Let’s get moving.
Or, to make it simple… Do you think we will ever in detail know, what is wrong with us, what happened to us? Do you think, our condition will ever get acknowledged by worldwide medical society?
I am fairly confident that we can figure out what is going wrong with us and that awareness as well as acceptance of this condition will increase the more we find out. It is already happening. Ten years ago there was nothing on PFS. Since then there have been dozens of studies and literature reviews, there have been amendments to the labeling of Finasteride, there have been countless newspaper articles on PFS patients and increasingly doctors as well as the general public are becoming aware of this condition. Progress is being made.
Obviously, all that is far from enough and everything is happening way too slow. Unfortunately, we are in a situation, where little awareness and acceptance yield little resources, and little resources do little to raise awareness and acceptance. That’s a vicious cycle we need to break free from and that is not easy, but we have to and will try.
The good thing is, science is constantly progressing and sometimes rapidly so. CRISPR did not even exist 10 years ago and is rapidly changing and impacting research, diagnostics and therapeutics. We think that we have a fairly interesting condition with relevance far beyond the Finasteride-affected population. Once we have convinced a critical mass of people (particularly scientists) that this is the case, we are hopeful that the ball will be rolling much quicker.
Currently, we are pushing a massive rock up a steep mountain. It’s tough, slow and grueling. But once we push that rock over the hill, it will roll down on its own (and hopefully not been caught up in trees).
It’s impossible to give a time frame for all this and quite useless to discuss potential time frames, because obviously we are dealing with the unknown. We have to deal with this one step at a time, but with every step we will unravel a bit more of this mystery and in time we will have a better understanding of this condition and hopefully some ways to treat/cure this. The important thing is that we all do our part. We cannot rely on other people, we are a small community and we all need to chip in.
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I’m not replying directly to you here, NS, just trying to offer a thought.
I think a reasonable way to think about the time frame is that if we say that a treatment is the final stage, then we can think of the steps leading to that. So, every little thing that gets us closer to the research brings that treatment forwards. Alternatively, doing nothing means the treatment does not get any closer. As I’ve written about many times, one of the problems we have is that people often think that multimillion €$£ research is the first step.
Getting more awareness, getting more acceptance gets us closer to that research. Anything an individual can do to that end is a big help, far bigger than researching herbs, scientists or tweeting billionaires.
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No
What will hopefully happen is that these drugs are taken off the market to save future people from suffering the same fate as us. I truly believe these drugs will be considered barbaric in the future. But we are the statistics we will never see a cure. lets hope our suffering will not be in vain
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Sorry but im far past the point of optimism with this. I truly believe there is no cure. Life for us will forver be a blanacing act of trying to manage symptoms but there is nothing that can reverse the damage done. If however i am wrong and a cure is developed it will certainly not be in our lifetime. The research on how accutane and propecia fuck you up to begin with isnt even there let alone a way to reverse it.
If you want to have hope then thats good. it kept me going for a long time. But the deeper ive sunk into this disease I just don’t have it anymore
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From the childhood we started to believe that the life is perfect. But unfortunately when something bad happen to us on the way of our life we are getting very frustrated. If you think deeply you can understand that every feeling is in our mind. The poor and famous multi millionaires also get suicide when they can’t handle the frustration. So we can see what’s important in life to live is reduce that frustration when they coccur. No frustration means happy and calm mind. How to achieve happy and calm mind is the process of ’ Accepting things as they are’. Accepting that life is not perfect because getting ill, aging, accidents happens, Accepting that we will die sooner or later then nothing is matter, Accepting that Buddha, Jesus and every other prophecy had to leave this world so nothing is permanent. Once you started to accept tragedies that happen to you, your mind and body will heal and come to a status that frustration replaced with happiness and calmness. Then you most of the time remain in the present rather than past or future. Then you will no longer desperate for a cure which is a harmful action. We MUST look for a cure, but desperation is harmful. that’s what I meant.
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If there is a cure to our own version of PFS we will find it on our own while being guided by the research and studies
The medical community will never cure us. Not enough vested interest
So it means for the severly effected, suicide is the smartest option?
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@anon74895881 that’s how it feels a lot of the time. But we can’t succumb and let those cunts at Merck have another victory. God is with us. Keep hope
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Out of my mind, i talked/ heard at least 30 people who got fully cured. But they experimented with themselves.
So, yes, it is not a damage as if a fire burning the building, it is more like a fog, masking the building from the eyes of the citizens on the street. (Epigenetic changes are reversible.)
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No
You could Run CDnuts protocol for two years and see how much it recovers you. It’s recovered people completely and helped others . It’s just a suggestion. But don’t kill you self
Then you could do risker experiments if the natural/time CD type approach does not work or at least gets you to a high enough standard. If you are going down may as well go down fighting
Cdnuts’ “protocol” ends with him telling people it didn’t work because they didn’t believe hard enough. He even said himself that he didn’t have pfs.
Over the years that his plan has been available we would have a few more people saying it worked for them if it was effective. People get angry about negativity, but asking people to put all their hopes into a plan which doesn’t work and condemning them to suffering in silence waiting to find out if they’re going to be one of the lucky ones it works for is very cruel.
