Old members that disappear

General Discussion
#21

It’s difficult to know what to say to this. As far as I can tell, the culture of despair is categorised by us trying to put forward:

Building to a future where we are recognised, studies find out what the problem is, treatments are possible and Merck are dealt with. Who’s in?

The problem is that doesn’t match up with “I read about a guy who is selling some magic beans, so that’s the route I’m taking”.

The only reason to despair is putting all your faith, time and money into treatments that don’t work. Maybe ones that are harmful.

I understand why that is disheartening, but there’s no point in aiming to be the person who’ll be cured by the same treatments which failed a decade of posters.

Frankly, there’s no other way to think about this without either dragging this community into further mire.

We are the only group that got anything of substance done, and don’t be mistaken about that.

This is the best chance you’ve got. This is only depressing if you don’t join in.

The problem is that people don’t want to hear the inconvenient truth: that a bottle of supplements aren’t going to cure a severe health condition. Sorry.

The more people who come around to that way of thinking the better. The more people who focus on the dubious recovery stories, the hunches, the theories the further away progress gets.

The only source of despair here for me is the same implausible stories about gurus who claim to know how to fix this using herbs and other nonsense. If it’s true, then don’t post about it, just do it, surely?

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#22

I got better. I have posted many times and drop by a few times a year. My personal PFS was eventually discovered as low estrogen which most doctors will not test you for. Who tests for low estrogen in men??? I’ve actually had numerous conversations with multiple people here who also discovered they had E2 problems. TRT eventually fixed me but it was a very long battle. I even was on antivirals at one time just to try to fix this. Too many people come here and take one pill one month and another pill the next month and then something else the third…. Or try testosterone for 3 - 4 months and claim it doesn’t work. I learned that all this will cause a hormonal storm where it’s difficult to figure out what works and what does not. It took me years but pure testosterone injections with no hcg and no anastrozole fixed me. I eventually discovered I’m super sensitive to estrogen and just injecting testosterone every day sub q fixed me … I also discovered that TRT is a very long journey and takes a year at least to feel normal … i should point out that everyone is different and this was me and my personal journey but if you go to any weightlifting forum where people have screwed up their estrogen with androgens, they will complain of pfs type symptoms. A few years on T fixed me

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#23

Glad to hear that you’re doing better man, awesome that TRT worked for you!

#25

I keep in touch w a number of guys who no longer come here. I think the primary reason is just that they learn to live life with their symptoms and decide not to waste energy here anymore.

You get the same regurgitated theories and trials here over and over. This disease just sucks and it would be great if the Baylor study published so we could hopefully move on to the next step in this world we live in.

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#26

I think the ones who get better are less likely to remain posting here. You wouldnt hang around in a cancer support group after you recovered from cancer, would you?

#28

I very much disagree with your opinion, unless you have not personally experienced the pain of this disease, if it were me, I would more or less post something in the forum. The possibility is that fewer people recover. So don’t lie to yourself.

1 Like
#29

Spent hours in posts from users from 2003 to 2013
Most of them are gone cause they recovered or get quite quite better.
In the past, was almost the same as now, they were in the hell, angry, hopeless…
So that theory where 85% of the users don’t come here anymore cause acceptance seems disproven.
Board would be like a full stadium if otherwise.

PD:
Some haven’t recovered or have remaining symptoms still ongoing. Is true.
But vast majority have overcome the syndrome.
Mean time of recovery is 4-6 years.

#30

Nonsense. U are taking some hypogonads as the cases of pfs. Show me one guy who wasn’t responding to hormones (or felt bad on hormones) and got cured, just one guy.

People here are still confused between fin induced hypogonadism and Post Finasteride Syndrome where the guys ability to respond to androgens just disappear.

1 Like
#31

This is not necessarly true.

In my opinion a good portion of this community is biased. They’ve decided the answers is in our gene/epigenetics, and that’s it till proven otherwise. So pretty much everything that doesn’t point directly to our genetics … is automatically crap.

The problem is this theory was never proved.

What we know for sure, is that a lot of people largely benefited with supplements of any kind.

Chances are, supplements won’t cure you. You are right. But a lot of people in here feels way better on a supplements then off it, and we react very differently to the very same substance.

Is Vitamin D effective in PFS? The answer is yes. And no. And also abosolutely not.

@spstriken swears by it, he’s been taking it for 10 years I guess, and he went as far as to say he’d be dead without it. @numbduck claimed his “90% recovery” was largely triggered by experimenting with Vit D, and there are many users who experienced benefits from it.

Now, the majority of the users who tried it didn’t feel any effect, and then we have those who reacted badly to it. I think @axolotl reported a temporary worsening after a 25k u dose, and @Demon experienced a nightmare crash he hasn’t recovered yet from.

This applies to virtually any kind of supplement.

I’m not claiming supplements are the answers, but a lot of people could benefit from the right one. @Jorden and @mariovitali claimed to be 100% recovered, and go read their stories and how many supplements they took.

Which one’s the right one? I don’t know, and we should be very carefull experimenting with them, because a lot of us got a lot worse on a variety of stuff, like @awor on Milk Thistle, @AnhedonicApe from betaine, @Demon on Vit D, @Rb26dett on TRT and tribulus I guess, another users on Vit K2 and so on.

There is no straight answer with PFS.

2 Likes
#32

I Just proved the effect of a Benzodiazepine make me awake from totally sleeping in a concentration test of 10 minutes. IT was a neurochemical effect. Blocked receptors and Genexpression you cannot alter. But Neurotransmitter and Hormonlevels you can Change. Maybe some Gen Modulators like Chrisper will can once.

