Bizzbee is the perfect example of why I think supporting the foundation is so important.
After 16 years of homebrewing on this and other forums we have:
Lunatics like bizzbee, who are hyper aggressive and extremly frustrated, claiming they have a cure that is OBVIOUSLY not working for the vast majority of people. Yes excercise makes symptoms more tolerable and some people get better over time. But OBVIOUSLY there is not a real cure here yet.
So basically after 10 years of raging bizzbee and people like him, we have nothing substantial. Not even an explanation of PFS
After 16 years of the foundation and us supporting them, I am positive that we will have achieved more than in the past 16 years of homebrew. Dont let the maniac bizzbee discourage you from supporting the foundation.
The likelyhood that the foundation is successfull in finding effective treatments is MUCH! greater than you finding one in your parents basement armed with a limited budget and no relevant scientific background. Think about what bizzbee just wrote: Bizzbee wrote that pooling resources and studying PFS at top medical institutions with researches that have worked their whole life in this field is LESS! effective than you homebrewing in your parents basement.
THUS: Donate monthly to the foundation (minimum should be 10 dollars).
Take the best parts of âhomebrewâ. These parts are excercise, regular sleep and good diet. They arent a cure, but support your body in healing itself and make symptoms more tolerable. Realize, that for many PFS remains a problem despite excercise, diet and regular sleep.
Also realise that medications often have screwed people up even more and leave most with just a lighter wallet.
Know the history of homebrew: 16 years of failure to find a cure. In 16 years, if we all support the foundation, the minimum I think we cant expect is an explanation of what happened.
I dont think any reasonable person can disagree with the above.
Only bizzbee, because he is emotionally invested in homebrew curing him. He would hate to admit, that for many people despite the body making healing progress, some/ many symtpoms linger on (Mew, awor, vincenttv and bizzbee himself have this issue for example). He is terrified that he might have to wait another 10 years, for the foundation to find a treatment.
Lunatic! Ha! Dude I hardly even come on here anymore for advice, especially from prima donnas like you. I come here to be entertained once in a while and I knew you would eventually come out of that rat hole youâve been lurking in and deliver your fusillade of maniacal rants. You sound like you are having a mental breakdownâŚah yes, I remember what that was like when I had full blown PFS. A distant memory now. I have not had any serious crashes in almost a year now. My body temp is back to normal, my libido is pretty good for someone my age, and I can go three times a day. I would say Iâm about 80% recovered (thank god for discovering that homebrew). I want to fuck all the time. I havenât even worked out in 6 weeks and Iâm still feeling ok. Look at all the space this fool takes up to prove he was right and I was wrong. God you need to get laid, so much pent up frustration. Maybe instead of sucking up to the foundation you could drink some green juice, go to the gym faithfully, and maybe in a couple of years someone might want to suck your newly revived dick. But you are a PEEWEE arenât you PeeWeeDL? A PeeWee with a little peewee between his legs even before you had PFS.
People who have been cured do come back. Look up cdnuts and chi and others. They come back to contribute new or old things that they may have overlooked or forgot to mention about their recoveries. Stop putting words in peopleâs mouths. You look like a desperate fool. No one is saying that you should refrain from donating to a foundation dedicated to learning about this condition. Yet you continue to perpetuate this fabrication that so-called âhome brewersâ are antithetical to the foundationâs purpose, a completely absurd notion. I think the people on this forum are getting a little tired of your condemnations and sanctimonious sounding brouhaha. Now scurry off you little rat.
Spreading the notion that one shouldnt have confidence in the studies and that the foundation cant cure/ find a treatment for PFS is actively working against the foundation.
I didnt say that a healthly lifestyle is antithetical to the foundation. I said that homebrewers spreading the messages above, while simultaneously rilling up people to spend money on quack docs and dangerous medications, are. I have cited awor often, who states that the foundation isnt getting the support it needs, because most PFS suffers are desperatley spending money on the above.
