JustQUitDut's story

Member Stories
#602

I started to notice positive changes after the first year.

I did many experiments like most of us have under such dire circumstances, but I cannot say if any of that contributed to the positive changes. What most likely did not help were things like Xanax, Alprazolam, and Phenibut, Anti-depressants. I tied every sleep aid you can imagine early on. I don’t think it helped much and potentially prolonged some PFS-like effects because these medications have PFS-like side effects. Still, I was driven by desperation and anxiety, as everyone here can appreciate.

People with longer-term symptoms will say I never had PFS, which is total bullshit. No medication for something this trivial should ever do this to anyone. When you’re in the early days of this, it’s easy to believe you are the worst one. How many times have you read that here? I felt the same way and was on the edge of ending my own life because of this. My only intention in posting here is to reach out to those on edge. It’s way too early to consider anything drastic. Give this a few years.

I do not forgive MERK. They can rot in hell. It’s hard to watch new commercials like HIMS and know what damage they will cause. So don’t think for one second that I am trying to downplay your suffering. People like me are among the few who can truly empathize with your situation.

6 Likes
#603

Yes, nobody here should minimize anyone else’s suffering. Long-term, short-term, mid-term it doesn’t matter. The cause is the same. I’ve had the same treatment from some other because of my posts. Telling me I never had PFS because I feel better after a couple years? I’m hesitant to post sometimes now as I feel like anytime I post something positive somewhere I have someone jump on me and make it seem like my posts are bad for the community. Like I’m distracting from the “real” problem, which only applies to long-term sufferers.

Maybe that’s why some people don’t post here anymore? I’m recovered now, and am trying to stick around as much as possible but I can see now why people do move on.

It’s not a competition is suffering. If I post something positive I’m not trying to detract from anyone else who’s still in a bad position here. I recognize that I’m lottery level lucky to recover from this shitshow and spontaneous recovery, or even improvement, is not a reality for the majority.

I’m also not selling any cure, I’m not making any claims other that what worked for me ONLY directly. However, when I was at my worst I would spend days on end delving into the forums trying to find any hope or positivity I could. There were a few posts that got me through and thank goodness they did. I could’ve ended my life well before my time with recovery around the corner. That’s what my posts are about. That and simply documenting my story and what I’m going through. I don’t want to convince anyone that they’re going to recover with 100% certainty “if you do this one trick!”, or convince people that they shouldn’t support the research. I just want to let people know that I recovered, and there is hope that they might too because on the off chance that they’re lucky enough to recover, my post might be the one thing that gets them through.

7 Likes
#604

Yes, there is something truly abhorrent about coming here after claiming to have recovered to express the sentiment that it is pointless to work on research and awareness. Basically communicating that long term sufferers such as @LazarusRy and the severely impacted should be given a PFS death sentence because in their minds they have determined that it is hopeless treating this condition… based on nothing other than conjecture. So let’s all just not do anything and pray we’re one of the lucky ones to recover and not bother trying to actually treat this for those who aren’t so lucky? Nice.

1 Like
#605

Narrow minded idiots. Enter into the decimation and destruction of my world which is blatantly visible no one can discount the extent and seriousness of the damage. From a muscley guy to the look of a refugee camp survivor/aids victim. I have fought this as hard as anyone out there. Come with me on the two plus decade journey and see what ive been through seeing my life break apart before my eyes. Most (not all) only had the arm of pfs around the shoulder for a while and then got better with time, not because they were super strong or because they were better than those who are stuck in this. The only way out of this for those who do not get better is research and treatment .For the ignorant with short term memories and who sit on high ground you need to be grateful beyond words and pray that you dont end up havjng a relapse like some. I generally try to be positive on here but i am seriously pissed off. This is supposed to be a place of collective brotherly support. Thankfully most sufferers whether present or past are generally good people. Think of the likes of Mark Turner and the many others who are no longer with us before making such derogatory statements.

7 Likes
#606

As the previous speakers @Erik and @LazarusRy have pointed out, following narcissistic and totally incohered

" I’m the genius maximus, who can fix it and all the others are to poor or to stupid"

pfs “hormone replacement quick fix” stories prohibited every action to find a real cure, a serious treatment, awareness campaigns to warn other innocent lifes like mine or kick the drug from the market.

