I’m Korean, so I turn the translator around. I hope you understand.
Pfs, 7 years of hell.
This shows no sign of recovery.
Has anyone recovered from this community?
Do you have time to fix it?
Does everything work out in a day and recover?
Or does it recover slowly and slowly?
I am waiting for my recovery without any effort.
I want to hear a hopeful story.
I want to have a clear, lively and pleasant day like before.
I’m Korean, so I turn the translator around. I hope you understand.
Thanks for passing this along @Cooper.
There seems to be people who have recovered although it’s hard to tell as they stop posting when they get better. Also it’s hard to tell if the disease does not just stay latent and shows up years after.
However, there are people that got better. Symptom free or almost symptom free. I’m one of them and I’m in contact with others. What I did that helped me the most is cut carbohydrates almost to zero: less than 10 gr a day. I’ve been eating lots of saturated fat, mostly ghee, and lots of meat. This gave me more energy so I could exercise.
In my opinion, doing nothing may make us better with time, may do nothing at all, and some people get worst with time. At the same time, if I was going to do something, it had to be safe and natural. This is why I went for diet and exercise.
I also tested amino acids, minerals and supplements and they seem to help.
We should deal with symptoms correctly.Just waiting is not always a good way.
As he said,you can try some diet and supplements that are less dangerous.
And I am japanese.I often converse a man from Korea in japanese forum.If interested,please watch it.
Hi @Mr.Children how many are the afflicted by pfs in Japan?
Even if I try, that’s when it gets worse.
This makes me even more tired.
So I give up and wait.
한국어 포럼 만들었습니다 제일 밑에 있어요
I’m not sure,but the number of those who have taken fin is more than a half million.So,maybe at least 10-50thousand.
Then why are you here?
Do you just hear there are some who recover by just waiting?
Time is not super power…
What supplements did you try? I might try to cut out carbohydrates
Again, some tried stuff which made them worse and kill themselves…Fair enough…
Yes fin made me sick but I am actually working, I can do things and yeah I am weaker than pre PFS… Libido and sexual things linger but I am way better than in June, and July when I crashed and could not leave my bed and avoided my friends in the streets of my hometown… I am by no means cured, but 4 months after some shitty symptoms have abated. First monthI was super careful about food but I am not disciplined enough to follow a diet at the moment. We have too little understanding of the disease to play mad scientists… Melcangi is quite clear about supplementing and it could be worse… I know people suffer and all but we are not the same in PFS… Some have it bad, some have it “bearable”. The best thing I have done so far is working on acceptance… I took a poison, it fucked me up but it did not kill me. And I went from zombie like to teaching classes on a daily basis, attending concerts, seeing friends again, playing music, writing songs, booking shows for my band…
The problem is if anyone is hinting at getting better, it might be suspicious or “Oh you dont have PFS”… Come on guys, we need support: the ones who are bad need support and when I read about a guy who is better, I feel happy for him and I hope it will last…
And trust me, June, July were the worst months of my life and my GF left in the thick of my crash… At least now I don’t wake up with wanting to kill me and I no longer google “suicide”, which, as far as I al concerned, is an improvement per se…
I agree with you and I back that up. I crashed in June 2018, went on a carnivore / ketogenic diet on the 16th of July and have started getting better from that point on. The 16th of July mark shows an undeniable contrast that leaves no doubts the diet is what gave me the most improvement until now. Most neurological symptoms went away within a week and those were the most debilitating to my life: I couldn’t work, take care of my family and I though of killing myself. The sexual symptom I didn’t care much about. I had enough sex and women in my life I could have none from this point on I would still die a happy man. But what do you know, 6-9 months into the diet sex came back.
At the end of November, I started an amino acid experiment, fully documented here: Amino Acid For neurological symptoms
When I cheat by not taking the supplements, life becomes more dull within 7-10 days.
The experiment was interesting, I still take quite a few of those supplement, but it’s still the diet that brings the most relief. As a proof, when I cheat on the diet I start getting more insomnia and brainfog (by not sleeping). I can see variations depending what I eat, carbs being the most disruptive.
At the same time, I found that once every 2-3 days, my body feels like I should have some carbs. A single cracker with some natural raspberry jam and macadamia butter does the job and I’m good for another 2-3 days.
Insomnia is my last significant symptoms although I have a plethora of residual symptoms that don’t bother me at all. Having less sex drive has its advantage: I stopped chasing girls like a dog turning circles and chasing its own tail. I had more than a hundred girl and there’s no way I would ever satisfy the sex drive I once had. It’s a never ending quest with no holy grail at the end. On second thought, having a sex drive of, say, sex once or twice a day, is a nice breeze compared to how I was in my thirties.
Having the type of insomnia I have also have its perks: I get to dream a lot in the last 3 hours of the night. I dream in full color and my dreams are so interesting, brings so much adventure, travels, sex and social life, I’m looking forward to dreaming when I go to sleep. My real life pales in comparison to my dreams.
It’s also in my dreams that I have seen the most beautiful scenery and the most grandiose cities. (I traveled to over 20 countries and did see wonderful scenery, cities and people in the real world)
I’m probably the only one here who’s seeing benefits about getting pfs. By doing this diet and adjusting how I do regular water fast, I most likely found a way to live healthy, fit and with a clear mind until I’m 90 or more (that’s what I think anyway. No way to prove that here and now!). People around me have told me I actually look increasingly younger as time pass. Almost 52, no grey hair, no wrinkles, thin and muscular with a six pack. That’s better than a years ago.