Nobody believes your stories bizzbee. You have PFS since 2003 and your mental state (extreme agression, childish insults that sound like you are a teenager etc.) leads one to believe, that you are actually dealing with persistent symptoms that wont go away despite all of your routines. If you were actually bascially cured like you state, your posts would sound a lot different. More relaxed, trying to convince sceptics with a more understanding tone. Halft your post is basically content free and dedicated to calling me names. Do you really expect us to believe that a person suffering from PFS for 10 years, who has for about a year basically achieved a recovery, sounds like that? LOL. You really dont sound like someone at peace with himself and his situation. You sound desperate and irrational in your posts. Like you want to convince yourself that your method will cure you. You really arent trying to convince us, you are trying to convince yourself that you are basically cured.
The vast majority of cases have lingering symptoms years after discontinuation. That you ignore these cases while insinuating that they are just too lazy and thats why they havent recovered, is really self congratulatory and shameful nonsense. At least have the courage to state your nonsense clearly: Do you believe that the vast majority of PFS cases could already be basically cured, if they would only work out enough and diet strictly enough over a timefame of three years? Do you think that this is for all intends and purposes a cure?
If you recover is not only a matter of working out and a healthy diet but also LUCK AND TIME!
10USD more donated. every month iâm donating this amount as I canât donate much more for the moment. once i am fit to get a job you bet i will donate moreâŚ
all these false positivisms about getting better, iâm 80% now, iâm 23.3333% , im having 2 bad weeks then the good times come back ill be 64.3586% AGAIN⌠FUCK THAT. what we need is research done correctly to point out what is happening.
no one is saying extremely healthy living canât helpbut this wonât go to the root. i have extreme selective noise sensitivity , i can go live in the nature, but that wonât solve my selective noise sensitivity, and i wont be able to do the things i to doâŚdiminished quality of life. its only a workaround
i have been using exercise to feel better for years, if i skip it i get sicker again. i wasnt like this before. think exercise fixed me? no it hasnt
sad thing is even those guys who are saying research wonât held any results, they will benefit from the researchâŚ
This excerise equals cure for vast majority nonsense was started by cdnuts, a guy who had luck and a milder case of pfs. Tennager bizzbee can only rage on and on about excercise being a cure because the mechanisms for pfs arent yet understood. Nobody would go about and tell you that excercise is a cure for hiv for example. It makes the symptoms more tolerable, and for those lucky few who recover over time, it might speed up the process.
Again. Thanks for donating like me and my brother. I wish the thread starter would reconsider and also help out. Its only for his benefit after all. I would hate for the community to stand at the same point in 5-10 years because we were to lazy to set up a small monthly donationâŚ
i am also convincing close people to me to do the same. even if they donate 5USD, is good. i think i can raise around 30USD easily alone each month. end of the years thatâs 360usd, its something. and when i start working i expect to donate more
the only way out is research. thereâs many cases out there that arenât mild and cant work through healthy lifestyle. although i am following a very healthy lifestyle and palnning to take it to another level because hey, its the only way for now âŚ
ill give you an example of somehwere research helped: just saw at least 2 guys cured (yes cured) from hyperacusis because they found out the problem was in voltaged gate potassium ion channel 3. think anyone would have gottne there withouth research? they took an already approved drug,keppra, for 2-3 months and are cured. and one cured tinnitus as well.
for the love of god i canât understand how doing homebrew and supporting research are incompatible, if anything people should be happy to have a foundation and scientists looking into their problem.
Yes! YES! YES! I admit it PeeWee! It was all an elaborate scheme (twirling my mustache as I write this)! I lied about getting better in order to bash the foundation and once and for all send all PFSers to damnation. The jig is up! A paltry amount here or there is not going to solve this problem anytime soon. They havenât even come out with the results of these preliminary studies. It may take YEARS and YEARS for some actionable type of information. So yeah donate all your lifesavings if you think it will help and it may but this problem may be years or even decades away from some sort of remedy.
