Have sent you a PM.
@JustTrynaMakeIt I’m up for that. I try to be very proactive. Good call! However it must be extremely difficult for the mods ringmastering stuff trying to police the forum responding sensitively and fully to each and every query etc with very small resources.hats off to them.
checking in for first time in a year or so. will be my last log on
have a new gf, feel great and have a normal sex life, have the occasional bad period every few months but have cialis ready just in case, these are getting very rare
my advice
- stop obsessing on this forum
- start living your life, it gets better over time
good luck
I’m glad you’re feeling better but it’s really not that simple. Some patients on here are extremely severely affected and can’t just get a girlfriend, have a normal sex life and resume normality. None of us are here by choice and if what you’re suggesting was an option for everybody I’d imagine this forum would be far more sparsely populated. Improvements can be seen in some patients but many aren’t that lucky and only deteriorate over time. You should count yourself fortunate as you’re not representative of the issue as a whole.
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yup was expecting one of those responses
i can assure you i was as severely affected as others, for the bulk of 2 years i was totally impotent, you can read all my historical posts, for a period even cialis wouldn’t work
some people on here think severity of symptoms is a competition. bottom line, if i can get better anyone a can, not saying everyone will, but do think your attitude of “im worse affected than everyone and therefore never going to get better” is probably not the right starting point
also another tip…there are many girls out there who are very understanding re sex problems , you just have to be willing to put yourself out there and meet one
not engaging in a convo
There are people here with no AR activity whose entire bodies waste away so severely they are hospitalized and bedridden. Skin, muscles, vision, teeth, sleep, digestion, respiration, circulation, brain function…all destroyed. It’s not a competition, it’s an indication of what’s damaged. I had a distressing side that also resolved after two years but I did not lose all my collagen and muscle mass and have skin lesions that never heal and kidneys not functioning properly and lose the ability to respond to medication or exercise. I didn’t even know that shit was possible because all I ever read about was erectile/libido problems.
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ED is not a life threatening symptom, most of us severe sufferers don’t even care about girls or sexual sides anymore… try being bedridden for a day without being able to walk without losing balance and u will understand what a severe sufferer means.
I am not engaging in any convo as well but enough is enough now, claiming PFS can easily be cured with some mild ED symptoms is what happening here since 2 decades.
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hey man, you might have good intentions
but telling people not to take this place seriously harms us because we are literally making material advances towards finding an actual scientific solution
putting your head in the ground like an ostrich and saying “ohhhh it will get better i just have to eat healthy and exercise” only works for a lucky few
the rest of us have to face reality and attack our situation based on that to get past this one day
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the only reason im posting is for any other young men who find themselves in the same position as me after crashing 6 years ago, I came on here and read some posts like the ones above and convinced myself my rlife was over…not helpful
My symptoms were not “mild” I was totally fucked.
The reality is, there is no silver bullet and I didn’t say getting fit is a magic treatment, but getting better is definitely possible with the time being the biggest factor. Your life is not over and things will get better
I challenge you to look at the number of accounts on this forum who used to be serial posters and then just disappeared…there are 100s. Likelihood is. large portion recovered and escaped this place
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I agree and disagree with the original letter. (top of the page)
I’ve also come to the conclusion that no drugs, herbs or supplements could cure this diseases. I’ve read researches and I think it is agreed upon that the disease is epigenetic in nature. Our epigenome is messed up.
So what is the epigenome. Here’s what the Center for Disease Control (CDC) has to say:
They say and I quote: “Since your environment and behaviors, such as diet and exercise, can result in epigenetic changes, it is easy to see the connection between your genes and your behaviors and environment.”
Diet and exercise… Sounds familiar to me…
Anyhow, we have almost 15 years of people posting. There must be tens of thousands, if not hundred of thousands of posts. Unless you believe nobody ever recovered from this disease, I believed and tried compiling success stories and try to see commonalities.
That is science by the way. Science is not something you need to spend years studying in a university. It’s a simple approach, formulated some hundreds of years ago, as a protocol to set aside the fallacious ideas for the true ones. Children can do science if they follow the protocol objectively. They won’t find a cure for us but they may come up with some true objective conclusions about ants behaviors that are scientifically sound.
I found that the most common factor in all recovery stories is time. I also found that diet and exercise, although not always, was present in a large amount of success stories.
I’ve read that epigenetic changes can take place from having a stressful relationship, exposure to chemicals and a near infinite amount of causes. The epigenome is a system designed to adapt an otherwise rigid DNA to the ever changing circumstances of our lives.
That means, for example, not everyone taking fin will have had the same epigenetic changes to start with and it will be applied to a DNA that also varies from person to person. Many will not develop any diseases from fin (although I don’t have statistics and I wonder…) and some will, with different symptoms. I think the statement above can easily explain why some do and others don’t, and why symptoms varies.
So about diet and exercise: I had 70-80% of my symptoms gone in the first 4 days of the carnivore / ketogenic diet I’m doing. I’m not saying it will work for all, but 70-80% within 4 days cannot be coincidence. The same results have been obtained by others. I do weight lifting too.
