The problem is, various medical professionals and PhD scientists have already alluded to where the issues may lie – tissues, nerves, neurons, erections etc mediated by DHT, neurosteroids and androgen receptors. Those scientists are far more qualified than any of us to be making such statements, and I fully trust their opinions. You can read these statements by Traish, Irwig, Goldstein etc on the homepage of Propeciahelp.com – propeciahelp.com/
Now, I can understand such statements are depressing. If you don’t believe them, that’s your perogative but it doesn’t change the truth about what they’ve stated… and what they’ve stated has NOTHING to do with “candida”, “toxins” “leaky gut”, “parasites” or any other such things. Nor has Finasteride use ever been connected to such in any research study in 20+ years.
The more you guys try and push such alternative concepts, the more this forum will not be taken seriously by the very people we need to help us – the scientific and research community. That is my opinion, you’re entitled to yours, and I stand by it because getting scientific help and research is one of the primary goals of this site.
Leaky gut and overgrowth of pathogens because of dysbiosis and immune/endocrine distrubances is no more alternative than the path you have chosen to focus on over 20 years, and which hasnt led to any satisfying way to only manage this disease. None of these doctors you are quoting have really helped anybody while staying on the same unproven path you’re determined to stay on, excluding every other ones. None of the hints we have so far about the AR theory fullfill the criterias to attain the status of true scientific PROOFS and you should know it. So why refuse to explore another path that just hasnt been explored yet by doctors and scientists. Try talking to open minded doctors about this theory (iPFS lol) and they will admit its plausibility. Its no more “alternative” than your epigenetic theory you’re narrowly obsessed with. Mainstream narrow minded doctors will actually think both theories are crazy speculations and that PFS doesnt even exist.
Dont get confused, 99% of the talk about “candida” on the interwebz is indeed “utter and complete”quackery. It shouldnt let you think that a theory that can admit the possible involvement of this pathogenic agent in our conditions is to be crossed off as unscientific. This is faulted reasoning.
If anyone wants to go down the “alternative” path, to each his own. We’ve seen the damage done by sufferers blindly believing in “breakthrough treatments” in the prostatis/kos thread. That thread probably sent this community back two years. Aside from the wasting precious resources on a criminal, many men are suffering from additional symptoms from this “treatment.” Now they have this group to join: fqvictims.org/fqvictims/index.htm
Like I said, each fin victim has his own path to follow.
Second, you don’t know what you’re talking about. There actually isnt anything “breakthrough” or “alternative” in how the Kos doc tackles prostatitis. The fact is I had (still have) prostatitis, which is (literally) a pain in the ass, and which symptoms are pretty much the same as PFS for many. Urologists anywhere would have given me the same kind of antibiotic treatment. Thing is Dr G is one of the only doc in the world to do this with daily prostatic massages, which i dont have the time to educate you about why they are very desirable while under antibiotherapy for prostatitis. It still is to date the best way to treat bacterial prostatitis. The problem are 1) that this asshole told me to keep taking abx when I was reacting to them (any doc in france would have had me stop quinolones at the very begining of the adverse reaction 2). That we didnt know if bacteria were actually involved in my case. (urologists everywhere still prescribe abx even in the absebce of positive cultures frol prostatitic fluid anyway). Thing is chronic prostatitis is still a mystery to science and medicine, very much like PFS. And nothing has been truely learned about it for 35 years, because of the narrow-mindedness of doctors. Read this brilliant paper to understand pelvicpainhelp.com/
So please stop talking about “alternative” without bases and read my post above, which answers why, along with what I just wrote, you really are just talking out of your ass. Your reasoning is really way more alternative than mine. And especially, please stop using the “Kos failure lulz” to fuel your faulted arguments. Most Fluoroquinolones adverse effects sufferers are victims of very mainstream doctors that prescribe them routinely for prostatitis without proofs of infections, and other UTIs. Beleive me on this one, I know many of them.
No, targeting known mechanisms of action of the drug, and investigating treatments tailored to such, would seem to be a more logical approach vs. just blindly trying things left and right even if they may have no connection to Finasteride.
The research about what Finasteride does is already out there, and it’s a resource everyone on this forum should review as a logical starting point from which to investigate further.
for sure this is the best rational approach and i agree to stay objective
but how about drugs for treat the condition ? no one since now is effective
and how about discriminate real pfs affected and possible “other disease” affected?