Xptriado, I had many ups and downs too during my regimen, now I have mostly good days. You are still in the early stages. When I started 3-4 years ago I was also in your shoes. I would reach as high as 60% and then crash to 25%. The reason I had PFS for all those years up until 4 years ago when I actually committed to an intense healing regime is because I was still using anti-androgens like Fluridil in order to stupidly and vainly try to keep some hair. And I had a terrible lifestyle, eating junk food, drinking, staying up late, not exercising; it all finally caught up with me a few years ago and I had had enough. Itâs all been explained here before almost ad nauseum what sort of tribulation to expect while following the natural regimen. Again, I havenât had a significant crash in at least 9 months. I am almost there! At least three spontaneous arousals today and thatâs just average for me nowadays. Sex is no problem. The only thing that remains is muscle definition and muscle growth characteristics and maybe improving sleep a little more to feel more refreshed. These loose ends may take up another year or so but I expected it would take years to recover given my horrid initial condition. I would like to return here and post a recovery within the year to give others some hope, however I think Iâm done playing games with sorry ass losers who donât like to admit when they are wrong. Anyone who wants to hit me up for advice is welcome, although if you ask a question that has already been answered on this forum about natural means towards recovery I will simply refer you to previous posts. My advice would be to forget about your vanity, go strict paleo with very low sugar to no sugar and absolutely no processed food under any circumstances, weight train intensely but only for short periods, no more than an hour a week initially and when you are well enough start doing sprints. Donât pop all these vitamins and minerals. Get them from juicing veggies. The t-boosters that helped me were horny goat weed and tongkat ali and resveratrol. The rest not really, it depends on the individual. I only took them to make the crashes more tolerable. You may not see results for months, as I sure didnât, but eventually it will come in short spurts and then longer spurts and longer, etc⌠Until a few years down the road you see your body hair growing back faster, your muscles getting denser, vascularity coming back, getting aroused by women is easy, more energy, more libido, oilier skin, no more pot belly, thinking is sharp, memory and recall are back, and sounds, smells, and sights of your surroundings are more vivid, etc, etc, etcâŚ
Bizbee ive been doing all this already fpr a long time thanks for the tip.
Like you when i found out about ppfs i extensively researched my - scarce - options in this forum. I found your name several time too. I prob even took advice from something you wrote.
Like i said, its a coping.mechanism for me. It hasnt cured me so i decided this is bigger than me and i am.donating. even if its years away i dont care - i personally think its closer but it doesnt matter.
I want research to happen not jist for me but for everyone else. If it never happens more people will fall sick. Plus depending on the mechanism they may or not take propecia from the market and this mechanism may or not be part of future or present drug induced damages, as propecia isnt the only one to damage people. I probably have a different perspective on this than many people here as i live daily with scientists and im an engineer my self.
To fix something you need to know the cause. Thats how any science advances and works.
To be realistic, the chances of us getting completely cured is extremely slim. Normally it takes many decades to find the cause and a cure for any given obscure disease, and sometimes it doesnât happen at all. Once the current studies are published, the FDA will have to either ban finasteride for hair loss or put more serious warnings for those planning on using it. When that happens, virtually no doctor will prescribe it, nobody will use it. Those of us who sued Merck would probably get paid some money, but there are hundreds of thousands more people who wonât be getting anything at all. If weâre very lucky, a therapy may somehow be found, if a drug that could heal us already exists, otherwise it would take decades and billions of dollars for one to be developed, if ever. So, us PFS men will slowly be history, just like: en.wikipedia.org/wiki/Radium_Girls
The developers and marketers of finasteride must be very happy with how their drug turned out, just think about all the money it made for the health industry. Most of us PFSâers bought and tried all kinds of drugs and supplements, paid a lot of money to doctors and diagnoses, and for research of course. Merck may lose a little bit of money, but itâs nothing compared to the money theyâd made, and they probably knew and calculated their gains and losses beforehand anyway, as any company working in a billion dollar industry would do. So finasteride has been a great success from an economical perspective.