In the last month alone. I had my body odors returning naturally, without supplements, after 3 years and 4 months during which I had them only if I took androgen herbs (and only after a year and a half of taking herbs). Coincidentally, For the first time since 5 years BEFORE I crashed, I can wash my face and brush my teeth without having my lips burning so strong I had to put Vaseline on, 24/7. Those two symptoms are fixed. My eyes stopped burning in the last 3 months and sex drive is getting higher.
My last remaining symptom was insomnia and I can now sleep comfortably in the morning, waking less and less often and falling asleep right after I wake up. This despite having reduced sleeping herbs.
I noticed my hair are starting to thin at the top of my head. I’m slowly balding which means 5ar is building up. This is also new. It must have happened in the last 6 months.
If I do a long weight lifting session, body odors will be stronger and insomnia will increase. I can measure the levels of androgen and my reaction to them. I’m not cured, but I’ve never been better and I’m on a continuously improving trajectory.
So it can be time. After all I crashed 3 years and seven months ago. But I studied and applied tricks from one of the leading expert on epigenetic repairs and longevity and not only I got these results, but I asked my girl friend’s doctor how old she though I was and she said 37. Doctor’s opinion, 37 yo.
I’m 54. I have visa pictures I need to take every year and I visibly look younger from year to year in the last 3 years.
Last point, I have freckles from a bad sunburn 32 years ago. Dermatologist said it was incurable, literature says it epigenetic, and freckles are now 80% gone. I’m looking forward to have them gone entirely. This is an indication of epigenetic repair to my skin. It’s no indication of epigenetic repairs to my AR, but IMHO, when the tide rise, all boats rise with it. (well, to be realistic, I’d say most boats rise with it but there’s no evidence that what I’m doing goes beyond repairing my skin cell’s epigenome. The fact I’m getting better may be a coincidence and due to time alone)
Now, here’s where I’m going to take some flak. Traumatic relationships and childhood memories have been shown, if my understanding is correct, to cause epigenetic changes. It’s part of our environment. In all those years, I have asked myself what traumas could have contributed and worked on these as well. I did some mental work as well as some physical work. Take that as you will, I have no proof of anything but it didn’t hurt me to fix some childhood and relationship traumas, I can tell you that.
Please consider compiling success stories and trying to see commonalities. Study epigenetic and try and see the relationship between what you learn and the success stories. We don’t have much to work with, but we don’t have nothing either.
So that’s my short version of what I think of this 
…(Anhedonia is gone btw. I can have fun !)
I have hope and I sure wish others will see hope for I truly believe there’s reasons to have hope.
In my opinion, it’s better to change something in our lives in the hope of seeing changes (without doing dangerous things), than to do nothing hoping changes will occur by themselves, although it may. (remember, 70-80% of symptoms gone in the first 4 days of dieting… That’ not time alone)
Anyway. I wish the best to you all.
Ozeph.
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We’re all happy that you made a good recovery and that you’re doing well, but you’re not really helping anyone with your narrative. It’s called survivorship bias.
You seem to think of yourself as a do-gooder who bravely goes against a perceived “majority” that allegedly repeats some kind of imagined established doom and gloom mantra, by telling everyone that it can all be resolved by exercise and a healthy lifestyle, thereby defying the odds we ‘have set for ourselves’.
It is obvious that regular exercise and healthy food are generally good things to pursue for basically anyone. It is a little bit disrespectful towards other patients to outright assume they must not committing to those things to the best of their ability, simply because their experience of improvements isn’t the same as yours.
I could go on, but it’s about time people understood that pointing at a victim and telling them to stop being victims isn’t helpful. You can’t gaslight someone into a recovery no matter how heroic you think it is or how badly you would wish to be able to do so. Just be a little bit more respectful towards your fellow patients, stop making all kinds of awful assumptions about others just because your personal experience is different.
You’re not inspiring anyone by kicking down others.
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It’s good to be optimistic, but truth is, the last sentence could read “…Likelihood is. large portion committed suicide and finally escaped this Hell…”
We’ll never know.
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I can’t believe four people actually liked reading that (and there will be more I’m sure). Sometimes I have a hard time understanding this. Even when I had suicidal thoughts everyday I would not have liked reading that.
Is the glass half full or half empty ?
If epigenetic changes can also be caused by the environment as we perceive it (which an evolutionary psychologist could argue if he also knew the CDC definition of epigenetics) then half full would be better than half empty. But I guess that’s pushing it.
Meanwhile, half full is more pleasant to withhold than half empty.
You won’t see me disappear though. I’ll stay until some exterior forces beyond my control takes me out.
All the best to you guys !
