oscar, i am sorry, but there is no chance that i am going to go through that whole long thread right now to find you references … aint happening bub. i think you should re read through it, and you will have a clearer overall understanding of what has been shared with us so far.
feel better.
Thanks for the explanation. I wish you the best of luck man… let us know how you’re faring with your protocol from time to time.
Cool story bro. I guess since you’ve managed to crack the code with exactly what’s going on with each and every one of us you wouldn’t mind sharing it right?
The truth is you have no idea… which makes your snide commentary all the more ridiculous.
I don’t think you need to know “exactly” what is going on with us to suppose with a high degree of certainty it isn’t caused by infection, inflamation, pathogens, leaky gut, etc. Do you think that the six or seven institutions currently investigating our condition are so incompetent they did not look at the entire presentation of PFS among the sixty or so people who participated in the last round of experiments and consider these things?
What I know for sure is that I’m suffering from some type of chronic illness that evades normal diagnosis and treatment (so far). Everything else is pure speculation. I think it’s fine if people are convinced that the answers lie in one direction or another. What I find absurd is the condescension and chest thumping from people who are completely in the dark. No one knows a damn thing about what’s going on here. Accordingly, it would be pretty awesome if folks were a little more humble rather than seeking to belittle others who are just as lost as they themselves are.
Amen! It’s absolutely humbling the more you study human physiology. Humbling and maddening! I have such little certitude in any idea I propose for brainstorming purposes. I express my experiences and my intuition, but I carefully qualify that they are such. Like most everyone on this site plagued by this wretched condition, I’m just a regular dude who was FORCED to research science and learn how to speak to doctors. But you hear some of these other regular dudes speak, and it’s like they won the nobel prize! I’m amazed at how sure others are at what they think is at play, so much so that they just completely close the door to others’ ideas. Sometimes I think they’d rather be right than cured. It’s more important that their pet idea be accepted, all evidence to the contrary is to be thrown out because they’re “smarter” and how dare someone cure themselves with some silly “alternative” cure when they’ve been reading so many pubmed abstracts.
Where does the certitude come from? One should be certain of absolutely NOTHING. No stone must be left unturned. Absolute hubris to think/behave differently.
Dr. Jacobs seems to understand the issue at a broad level.
And here we have Dr. Crisler talking about the problem, and discussing it further here: viewtopic.php?f=22&t=2551
[youtube]http://www.youtube.com/watch?v=BEGCTMtlgoc[/youtube]
Yes, there is a broad understanding of the problem – clinical hypogonadism, potential androgen resistance, neurosteroid deprivation symptoms etc – however the exact molecular reasons for their persistence is what needs to be researched and understood.
If they know so much how come ZERO of the recovery stories are from their patients?
Nobody said this was easy to treat or cure. A handful of anonymous internet postings which cannot be verified for authenticity, and seem to have non-repeatable methods, does not help lend credence to this fact.
But why do ZERO recovery stories involve seeing one of these docs?
Agreed man. Well said. The certitude lies in stark contrast to the persisting illness(es) we’re all contending with here. But what I find truly absurd is the bizarre need some people have to heap scorn and condescension on others. Are you sick? Then stfu and try to get better. Lecturing others online on why they’re idiots seems really sad.
Mew… I appreciate your position and the posts you’ve made (not to mention the resource you’ve created in this board). I personally see little value in becoming too invested in any of the prevailing theories (though I hope Drs. Jacobs, Crisler et al continue to investigate and promulgate their understanding of the issue). Myself, I’m mainly concerned with getting better. To that end I’m comfortable with exploring avenues that others may consider silly. C’est la vie.
Understand that I’m not condemning the thoughtful research being done by a select few… I simply don’t feel beholden to any of it just yet.
Outcomes > Theories
Thanks for that link, Luckfax, I never read Quint’s story before. That’s damn nice to hear.
This recovery (which I take at face value) fails by Mew’s standards: “Nobody said this was easy to treat or cure. A handful of anonymous internet postings which cannot be verified for authenticity, and seem to have non-repeatable methods, does not help lend credence to this fact.”
But I believe him and am as confused as ever on the broad range of what works for people.