(probably we r not all suffering the same cond)
since these crucial answers are not known, it’s normal that people strive to attempt a recovery, in every way is possible, because at the end, nobody accepts a untreatable condition.
as far as i saw here, there r periodical theories that gets follower since they r proven wrong
i think that when the identifier of pfs is advertised, lot of people will get probably more confused …
Why am I mentioning this? Because it took a long time for the paradigm to shift. These doctors were ridiculed for thinking that a bacterium was responsible for ulcers. Mocked and scorned for their “alternative” theory. But later were awarded the Nobel Prize in 2005. And Antibiotics are now routinely prescribed to treat ulcers.
So I don’t care if so-called “PFS experts” laugh at “alternative” theories. There really isn’t one theory that carries more weight than any other, there’s no one theory that is any more legitimate or proven, and therefore it’s insincere to condescendingly label any one theory “alternative”. All of our ideas are just guesses, just speculation. Furthermore, the PFS docs have not healed anyone and have no more credibility than one who HAS healed himself. The PFS docs, in prescribing hormones and performing surgeries and procedures that have not reversed PFS are doing exactly what we are doing: experimenting.
It’s sad that clinging to one’s THEORY is more important than congratulating and celebrating the recovery of one of our fellow brothers. It’s sad that some people find IHP’s recovery inconvenient because it shatters their assumptions. A good scientist is always trying to prove his theory is wrong, is always looking to find the exception which could make it fall apart.
If IHP’s recovery contradicts your existing theory, then perhaps your theory has holes and deserves reconsideration. Instead, many of you look to discredit IHP’s reputation, like a dirty lawyer trying to sully the reputation of a witness.
Also, sorry to burst your bubble, but PFS doctors do not pour over every single post on this forum. They just don’t. In fact, they ignore 99% of it. And they could give two shits about some theory if it doesn’t jive with their existing viewpoint. This does nothing to diminish the sheer volume of patients who show up at doctors offices around the world complaining of persistent side effects after finasteride usage. If a doctor doesn’t want to accept that finasteride is the culprit, or doesn’t agree with the proposed mechanism behind finasteride’s effects, they won’t. End of story. [b]As long as the cause and cure for PFS are unknown, there will be enterprising researchers interested in applying for research grants to test away hypotheses. It would be criminal to censor hypotheses. It’s an irrational thought to fear that some credible magician scientist would otherwise help us out, but would stumble across a recovery thread and find the discussion so offensive that he would run the other way. It’s really silly if you think about it. And it’s silly to WANT the doctor/researcher to look away from a thread like this.
Some people want to discount the significance of the immune system, it’s relationship with the gut, the significance of inflammation to health and by extension sexual health or recovery to homeostasis. These people are intellectually dishonest. The studies and scientific literature are out there. Finasteride does not have to be linked to any of these things in an existing published paper to justify exploring these avenues. Since PFS is not yet mainstream, not yet cured, everything that possibly exists in the phenomenon cannot, by definition be published: it has not been discovered yet. It’s up to us to think outside the box and come up with as many testable hypotheses.
Finally, it would be a grave mistake to put all of our hopes in one single theory, one single study initiative. It would be a mistake to assuming that there is only one such research initiative going on behind the scenes. I’m grateful for Mew’s hosting of this forum, I’m grateful for Awor’s initiative, but I’m also grateful for other PFS doctors and researchers who are NOT beholden to any one pet theory. There ARE scientists/doctors looking at immune issues; to them, this is not an “alternative” theory, it’s a significant avenue to explore. Thank God not every scientist suffers from confirmation bias and shoddy scientific method.
The WORST possible thing that could happen is complete paralysis of individual thought. GROUPTHINK is a terrible defeating disease that many on this forum suffer from. If YOUR pet theory is SO strong, it should not be threatened by other explanations. IHP’s recovery should not throw such a monkey wrench. It’s SAD that IHP predictably came under fire for reporting back to a community of sufferers.
I agree. Maybe I’m guilty of attacking, but it was all the theorizing I didn’t like. IHP wasn’t intereted in theorizing, only reporting his results. And I thank him for that.
The above links outline what PFS is. If this is not you, then you may have other health conditions unrelated to the drug, or pre-existing conditions which were possibly exacerbated by the drug. Regardless, the above links outline the problem in detail and that is what this problem is about.