At this point, almost a year and a half after crashing, I can say living with the level of pfs I have is not too much trouble. Call me naive, but I think it will continue to improve and one day this thing will be gone.
I know some people improve for sure and you are part of these and I am truly glad for you mate :). My endo in France told me to leave it for at least 6 months, time your body readapts to the shambles fin created…
My main concerns for the future is how to tackle dating and girls. I am 43 and stil quite attractive ( last girls dated were 25 / 30 years old). Still I fear I will have to avoid intimacy in the future as ly libido and dick are not as reliable as they used to be… It also rebalances my life of sort… Before I was always obsessed with being in a relationship, no matter what, even if I was not fully happy… I think it will help me chose the next girl or woman in a more careful way and invest in other things that relationships… I am not fully convinced of living in the same house anyways and have no intention to have kids or so…
But thumbs up for your fight Ozeph. It is reassuring to see guys like you getting better no matter what…
Keep it up bro… Being “older” ( we were lucky enough not to be stuck with this at 25…) puts things in different perspective too, I don’t know if you agree with me on this :).
Je suis parfaitement d’accord, et pareille pour les femmes.
At this point, and for the first time in my life, having a girlfriend is not a priority. Sure it’s nice, but not having one frees so much time (and money) for taking care of myself and what I truly want to do, and who I want to be. It’s a blessing.
Plus having the power to say to any girl ‘‘this is how it works and if you don’t like it, you’re free to go. I’m not keeping you from leaving’’. This gives me so much freedom and really puts my priority straight.
I can live this life to the fullest by not having to chase girls all the time. And maybe it’s the age, but I’m tired of having shallow flirtatious discussions that brings nothing to my life. You see, with a high sex drive, not having sex takes 99% of your thoughts and if you have sex, it takes 1% of your time. But if you add all the time you have to spend with the girl to get it, it’s another story. For the records, I hate shopping with a woman. When I shop alone, I know exactly what I want, I go straight to it and I get the hell out in half an hour. With a woman, we linger along with no precise destination, we end up buying all kind of shit we didn’t plan for and it cost ME twice as much as it would if I was alone. Plus it takes hours.
But if you’re worried about bed activities, you can first try L-Arginine (or nitric acid helping mix that contains L-Arginine among other). Body builders use it to pump blood into their muscle. It does the same to the penis.
And some people have tried Viagra. For sex drive itself, there are amino acids that can help but considering your endocrinologist told you to take it easy for 6 months, I would advise those.
I tried Arginine before bed and I had a boner half of the night. Uncomfortable for sleeping…
Best of luck to you !
gaba glycine tyosin…
I can’t list them all. I’ve eaten everything I’m going to cut down on carbohydrates from now on, too. Do I have to cut down on carbohydrates for the rest of my life?
I think I’ll be alive if the Brainfog is gone.
Sexual side effects don’t matter to me at the moment.
Do you try taurine?
It seems to me really good.
I ate taurine too, but it wasn’t good.
The fasting has a short effect.
The post is asking if is there anyone recovered, so yeah, of course there is. I write this overall to give hope to all there that is noticing some good changes…
You can see my activity and see all my posts. I had a really bad crash on april 2015. So bad, with a lot of sides, the sexual the most heavy ones. And mates, I fucking got recovered, 100% of aaaaall them. The good thing is that from anixety, brainfog, weakness and all this I recovered myself quite fast… maybe 5 months… but the sexual sides lasted until more or less june of 2016. Anyway, from the begginings of 2016 I could have erections, and I was fuckinh happy becasue I was beating pfs and was having the best time of my life…
All improved and improved, and guys, I was oficially 100% recovered I’d say un may or june of 2016.
So yes, people can get recovered. My case though, is a bit strange I guess. I stayed fucking amazing until the summer of 2018. In summer of 2017 I had a small period of side… but I got better and it wasnt even a crash.
Summer of 2018 was actually a fuckin crash again, you can see my post “getting so much worse after bein 100% recovered”. I swear guys I was so good, and again had a crash, but it just lasted 2 months (july and august) and suddenly I recovered again. It was sexual and energy, and also brainfog as well.
The thing guys is that I’ve been good again until this fuckin summer…Again feeling more tired every day… till finally the sexual sides came and the fucking brainfog again. This time though, im not getting better…I don’t know any other history like mine, getting 100% recovered and then getting worse again…
Now I can have sex, libido is so low though, but the worst thing for me is the brainfog. It seems that i’m in a paralel world, I can’t enjoy any fucking thing, it’s hard to focus in the things i’m doing or i’m seeing… And i’m fucking crying everyday thinking in how is possible i’m like this again when I overcame this already…also not one but two times… God…
I’m thinking in take a pills called Dogmatil, (sulprida)… for dopamine… I took them in 2015 with the first crash because I couldn’t control my anxiety and I was crying all day… I know it helped me… Would you guys take them? I’m quite lost now… But I wanna let you know with this message that recovery is possible, you can read all my posts…
How many doses?less than 3000mg?
Then I recommend keto diet to you.