#33

In the US ist’s very easy to kill themself, because of the firearms and Pistoles in every Household. In the Rest of the world suicide ist rather complicated. So I Thing Like you.

#34

This I agree with.

Unfortunately, the bias I see is that most people are so desperate for a way out, understandably, that they are prepared to believe that vitamin d, broccoli and cold showers are legitimate treatments.

There’s no shortage of posts claiming to have worked out the answer. It’s not like people are being silenced. It just feels like there are a growing number of people who are sick of these protocols remedies and treatments that don’t work being brought up on rotation.

There is barely any evidence that those who have improved have benefitted from these substances and activities any more than the passing of time. That is to say that I don’t think there’s any evidence that doing nothing at all helps fewer people than endless experimentation. Doing nothing has the advantage of not being a risk to worsening people’s condition too.

A treatment plan that has a record that is worse than doing nothing. That doesn’t sound like something we should be prioritising.

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#35

Vitamin D has positive effects on a variety of conditions, often times serious ones like psoriasis and multiple scleroris. And once again, if we have people reported benefit from it, I don’t see any reason to believe they aren’t being honest, or maybe just experiencing place effect.

The bias in obvious. Against supplements, against gut healing, against diet and lifestyle changes, and in general against anything that isn’t genetic/epigenetic related.

What about those who were stuck with PFS for years and then improved with supplements? Or those who got improvement almost overnight?

How come if I take a given compound and I crash, that’s obviously the compoud, but if I take the same substance and I experience an improvement is placebo effect?

1 Like
#36

Well, the reasons that people develop pfs are unlikely to be related to nutrition or exposure to the sun. So that’s one thing that suggests genetics and or epigenetics are a good avenue for investigation.

Supplementation and exercise haven’t proven themselves to be reliable treatments. We have over a decade of posts on the subject.

Those are fairly strong examples to favour one direction over another.

I’m not sure why you’re banging the drum for continuing down the same road that hasn’t delivered good results. At this point nobody would say that self experimentation has been successful for even a fraction of people here.

If I wanted to make sure PFS was an eternal mystery and an affliction for life, I would be trying to make sure that no scientific research took place, which is what you’re doing now. Whether you mean to or not, attempting to say that vitamins and lifestyle choices can cure this will mean fewer people will step up with our projects.

Really, if you believe so strongly that supplements and lifestyle can cure this then the obvious question is why don’t you go do it? We have over a decade of experiences for you to draw upon here, you surely don’t need any more people to experiment on themselves, enough people have done it already. Anyone who believes they can get themselves out of PFS would not worry about the expense so I assume there is no barrier left to your success.

So, good luck.

For the rest of us, this is the time to change this community’s direction to something that will benefit everyone, not just a few people whose dubious accounts of restoration are dredged up repeatedly. If diet and supplements were a real option for everyone, we’d have more success stories and fewer tragedies.

I think people forget how high the stakes are. Some people have died over this. Someone we know is in hospital right now, unable to function in any meaningful way. Saying “no let’s just continue down this same old road we’ve always gone down” and then feigning outrage if you get challenged is more significant than it might initially appear. It is something that prolongs the agony and conceivably could cause people to take their lives.

2 Likes
#37

It is not your position to decide whether your data is useless. Many people probably added datapoints that are somewhat incorrect. The entire point of a survey is to collect a lot of data points so that patterns arise in the grand scheme of things. You may feel your trajectory and experience was different than others, but the survey has such questions about previous/other medical conditions and drug intake as well.

I still think you should do the survey. It does not matter if your data is slightly different. It does not skew anything.

2 Likes
#38

I am not talking about why we develop the syndrome, but what we can do to relieve the symptoms.

There are reports all over the forum. Often times they just get overlooked and obviously outshined by the users who report bad reactions to the same compound. That’s just human nature: 10 positive reports are not enough to convince people, but one negative story will scared the hell out of most (me included).

The other day I was reading @M_C thread and he commented his Vit B12 supplementation by saying “I just can’t do without”, pointing at the mental relief he’d get. He didn’t say “wow, I’m kicking PFS’ ass thank to B12”, he just reported a (marginally) easened condition to deal with.

Because a lot of people have reported substantial benefits, and I mentioned some of them above. I’m not saying “go experiment”, and once again I know it can be very risky, but why should we discredit all those stories?

Personally, natural Vitamin C did wonders for my nails, in a span of … a week maybe? And you know what? Psychologically it was very good not to have messed up nails under my eyes all the time. Did that turned my situation around? Nope. But still, it’s good.

Nope, this is what you got out of what I wrote. It’s not what I mean and, personally, I really can’t see the day when a study is published saying “guys, the answer to PFS is supplement X”.

Once again: supplements of any kind have benefited some people. Their stories are on the forum. So what I can’t get is why would you discredit those stories. Not claiming Vitamins and minerals are the cure, but if some of us get symptomatic relief with certain compounds, why would you dispute that.

They can be beneficial, they can be harmfull, they can have no impact, but why would you accept just the last two outcomes?

That being said, the best bet we have at this point in time is research. That’s obvious.

But that doesn’t make what I said any less true.

You are trying to switch the focus from what YOU said, to some speculation around my persona.

My point is this simple: if we have stories about people getting better on supplements, what gives you the right to say supplementation is a wortheless path?

1 Like
#39

Look, I’m not trying to start a fight here.

As long as we don’t discredit users reports I’m fine.

#40

We should not allow people who don’t take the survey to use this forum. Many duplicate accounts have been coming here lately to proove their brosciences.

#41

Since I’m just reporting other people’s stories, I guess you are referring to them as broscientist.

All I’m saying is people have reported benefit from supplements, as well as worsening and unchanged condition.

Can you prove me wrong?

#42

Can you take the survey?