The issue of hormonal changes and side effects from Finasteride (sexual, ejaculate changes, loss of libido, genital shrinkage/numbness etc – androgen deprivation | cognitive, memory impairment, anxiety, depression – neurosteroid inhibition | physical, muscle loss, weight gain, gynecomastia – androgen deprivation/estrogen imbalance) have all been documented in clinical trials or research papers on Finasteride.
The reasons for these side effects occurring when taking the drug is not the mystery… the reason(s) why they do not resolve post-drug is. Again, as outlined in the links above, as Dr. Traish himself notes, “it is as if something shuts off biologically, and stays that way… Biologically, something gets shut off and gets shut off once and for all… Traish thinks that may be because nerves that are maintained by dihydrotestosterone become permanently degraded and can’t be repaired even after men come off the medication.”
Given that Finasteride is a 5AR2/neurosteroid/androgen inhibitor, and is often presecribed as androgen deprivation for prostate cancer, and that the side effects of androgen deprivation are well documented and parallel those of men suffering from persistent Fin side effects, it is logical to conclude that the problems we are dealing with is a result of damange from androgen/neurosteroid deprivation and hormonal/estrogenic alterations to homeostasis (note gynecomastia/male breast cancer warning on package insert).
Again, this has nothing to do with bacteria, toxins, non-descriptive parasites, candida or any such things. If one has been diagnosed by a qualified MD (not an alternative health practitioner, naturopath etc) and has had medical tests that conclusively prove such is the case (none that I have seen, to date), it STILL does not mean these other issues are even related to Finasteride use. They could have been picked up down the road, whether one had taken the drug or not.
Anyway, I agree this thread is about IHP, and these arguments about theories are simply detracting from this. Point is, we took a feminizing anti-androgen drug and this forum is for people suffering from the same condition as a result of Finasteride (PFS as outlined per links above, medical journals on the problem etc). If you are “not suffering from same condition” as prop puts it, you may need to investigate other areas for your problems that may be unrelated to Finasteride use.
and how to explain recoveries?? matis and correiovip claim to be almost 100% normal again…it took them almost 6 years but it has happened…also IHP …and JG who is now back to pfs mode… anyway im getting my blood tested and we ll see…maybe thats one thing that is keeping our bodies to really balance our hormones or even make them work properly
Yes, this IS the mystery. An unsolved mystery. And until it is solved, ALL hypotheses are plausible. Especially ones that involve recovery. Did Awor’s gene re-expression therapy experiment work? Has anyone been genetically modified to recovery? Not to my knowledge. So the mystery looms. And I would actually rephrase the “mystery” as being: Why does the body not return to homeostasis after cessation of finasteride? In other words, what is the impediment to hormones, brain function, libido, erectile function not returning to normal?
Traish THINKS that nerves are permanently degraded. It’s AS IF [but not necessarily/not proven] something gets shut off. And he may be right. He’s a wonderful gentleman, I find him to be very sincere and passionate about this subject, I’m glad to have him working on our problem. But this hypothesis needs to be tested. Are these nerves indeed permanently degraded? Maybe. Maybe they’re damaged to varying extent, maybe some can recover, while others cannot. Maybe there’s an impediment to them healing. Maybe their immunity is degraded. Maybe there should be experiments which test BOTH hypotheses. Why in fact, there IS a neurologist observing and studying neuropathy of the pudendal nerve (inflammation and edema) of PFS patients in France. Contact Blase if you want to take part in EMG testing which can reveal this. http://www.propeciahelp.com/forum/viewtopic.php?f=27&t=5661&hilit=pudendal+neuropathy
In Blase, this spot of inflammation is precisely between the gut and the prostate. Ah, but what is the cause? Well…it COULD be gut inflammation. It COULD be inflammation due to infection…we don’t know yet…but it’s a worthwhile track to pursue, is it not? Or should we hold our breath for the results of ONE other study?
It’s logical to conclude that damage occurred via androgen deprivation, but what the damage is, is not completely known. (We know of SOME physical damage, i.e. fibrosis. But we cannot explain why hormones continue to be unbalanced in some, or appear “normal” in others who still present with symptoms). And androgen replacement still has not cured anybody. The profiles of PFS guys mirror the profiles of many different sexual disorders, the constellation of symptoms overlaps with many different conditions, and does not only parallel androgen deprivation. Is is not logical to only fixate on the removal of one hormone and not the myriad of signaling changes that occur when you alter one parameter.