And what do you think is the reason why people create theories and explore them? Because it is fun? Theories are are a means to an end for them. It’s highly unlikely that you will get an sufficient outcome by randomly trying stuff. People have tried all kinds of meds and supplements on here without any sufficient, lasting and repeatable results. We will have to create, explore and test theories to narrow down the treatment options.
On the other hand, if you cannot contribute to theories testing stuff and reporting their effects is better than nothing.
Perhaps I wasn’t clear. I have absolutely no problem with efforts to weave PFS theories out of the existing data. That’s obviously pretty crucial. What I’m saying is that;
a) I’m not particularly invested in any of them at this point, nor do I see the value in becoming too attached to any of the prevailing theories offered given the unclear/poor outcomes.
b) I’m willing to try many different things, whether people think it’s silly or not, because I’m committed to a positive outcome for myself.
c) Condescension and derision of others makes no sense whatsoever when you’re also sick (not that it ever makes sense… but it’s so much more baffling when the person hurling insults is struggling with their own health as well.)
Take care,
No, the PFS docs have not had much success. But, both of you are suggesting that Shippen’s, Crisler’s or Jacob’s success rates attempting to treat known and documented consequences of androgen ablation puts then on equal footing with the pathogen/infection theories or the doctor in Greece, who made matters worse for many, is preposterous at best.
Komas, I’m not particularly surprised you would say “stfu and try to get better” considering the content of your other posts. But, considering that comment it’s amusing to get a lecture from you on condescension. Since you have absolutely zero clue what I’ve tried or what I’ve done over the last two years maybe you should stop posting before you embarrass yourself further.
Haha… you know what… never mind. I feel like I’m speaking a different language here. Carry on fellas.
What the…
Why did you think that post was directed at you? It was clearly directed at Oscar (who, incidentally, came into this guy’s thread and left a steaming turd of a post) and more generally at those who feel it’s appropriate to shit in people’s mouths when they hold a different opinion (a relatively common occurrence around here). It’s also kind of interesting that you have such a low opinion of me when I’ve never interacted with you at all. Haha… strange forum.
Well, there was no such implication, but since you went there…the many prestigious urologists I met with in America didn’t recognize prostatitis, so it took flying somewhere overseas to rid myself of my pain down there. Additionally, French and Canadian urologists, among others, appear to recognize prostatitis in PFS cases. Just because the doctors you’ve chosen to elevate and idolize don’t appreciate the significance of infection and are part of a medical establishment that comes up with wonderful euphemisms like “abacterial prostatitis” and “asymptomatic inflammatory prostatitis” and “chronic pelvic pain syndrome” when their tools don’t allow them to recognize what’s going on, doesn’t mean it ain’t so. I don’t fault endocrinologists or osteopaths for offering TRT and have nothing personal against any of these guys. I only have a gripe with doctors and people who think they know it all and are not humble enough to consider all possibilities. I mean, there was a time when doctors scoffed at washing their hands before delivering babies.
Some of you guys would be behaving JUST like those insulted know-it-all doctors the way to you carry yourselves here.
The full story of cadaver-contaminated births here: en.wikipedia.org/wiki/Ignaz_Semmelweis
Oh, I don’t “elevate” or “idolize” the docs. But, I don’t dismiss the ten year and hundreds of patient experience Shippen has in attempting to treat PFS. I’ve said time and time over no one is having any degree of success. But that by no means puts them in the catagory of quackery as someone treating PFS via rectal cleansings. What’s next? Chakra balancing? Ricci healing? Where do we draw the line? These things makes this community look foolish when every hair loss site and Merck shill is already working overtime to accomplish just that. We cannot afford not to be taken seriously.
Regardless of our differences of opinion I wish you both well and I hope research continues whichever direction it leads us in.
Boston332, I know you’re not intending to be mean spirited, but rectal cleansings? Really? I mean, where’s the intellectual integrity and curiosity? Tell me how mocking biofilms and calcifications treated by physical means is any different than the doctors who scoffed at washing their hands before delivering newborns? This is the unnecessary condescension and derision that Komas was referring to. What’s to be gained by this all or nothing approach? Why mock what you don’t fully understand? Why rule out anything? You’re so concerned with what the outside world thinks – they don’t care. The only thing that looks foolish is the infighting amongst impotent men. And this culture wouldn’t exist if people were allowed to express ideas without the rubber stamp editorial post whenever the party line wasn’t represented.