We ought to draw a line under recommending things which have no reliable record of helping and move on.
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I’m a severe case. I followed his protocol. It cured my insomnia to 80 percent pre PFS levels. His diet recommendations helped my severe constipation. Just so you know my constipation was so severe at one point the straining caused a l4/l5 disk bulge. It later became herniated causing severe sciatica in my right leg. I recently had back surgery to fix it. So when I say I’m a severe case I’m not over stating things. His protocol also corrected my shrinkage. It recovered my crashed LH, FSH, Total and free T and kept me off TRT. It never cured or really helped my sexual sides to a noticeable degree.
My point is that to say his protocol did not help me is a false statement. To say his protocol did not cure others completely is a false statement. But I will agree with you that those who recovered completely from his protocol were probable not severe cases. I also do not think he ever said he does not have PFS. I believe this to be a false statement. Feel free to prove me wrong and more importantly understand that everything I have stated here is from my own experience and relates specifically to my own imbalance.
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Man cdnuts was responding to everything he used to take, i don’t respond to anything. I don’t think he ever had that receptor related pfs.
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We know by now that PFS symptoms are similar across the bored even through they range in severity. We also know that most blanket statements about PFS are incorrect. I promise you that CDnuts had PFS. But spinning wheels over comparing you own case of PFS to his is not helpful. I wouldn’t get caught up in that side of things. If you think his protocol would help your own PFS case you should try it. If you don’t think it would help your own case then don’t try it.
What have you tried ?
What have you had done for labs ?
Any DHT, estradiol, allopregnenolone, 3a-diol or 3b-diol testing ?
I’m low estradiol, get worse when I inhibit estrogen, have low 3b-diol which is a potent estrogen receptor agonist, have high plasma DHT suggesting ample T-DHT conversion, have low saliva DHT suggesting that my endocrine system is binding most of my DHT with SHBG or some other mechanism that we are not familiar with before the DHT binds to the AR receptors. Saliva hormones are believed to show the amount of free hormones only. My Allopregnenolone is high normal in my urine.
I get worse from licorice extract which decreases conversion of active cortisol to inactive cortisone. I don’t get worse from increasing DHT but I don’t get better either. I temporarily recovered all of my sexual sides to 80 percent pre PFS level using mifepristone in 2017 only to fade back to regular baseline 5 weeks later. Mifepristone is an anti androgen and never made me worse.
I’m genuinely pleased that you have improved over time, this community could do with more people who have got better contributing and helping out. Thanks for being part of the group. Your symptoms sound terrible, I can relate to a lot of it, so believe me when I say I am sincere.
However, you can’t call me out and then immediately row back on what you’ve said by saying that this “protocol” is recommended wholeheartedly by you but it’s suitability is limited to your own specific imbalance. Either it works, or it doesn’t. You’re already saying “it might not work” and you’re one of the few who report a positive result.
The evidence is that years after these “protocols” were announced, a few people say that it helped. The vast majority do not say that. By now we’d have more success stories, a plan that would work frequently enough that we’d all know what to do. Some people spent a fortune on supplements and schemes. Desperate people. There are also many people who say they got better with time. How are we to know that some who got better with time didn’t have it happen in a period where they were coincidentally spending lots of money on a big bag of herbs and supplements from the Internet. You’re suggesting that 2 YEARS of this protocol is the right amount of time. Most people will see improvement between now and 2 years time by doing nothing at all, without emptying their bank account.
Try and be realistic about what you’re doing here, we believe that most people see improvement but are still vulnerable to further crashes or development of debilitating symptoms. People kill themselves. This is serious. Allowing snakeoil salesmen to thrive stops people from involving themselves in the serious work they could contribute to which will yield an actual understanding of this condition, help deliver a treatment and stop other people going through the hell that some people’s lives become after an adverse reaction to these drugs. The arguments against this are that it will take too long for the science and that it might be too difficult. This community would be a long way further forward to recognition if ten years ago people had acknowledged that spinach, sun lamps and essential oils were not reliable cures for anything.
As long as we as a community take the stance that the best thing to do is throw random pills and herbs down our throats instead of actually pushing towards recognition, research and treatment, the longer the agony is prolonged. We have over a decade of people trying homebrew treatments and no replicable successes.
I’m sorry if that seems strong and as I said, I respect your experience and thank you for contributing here, but inadvertently you are helping this community delay dealing with it’s problems. The longer we wait, the more time is wasted and more people die.
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Sorry but you are completely wrong about what I’m saying
The CDnuts protocol is a general approach designed to create the perfect environment inside your body for you to heal. It has cured several people. Actually for those that stick it out the percentage of overall recovery is pretty good. In fact, not many have seen his protocol through.
Secondly, I’m acknowledging that for some general approaches will not work which makes sense seeing that all the available evidence hints at PFS being very complex involving different imbalances and mechanisms in different people. I have been at this for ten years and I’m on several different websites. This website is just one source of information. Stop being so argumentative and treat these websites as resources to gather information.
IMO technology is developing so quickly - especially gene mapping and modulation - that it will enable future studies to get there what went wrong. As a result targeted treatment (even if not a cure) will be available for us.
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