I guess most of us wonât like these facts at all, but unfortunately this is how capitalism, western society, and modern civilization works.
Iâm with you vanquish. The chance to find a cure is very small.
BUT, with the newest developments in the medicine such as CRISPR/Cas 9, C2c2, nanomedicine, AI ⌠there is a realistic chance to get an treatment, IF we know the underlying biologic mechanism. And this can only be researched by the Foundation with donation!
Iâve donated 50USD yesterday, like every month.
Actually you do not know AT ALL if the chances are slim BECAUSE no one knows the root cause.
Seeing as noone knows it, saying chances are slim is will indeed make chances slimmer because you will not be supporting anyone to donate and find the root cause of this issue.
Once the root cause is found then if no drugs are approved and if the mechanism is unknown then you can say it will take decades. But no chances arenât slim at all, since the technology is nowadays much much more advanced than it ever was when they started researching things like CFS, MS, etc⌠and we are in a better situation as there have been recovered people, spontaneously, actively and some temporarily. so it really canât be all that impossible to find the mechanism behind this can it? does this seem that slim of a chance??
Radium girls is an issue from 1917, we are 100 years ahead of that.
It doesnât matter how many years we are ahead, we got brain damage + chemical castration + life completely ruined because of a pill that everyone, doctors, fda etc. said was safe, all for a little bit of hair. Does that feel very advanced to you? And even when the cause is discovered, you wonât be suddenly magically cured, it could take decades till there is a cure, if ever. Besides, there will pretty much always be new people getting diseases like aids, ms, etc. Once finasteride is off the market or is known by everyone to cause PFS, nobody will use it, so there will be nobody new with PFS anymore. That is how we are similar to radium girls, do you see anybody rubbing radium on their bodies nowadays? Same thing with fin, there wonât be anybody left using it in a few years.
Iâm not saying you should give up and stop trying things, donating, etc., everyone definitely should keep doing those. The alternative is probably worse and little hope is better than no hope at all. All Iâm saying is this is how the world works and that the situation really doesnât look very bright.
It is exagerated to say you are chemically castrated, brain damaged. You arent, its some imbalance. I guess you didnt experience any temporary recovery or youd know this.
We got fucked from fin because of corruption not technology. All the studies were flawed. Its not about advancement its about mankind.
As long as there will be people funding research on fin there will be advancements in this field, doesnt matter if the drug is taken out of the market or not.
If the alternative is much worse than donating in hopes for a cure, then why come here implying that its pointless to donate because chances are slim??
Dont you understand that withouth research we wil be in a much worse situation?? Do you prefer coming to this site in 10 years and read people talking about the same things over and over again or do you prefer to have a clearer picture of what is happening, maybe who knows even have a treatmrnt or a cure?? Because none of that will miraculasly happen withouth donations into research.
Ever since fin was developed youve got the human genome mapped and now you got gene editing knocking on the door with crispr. Lots of things changed and still are changing regarding understing of epigenome.
All you guys are doing with this kind of speech is bring hopelessness and diverting all the funds (even 10usd) from research into homebrew BULLSHIT or to some doctor. How much money have you put into treatments and doctors vanquish? To no availâŚ
Ffs we are talking about 10USD a month. Thats how much an illegal car parker makes in 30minutes in my city, to waste on heroin at night. How much money have you guys put into homebrew doctors and etc? How much more until people realize that we need this research to happen ???