You do not know what this is all due to. None of us do. You cannot definitely conclude this. Nobody can say with certainty that altering hormones in males does not lead to impaired immunity and further complications such as chronic infection or inflammation. It sure does in women who take birth control. Ask THEM how they feel about altered vaginal flora and candidiasis.
You also place too much faith in “qualified” MDs. The same guys who prescribe whole grains (you know, the ones with gluten, wheat germ agluttinin, lectins, phytates and a host of other gut-irritating, anti-nutrient proteins) and polyunsaturated n-6 fatty acids (the opposing, inflammatory counterpart to anti-inflammatory omega 3s) for health because they believe the lie that saturated fats and cholesterol are the culprits in heart disease (you know, cholesterol, the basic building block of all cell walls, the brain, and the precursor to sex hormones) all while metabolic syndrome escalates. All based on studies. Studies that have been proven false. Studies whose abstracts contradict the data contained in the actual studies. (All this has been exposed, admitted by the very institutions like Harvard which originally peddled this idea. The data was cooked, beginning with Ancel Keyes, the father of the lipid hypothesis. But don’t take my word—it’s ALL over the internet; published meta-analyses firmly conclude that the link does not exist. High TRIGLYCERIDES and Low HDL {not high LDL in and of itself}, which are a byproduct of doctor-recommended processed/low fat fake foods, “vegetable” oils, etc.–THOSE correlate to cardiovascular event risk). But I digress. I don’t mean to go on a tangent here, but excuse me for not having faith in the existing medical establishment which studies disease states and then prescribes a pill to counter each one. Excuse me for believing that illness is not a deficiency of a man-made drug. Excuse me for not bowing down before these MDs with impressive credentials. Do you think that IHP cares if some “objective” test by the establishment proves something to you?
[Size=4]What does this mean? If you suffer from the same side main sexual and cognitive side effects as everyone on this forum, you have PFS. Did IHP, who had all the same side effects as all of us finasteride-takers not have PFS? Or did the report of his recovery negate that he had “official, Mew-sanctioned PFS”?[/size] If one recovers by treating based on a theory other than your theory, then they never really had PFS? By definition, then, PFS is an incurable reaction to taking finasteride, eh? If 10 people reverse their PFS, and it’s by treating infection or something other than your pet theory, then they all don’t have PFS according to you. At what point might you CONSIDER revamping your theory and definition? Do you realize that there are people who’ve reversed their PFS illness? But they find it a waste of time to come back to report publicly because they’ll get the same treatment IHP is getting? The same questions to their credibility? What kind of environment are we promoting here???
thats what happens when people with good sense have the nerve to fight back, its so weird that some people here are so snobbish to the point it almost seems like you DONT WANT IT TO HAVE A CURE, saying that maybe the people who recovered after 6 years didnt actually have pfs,how can you tell?? you dont even know what pfs is really…you cant just assume someone doesn;t have it…if you took propecia and had ed, libido and cognitives issues after stopping it…then yes i would say its pfs FOR SURE. so keep on talking whatever you want , men are recovering…i’ve talked to at least 10 guys who took finasteride and bounced back after 1 year or so…they are just too embarassed to talk about it…recovery is possible and no one is putting that away from me.
problems(low libido,cognitive issues) with medication that changes natural hormones in the body are nothing new… alternet.org/story/12087/?page=1
it took this woman 2 YEARS to enjoy sex again…she described it as painfull and irritating.
So if you really think this is a problem that doesnt have a cure…then i dont know what to tell you.
I am not so sure about the nerve damage Traish refers to. This is just my own experience, but the two times where I have recovered (once perfect, once close to perfect) the sensitivity came back (not as strong as pre fin, but still very present). Also, even when I feel bad, it does fluctuate a bit (sometimes it is a bit sensitive and others it is 110% numb). So, in my case, it does appear to fluctuate. It seems as if when things are firing correctly or at least semi correctly, the whole syndrome as a whole dissipates, including sensitivity. This is just my own experience, not an argument or anything. It seems like if the cells are firing it is good, not necessarily that the physical nerves are destroyed. Bit I have no idea in reality, I am just stating my own experience.
