively charged. I looked at the finasteride molecule and it’s composed of too many atoms for me to calculate and figure out its electromagnetic potential profile. It’s above my paygrade.
Some people have reported some degree of success with sodium bicarbonate, making blood PH more alkalin. Maybe it affects the 5ar producing cells.
Another way I though could be used it to fast and boost autophagy, with the objective of having our body identify the 5ar producing cells as senescent, destroy and replace them. Would that happen ? I don’t know but some people in the success stories have succeeded in getting a prolonged recovery through fasting.
Nonetheless, there was the story of a guy on this forum that took the opposite way: he took proviron to boost DHT for a few months, even though it was making him very sick, in an attempt to de-sensitized his AR. Although I think it’s dangerous, I am still very intrigued by this approach. He claims having success with this method. Still, I wonder if it would not be dose dependent and when proviron was stopped, androgen would go down and AR become hyper-sensitive again.
What’s your opinion on these leads ?
reference: https://www.fertstert.org/article/S0015-0282(19)32599-3/fulltext
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I’ve had some success with the latter approach, although I can’t make a blanket recommendation for it because: (1) some guys are more at risk for having a dangerous response to it, (2) if you’re not on TRT, it will most likely suppress you (think crash), and (3) too many people here get their shorts in a twist when DHT compounds are mentioned.
Proviron@50-200mg (with TRT) didn’t make me feel sick though…I actually felt slightly better while on it, crashy when I came off, then a modest improvement from baseline (maybe 25%) about 2 months later which has stuck. Based on my personal response to it, I plan on trying more DHT (Mast/Proviron) and higher Test doses in the future when my fertility is off the table.
I’ve also had some success with Probiotics (Seed), ALCAR and anti-androgens like rhodiola, ashwagandha, and SJW. So there is definitely something to these compounds in terms of their effects (demethylating ARs?). However, I find that just about everything (whether an drug, herb, fasting, etc.) must be CYCLED to get the most benefits.
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Thank you for sharing !
It is not clear to me if we all have oversensitive or silenced AR. Maybe some have oversensitive AR and others silenced AR ? That would explain why some react well to androgen while others react well to estrogen.
ALCAR, anti-androgens like rhodiola, ashwagandha, and SJW all have bad effects for me. I’m learning from you that they are anti-androgens, On the opposite, I take androgen herbs like pine pollen, tribulus terrestris, hornygoat weed and tonga ali (longjack) and I react well.
I’ve taken fin for almost 20 years with no side effect I know of the first 10 years. In the end, I was having insomnia and a few other symptoms. I stopped, I crashed, and I believe my AR got silenced by the sudden rush of androgen. That would explain why I react bad to anti-androgen and well to pro androgen.
Maybe the way to heal ourselves is counter intuitive ? What if I have silenced AR ? The way to re-sensitize them would be to be low on androgen so the body has to tune the AR up. I would be sick at first from lack of androgen response, and become better as my AR become more sensitive ?
The guy that says he cured himself took DHT boosters to overwhelm his oversensitive AR. He was very sick and then may have tuned his AR down to normal. After he said he felt better.
If it was counter intuitive like that, most people would have stopped at what would make them feel bad, like boosting DHT on sensitive AR or depriving silenced AR from androgen. Having stopped as soon as they felt bad, they would never have tried it to the the point of enabling a change in AR sensitivity.
Their story would not be here.
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I don’t think it’s simply a matter of being low (or high) on androgens. I’ve gone extended periods of just having really low and high T, and it never helped anything long term. My DHT has never tested low, so I guess it’s possible that metabolites like that could have remained too high for healing while my T was low…
It’s a goddamn pickle. I tend to react negatively (crash feeling) to some pro-androgen things like trib, hgw, tongkat, creatine, heavy weightlifting, etc. and positively to others, like trt (dialed dose), Proviron, etc. I think both AAs and PAs have the potential to demethylate us.
I also think there’s a lot of merit to the “push through the pain until you re-sensitize” approach. I just don’t have that kind of time off work. However, doing this with herbals, creatine, etc. would be the safer option for those that do. Like find a pro-androgen supplement that makes you feel like total ass, and load the F up on it until your AR receptors give up, demethylate, whatever, and you feel better?
And then of course there’s those guys who do something pro-A like trib or trt, and then mix in an anti-A like SJW, and get positive effects they never got by either one alone. Btw, ALCAR is pro-androgen…and it mixes beautifully with Rhodiola (anti-androgen) for me.
Anyway, there’s no single iteration of PAs, AAs, cycling, pushing through, etc. that’s going to help every PFS sufferer, but there is definitely a recurring theme in this general area, so I think it’s up to us to experiment with each to find what works.
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Pushing through the pain is only a good idea if it’s a push in the right direction. If it’s in the wrong direction, it ends with more persistent pain.
You’re right, we’re all different. But at the same time, there’s those who crashed after just one or a few pills, and those who took thousands with no problem and crashed when they stopped.
The general theory, as I was aware of, was that we could take fin for a prolonged period of time with no problem. I presume the sensitivity of our AR would have tuned up without going off the top and creating a system wide failure. Then we stop fin, androgens go back to normal, which is now too strong for sensitive ARs, they get silenced and for those who crash after stopping, the epigenetic changes makes the body go off the top at that point (which is far from being what happens to all fin users that stop).
But this theory cannot apply for those who crashed after a single pill. For those, my guess would be AR hypersensitivity as soon as androgen drops and the body goes off balance at that first time. There’s no delays before a crash for the one pillers.
I guess there could be variations on those extreme: One guy takes fin for a few years and his AR do no get more sensitive but when he stops, they’re overwhelmed and silenced.
Or another guy takes fin for a few years, his AR do get more sensitive and when he stops his body becomes off balanced from having sensitive ARs with normal androgen.
Did you crash with just a few pills or after a long time of taking fin, then stopping, having a 3-4 weeks holiday before pfs gets to work ?
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I took Fin for a year, then switched to Dutasteride and stayed on that symptom-free for about 5 years. Then, I started noticing mild symptoms like puffy nips, a little fatigue, slight muscle loss, and my skin didn’t want to tan anymore. After about 6 months of that, having no clue about what PFS was, I simply decided to get off of all drugs (which also included an SSRI, Paxil) thinking I would feel better from that. Well, I didn’t get a holiday…just the paradoxical downward spiral of all sorts of nasty symptoms spanning just about every system of my body. Thinking it was certainly a was the result of a well-defined (even if rare) medical problem, I went to dozens of doctors, specialists…took me a couple of years before I came across “PFS.”
So mine could be characterized as a modest onset while on the drug, then a long progressive “crash” for many months after quitting.
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@Renegade how long have u been drug free and have u made any improvements over time. Took me a long time to discover pfs too.
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Been ARI drug free for about 12 years now. Yes, I’ve made lots of improvements due to various things (time isn’t one of them).
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