Youre all looking for the finishing line, but you need to keep your head up and keep running it should eventually show upâŚ
Well that is certainly an altruistic viewpoint. Donations are a good thing, no doubt about it. But I am relatively impatient and I would rather find an approach that may take a few years and that Iâm sure will have a good chance of working. And it has been working, phenomenally. You donât necessarily NEED to know the etiology or precise pathological mechanism for some diseases or maladies in order to find remedies to treat them. Effective herbal treatments have existed for millennia to treat a myriad of conditions. We donât yet fully understand many phenomena and yet we make use of what limited knowledge we do have to fix things and solve problems. So while theorizing and reading papers may yield some insights here or there, I think if youâre impatient like me you may find experimental approaches more desirable. My life is completely different than what it was. Iâm sorry it didnât work out for you and others. If I were in your shoes I would probably have to hedge my bets on the results of research. I suppose the regimen I followed is not for everyone, and I believe Iâve made this clear several times on this forum. But to determine whether or not it works requires extreme dedication and discipline and that is no doubt lacking amongst many who have vented frustration with it after only a few lousy months. I am so glad I didnât give up even though I had my doubts. Today, I ran up a small mountain in record time (yes I said âranâ up) and I felt great afterwards, plenty of energy. Only a few years ago, this would have left me exhausted and feeling âcrashyâ. I have to tell you that focusing on healing the gut really did push it into the 75-80% region from the 60% region of recovery only a year or two ago. I just need to find out how to capture the remaining 20% and I will be sure to post something on this forum, replete with all the details and observations over this 5 or so year period. Good luck!
If you look at serious life threatening diseases you will see a minority manage to get cured or survive while the rest die or continue to suffer. PFS is no different to these different types of cancer. A minority will or have recovered from PFS while the rest continue to live with the condition and itâs side effects. Why did 4% of people survive with stage 4 Pancreatic cancer, what did those patients do differently to the 96% that died? Did they do squats and sprints 4 times per week, eat asparagus or fast 2 weeks at time. Maybe they took a series of herbs in a bizarre order or confessed to a priest once per week. A minority of people quite often recover from serious conditions and there maybe no explanation as to why. Some are just able to respond to the treatment but it is a matter of nature, probability and luck. With PFS, certain parties claim to have been cured by various protocols and then we have a generalized thinking that these said protocols are the key to curing all with PFS. No the protcols have simply helped a minority, the same minority that seem to get cured across a range of serious medical conditions. There is a list of names that I read on here of people who got cured from PFS who had something similar with their protocols and it was like 10 names. Ok so thereâs currently 3944 people registered on this forum presumably sick with PFS. If you do the maths 10 into that 3944 isnât even 1%, itâs a decimal number at best. Yet how many here have jumped on these protocols thinking they would get cured when the odds were massively stacked against them. You know the protocols by now so I wonât bothering name them. But is it any wonder that we still havenât found a cure with this type of thinking?
I also question the guys who come on here complaining that they are sick with PFS yet can still get to the gym 4-5 times per week, but their life is so bad because they can no longer bench press the same amount prior to PFS. Then when these guys get better suddenly they hold the key to being cured are bouncing around the forum like a March Hare. Seriously if you are still well enough to hit the gym all week how can you claim to be seriously ill? If I could get to the gym 4-5 times per week but had difficulty getting erections with my girlfriend I sure wouldnât come here crying like my world had ended. Itâs that same obsessive behavior that led these men to take finasteride in the first place.
How many here would like some closure to PFS? How many would like to know exactly whatâs happened to our bodies and know once and for all? I donât want to die in ignorance do you? Iâve no doubt PFS reduces life expectancy for the worst affected cases here. PFS is a degenerative condition like old age, thatâs not something that helps you to live longer. There are enough major studies out there that link declining testosterone levels to reduced life expectancy and other serious health conditions.
What age group does your testosterone level belong to? As I mentioned earlier, declining testosterone is a degenerative condition, and those who have this will age quicker regardless of how many pills and supplements they take. Testosterone is a major player in good health and longevity.
For the worst affected by PFS I would think they would want to know whatâs wrong with them. We need to know what PFS is for the sake of our futures and to make proper planning. The Foundation will for certain find out what PFS is and what itâs done to our bodies. I wonder how many will take stock or comfort from this information when itâs announced yet havenât donated a single dollar to the cause. Iâd be fucking ashamed if I were amongst that group.