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Basically you are just saying what everybody already knows, with some added negativity at the end. You’re closing statement is “nobody is coming to save you and you cannot directly save yourself.” You’re telling us to think realistically, which is quite a vague statement, but I guess what that really sounds like is just sit around and deteriorate until you die. Nobody with rational mind would actually consider that to be productive, and it certainly will not make the future brighter. How did the people who recovered get better? Their doctor did not cure them. So what did they do? Experiment on themselves, try every combination of substances and lifestyle changes until they see any amount of improvement. That is the only chance we have at getting better, is to take matters into our own hands. You are saying we have no scientific skills, and we can’t solve this complex problem of chemistry and biology. We don’t need to do equations. We just need to use trial and error and have unrelenting determination. Willingness to experiment with our own health. Many are willing to risk getting worse if they still have a chance to get better. If you don’t agree with that sentiment, fine. But don’t go around trying to convince people that they won’t be able to figure out their own situation just because you haven’t.
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Guys let’s not discourage people from posting recovery stories too much (unintentionally). We can use them to keep hope.
To me it doesn’t seem like eskimojoe’s intentions are bad. He’s not criticising anyone, his message just comes across boldly to people who are in bad place and unable to exercise and keep going at the moment.
I strongly agree conveying the message of staying positive and attempting to at least keep some form of exercise and life structure going is important. For the people in whom (partial) recovery is a possibility, I believe this will indeed speed up the process.
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you are asking me to take 2 major risks at the same time by assuming stuff i have zero idea about:
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assuming most of the disappeared accounts recovered when we know for a fact that many who disappeared are just dealing with the cards they were dealt with since we have communication with them irl
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assuming that things will get better if we just sit around and do nothing in terms of mobilizing as a group and achieving a goal together
Sorry but i dont have 10 years to allocate in the “hope and believe things will get better”, especially since im still relatively young and don’t want to waste another decade here since i haven’t gotten better at all regarding my PFS symptoms
You are also shaming people to get scientific clarity on what’s going on with us.
There are/were multiple communities dedicated for this disease that rely on homebrew protocols and even worse, charlatans posing as scientific medical professionals giving out advice to victims.
how many of them have produced something equivalent to baylor, which has been the biggest and most positive piece of advancement towards a “silver bullet” for us?
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No I’m not.
I’m imploring people to be realistic and to think about how we can break the cycle of failed self experimentation, delusion about what is possible by a very poorly funded foundation and further delusion about what laymen can do to contribute to cutting edge science with Google and not much else at their disposal.
I’m disappointed that you feel the only way to make progress is to continue to self experiment, in the way that people have for the past 15 years. As other people with long standing accounts have witnessed, the same failed experiments are recommended over and over, the same con men referenced.
We need change here, not more of the same failure.
In that sense, yours is the most negative reply you could have conjured up. My message is that we can shape our own future if we use our own inventiveness, think about how we can contribute to progress.
If I were trying to sabotage this community, I would suggest continuing on the same boneheaded path it’s been on for more than a decade. As long as we continue as we have done in the past, we are fucked.
As Albert Einstein is regularly quoted as saying (apparently with no evidence):
“The definition of insanity is doing the same thing over and over again and expecting different results”
I should of course mention that since this thread was created things ARE changing.
Note that we are fundraising to run a study that will deliver insight into the condition. Note that we now have podcasts, social media videos and have registered as a charity.
Each of those things does more to get to a treatment than another pointless round of a supplement that has failed every other time someone used it.
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If there’s one thing I’ve gotten out of this forum, is that I got the chance to meet this amazing human being @Greek
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You are contradicting yourself. Saying that no one is going to help us, yet relying on the rest of the world to save you. If we just wait long enough, and keep funding more useless studies, then all the scientists and doctors will come save us and we can all sing kumbaya. If you want to “think realistically” think about how long it will take before we can get an actual treatment for PFS. Does anyone here expect to get one next year? 2 years from now? 5 years? 10 years? This whole time, we’re fighting Merck, and our identity is some obscure disease that is not taken seriously, affecting only a tiny percentage of the population, which originated as a side effect from a prescription drug – and that’s what it is still identified as, a side effect. Is this going to be the next opiate epidemic? No. Do you think Big Pharma will create another drug for us and acknowledge the thousands of lives it has destroyed with its previous drug? Snowball’s chance in hell. Are we going to win any lawsuits against Merck? Good luck with that. Some of us are not going to waste our life waiting around. If you have tried a bunch of supplements and none of them have worked for you, then that’s unfortunate, but you can’t say objectively that these are “failed treatments.” For you, yes. For some people, they have worked. In your mind, every person that has tried to use supplements or other natural methods has failed, and everyone that had success is lying? Nonsense. You are arguing entirely out of emotion. It’s impossible for you to believe that people have actually recovered on here using their own protocols, and so therefore they are “con men”? That is illogical, and you have just resorted to attacking the character of many people who have suffered just like the rest of us.
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Oh, @KingHenryV, I think I’ve been as clear as I can make it at this time. There’s a point in online discussions where things are just not going to progress because neither party is going to budge. There’s not much point in me repeating myself, or you for that matter.
Ultimately, I cannot stop you experimenting on yourself. I think it could be extremely dangerous and has a poor record of success. I hope you don’t. If you do go for that plan - which as I said, I hope you don’t - then good luck.
Meanwhile, we will be pushing to get pfs recognised, research funded and treatment found.
I hope you eventually decide to come along with us.
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