Screenshot_20230428_120311_Samsung Internet
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The wonder protocols master frame:

…am a very intelligent person and versed in all sciences…an I’m on HRT for a couple of years…Take finasteride for years…stopped Advodart this week…got a hair transplant …no problem with hair, but with skin…took advodart…I can say I’m 80% …I waiting and starting finasteride again and Adovodart once a week!!!

1 Like
#607

A day like any other in the PFS community, i.e. belittling people who have recovered or telling them that they did not have normal pfs (out of jealousy that you yourself did not recover) I don’t know what all this talk is about. How does the fact that someone has recovered affects research activities?

#608

It’s a incoherent story of someone who denies the existence of pfs "doesn’t believe that it is permanent " and than he restarts finasteride with pfs. And advodart once a week. As a severe patient I don’t accept that pfs is nothing as a temporary hormone imbalance and that someone talks about taking finasteride again.

As you know me very well, you know very good that I have a personal friendship to three recovery cases in the german chatgroup and that I’m in friendship with many other members from here, the pssd, Minoxidil and the Floxacin community. I support all initiatives and fundraising with donations and activities.

Never suspected a suicidal other member for abusing juveniles or being brainfucked. I never heard that you did one donation, positive activity for this community.

And I’m not jealously for any real “recovery” because I’m 61 and I have lived a good live, what I never ever let hang out here to feel better like some “recovery” poser, telling us how the have great sex now and feel super good. My life is over, I only fight to support the fighters, who do so much for us all.

2 Likes
#610

And let me say up front that I do not support his protocol containing aromatase inhibitors among other things, but I am happy for his recovery. In addition to photobiomodulation myself, I want to try trt with hcg as I have very low testosterone levels and may add hops to that. We’ll see. I have nothing to lose.

EDIT because i cant add new message:

I didn’t mean that Erik was traveling as a substitute, but rather that I was almost there and he had to fly from the other side of the world and pay a huge amount of money. Maybe the dictionary I sometimes use translated wrong. I would have loved to cover the costs but I was confined to bed for over a year at the time and was unable to because I was struggling to survive. I sent you screenshots to all the costs and so the amount increased because there was less and less time by which the cost of, for example, the flight increased and the accommodation in Hamburg itself was quite expensive.

No no in the PFS community we have spies and confidants haha (I know who) I don’t know where I questioned the purpose of this study since I signed up for it myself. What a common lie. Yes I said it later after the fact that I cut myself off because we had almost everything finalized and that I don’t want to sign up for future studies because of it. But I never said it wasn’t right, yes I even sometimes explained to some people what the research was about. Did I criticize PH and PFS NETWORK? Yes, and I had the right to do so when it was justified. So think before you write that someone is lying because that’s not why I signed up for this study to not take it seriously.

#611

That is absolutely not what happened with your participation in the study, at all. Erik was always scheduled in to travel to Hamburg - he’s a severe patient who was affected quickly, an ideal case - and he paid for his own expenses. Saying he replaced you is inaccurate.

You not participating had little to do with the expense involved - we’ve covered expenses for several other patients in Europe - and more to do with your attitude.

I had told you when you first applied that you would need to pay for your own expenses, then we would reimburse you. As the date of travel was approaching, I attempted to contact you with no reply, several times, before you did reply and said you had a family emergency. Eventually, you sent me a series of emails saying you had found accommodation and flights, and needed the money in advance. I agreed.

At the last minute, you told me the amount had increased. I honestly would have been fine with this, but then I had heard from several people that you were questioning the purpose of the study in other groups, saying you were going to “cut yourself off from PFS Network” because you didn’t see “any special initiative” on our part. This was while at the same time asking me for more money to travel.

It was clear to me at that point you were not serious about participating at all, which would have jeopardised the study had we not found a suitable replacement in the three weeks you left me. Luckily, we did.

I have no idea why you’ve decided to come here and lie today. I was nothing but polite to you throughout our emails, even after I found out you were practically insulting our efforts to others.

3 Likes
#612

Separately, this thread has been revived enough. Both sides - leave it alone. Your points have been made and are clear.

1 Like
#614
#615