Understanding is the first step to finding a cure. Who would have thought that a medical Dr would lose his son to a prescription drug and then set up a Foundation in honor of his sonâs life? We will find out the mechanisms behind PFS because there can be no greater motivation for answers than loosing your son. One day we will have our cure, the only thing thatâs stopping us from finding out today is money. When AIDs came out it shook the Western world, it was heavily reported in the media and was talked about like some doomsday condition. Today AIDs is often reported with words like treatment and potential cure and people no longer have to live in fear of the condition. So for people to come on here and say the Foundation will not find a cure for PFS is unfounded bullshit and scaremongering at best. You have to question the motives behind suck talk and wonder what their agenda is. Peddlers of misery can be found in all areas of life and sadly they always manage to drag a few people down with them. When these people get to close to my car they always see my bumper sticker that says fuck you and keep moving.
No I dont think it is an elaborate scheme on your part. I just think that you are overhyping the potential of excercise and diet. You and cdnuts are a small minority of PFS sufferers that recover in a significant way. What you dont appreciate is that this is a serious disease that will only be solved through research.
The post above is basically a good example of what I dont like about your posts: You overhype the potential of homebrew while downplaying the potential of the foundation to make significant progress. Yes it will take years (how many we dont know), but your method wont work at all for the great majority of PFS suffers. It will only make some of the symptoms more tolerable. I support this ânatural homebrewâ (excercise, diet and regular sleep) method as well because I believe it is a reasonable band aid for many. [b]But I want more than just a band aid.
[/b]I would totally accept all your posts if you would remind people that the real solution for everyone will only be found via the foundation.
Also I am not advocating to donate half of your income. I am advocating for everybody to set up a reasonable monthly donation (minimum 10 dollars per month). Every PFS sufferer should donate monthly, just like someone who might be subscribed to another service will pay monthly.
I really cant understand these posts. They seem counter productive and self destructive. You admit that the foundation is the only hope for the great majority of sufferers (regarding PFS being treated successfully) but at the same time write a post that will result in less people donating.
You make many stupid and counter productive assumptions. Why not not assume, shut up and donate instead? Let the miracle of science and progress do its work.
1) Assumption 1: PFS is an isolated uninteresting/ obscure mechanism: How do you know? Maybe PFS is related with many different sexual, mental and physical syndroms? Maybe PFS has pinpointed a major lack of understanding in crucial body mechanisms. Maybe if we understand PFS we can solve lots of related syndroms and diseases (that also have symptoms like anxiety, low sex drive, constant fatique, and concentration issues).
Again your comparison to the radium girls or problems like tinnitus makes a massive assumption. Since PFS is so central and impairs so many bodily functions, maybe the better assumption is that it is HIGHLY RELEVANT FOR MANY DISEASES!
2) Assumption 2: PFS= brain damage. Again you dont know and it is the worst possible of all explanations. Funnily enough a researcher recently wrote that he thinks that there is a good chance of finding an effective treatment for PFS (he believes it is a resistance not brain damage). Again highly negative bias is resulting in self destructive behaviour. This assumption contradicts your claim that researchers probably wont find an explanation. If researchers wont know, why do you know its brain damage?
3) Assumption 3: It is highly unlikely we will find a treatment or explain PFS. Again: How do you know this? You dont!! I repeat: A researcher thinks it is likely that a treatment can be found. Especially if it is related to major syndroms and issues, we might solve it much more quickly than previously thought.
All of these assumptions will directly result in lower donations and less study participation. Basically your posts is self destructive because your post directly results in the method you admit is the only possible solution for all sufferers receiving less support.
I think you are anxiety ridden, self destructive and you have started to love self pitty. You have stopped trying to work for goals and basically have surrendered. If you expect us to surrender as well, I can only say: Fuck you!
In conclusion: The tiny minority who have recovered completely have led this forum astray. This is a serious condition, start acting like it by donating. If anything, your bias should be to overhype the foundation (which I am not doing btw), as it is the only solution that has the chance to work for everyone.
