Theoretical discussions related to IHP's story

I’ve never unequivocally stated that candida is the universal cause of all things PFS. I have expressed my OPINION that finasteride and hormonal disruption may have lead to immune dysfunction, as this has felt intuitively immune-related to me. You are free to disagree (and do so emphatically and relentlessly). :slight_smile:

You, on the other hand, are stating that you want scientific validation, but you are prematurely drawing inferences from studies that have not been published. You also narrowly define PFS as the condition in which YOU and YOUR symptoms are irreversible, permanent and molecular in nature. Therefore, IHP must not have had PFS. This is so absurd.

[Size=4]Mew, you never answered my previous inquiry: Did IHP not have PFS? Or do you not believe his recovery? Or do you attribute it to the androgens he messed around with ages ago? Or is he doomed to relapse? These are all things you hinted at in the very first response to IHPs recovery announcement.
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[Size=4]Please state your position clearly, Mew. Tell us in no uncertain terms, is the definition of PFS an irreversible genetic change that occurs in some men with finasteride use? Anyone who recovers (like IHP) must not have had PFS? Seriously…what do you suppose happened in IHPs case, please elucidate.[/size]

Because if your version of PFS is something distinct from someone who suffers from brain fog, loss of libido, loss of morning erections, erectile dysfunction, hormonal imbalance after using finasteride who then reverses his condition…if IHPs “brand” of PFS is not PFS, if it is something else that happens when you take finasteride, let’s call it FinFucked (that just so happens to have all the same exact symptoms as your condition), then why are you so opposed to people trying to cure and reverse being FinFucked? If you don’t have a marker to know which camp we are in, MewPFS or FinFucked, then why not let us play in “alternative” land and worry ourselves with itty bitty microscopic creatures and silly fears of infections that you’re so certain can’t possibly be responsible for illness?

theres no point on this…if u want to diet,then diet. period. i dont need anyone;s permission or opinion to do so…im going for my second week without carbs and so far so good…tomorrow im having my blood tested on a dark field microscope :smiley: :smiling_imp:

This is the best post i have seen in a while, if you think its candida or carbs or what ever, do the diet, take the drug, do what Ihatepropecia702 did.

And if and when you get better post about it, otherwise you will continue to go in stupid circles.

Let me just revisit this post of yours…

Mew, you keep doing this whole unique diet thing a huge injustice by throwing “eating healthy” in the same ballpark as very specific diets with different types of supplements etc.

I mean, it’s like saying “lots of guys have tried hormone therapies”. Too generalistic and not really helpful given the intricacies involved.

[Size=4]On The Evils of Wheat[/size]
Dr. William Davis on why it is so addictive, and how shunning it will make you skinny
www2.macleans.ca/2011/09/20/on-the-evils-of-wheat-why-it-is-so-addictive-and-how-shunning-it-will-make-you-skinny/

[Size=4]Don’t Eat Toxins
[/size]
http://chriskresser.com/beyond-paleo-2

[Size=4]Gluten: Bad For Us All[/size]
greenmedinfo.com/blog/gluten-bad-us-all

Read these articles through. Gluten is just ONE of MANY offensive proteins contained in grains/wheat products.

It really rubs me the wrong way when people value hormones and the endocrine system but ignore the role of nutrients in forming the expression of these things.

Here’s the deal: we’re in critical condition. It is irresponsible to downplay the significance of proper nutrition in repairing our systems.

Too low carbohydrate could impair your T3 level and immune system

Too low iodine could impair your thyroid.

Too much iodine if you have Hashimoto’s Thyroiditis could give you goiter. But the excess of iodine could really be an imbalance of Selenium.
perfecthealthdiet.com/?p=3621

See where I’m going with this?

Nutrition is complex. And vital to health. And IHPs regimen was based on a foundation of 10 days of fasting followed by low caloric intake all the while he took anti-pathogenic substances. Can we get back to discussing these nuances and sharing thoughts and experiences?

My opinion is that all PFS symptoms COULD affere to other possible ill conditions

My opinion is that only finasteride can cause PFS, but maybe sometimes some people for some other reasons could develop “PFS like” symptoms.

So the basic question is:
Who is here genuinely pfs sufferer?

only with a scientific proven sign we can identify without doubt a pfs sufferer from a “pfs like” sufferer.

lot of sympt could affere to other things.
this could explain some recoveries with “strange medications”

mew has right to think that is more reasonable stick to a scientific approach to pfs. Ther’s a theory and researchers on it, so spreading other “weird” theories could be detrimental for the credibility of PFS

When the PFS sign will be disclosed, lot of people here could be happy to discover that is not pfs sufferer… but have “pfs like” problems

If you have noticeably lowered sex drive or brain fog after discontinuing finasteride, you without a doubt have PFS. It’s a side effect that never came back. Just because some people are more severe cases, doesn’t mean they are the only ones to have “real PFS”. Everyone on this forum is here because something never went back to normal after finasteride use, regardless of what the specifics are.

If you guys want to start talking about what “real pfs” is, what we should really be doing is breaking symptoms up into categories. For example, for people that are solely effected by brain fog have brain fog PFS, or only lowered sex drive another PFS, or more physical symptoms/sensitivity issues another type of PFS. But to say they don’t have PFS is not true.

i don’t want to start a diatribe

the problem is that everybody here claim to have pfs, even if have only part of the symptoms, that COULD affer to pfs. that’s why imao some “weird treatments” has shown efficacy.

I can’t say anything. i can only wait that research show a undoubtable sign that a pfs sufferer must have
(particular molecular - epigenetic marker or other things)

than we can split pfs sufferers into categories

this will put an end to the proliferation of theories

PFS means you have side effects from the drug that have persisted after you have taken it. Everyone here is in that category if they took finasteride, developed any side effects from it, and they have not gone away. There is no “part of the symptoms”. If you want to bring up particular molecular damage done, which may or may not be everyone here, I don’t think it should be the deciding factor of any kind if someone has persistant side effects or not. It would be completely unethical to consider someone who has sexual dysfunction from finasteride use, yet may or may not have this molecular damage you speak of, and then label them as not suffering from this condition.

it’s not a matter of ethics, but a matter of science.

we must have an objective sign in common and it has to be shown.

this “unethical discrimination” will be useful to treat better our possible condition

for ex. if some of us suffer only by parasites infection/autoimmune prob/chronic prostatitis/sistemic mycosys ecc.

i don’t think is a bad thing know some fore sure.

instead of being all pfs sufferers is better that some could hope to discover other possible cause (maybe more easy treatable) of problems

viewtopic.php?f=4&t=3180&start=80

[Size=4]What Xhorndog is emphasizing is that although he is still suffering from persistent side effects, addressing these digestive problems has helped improve his health more than any other treatment he’s tried. If you already had a healthy diet such as Mew, this factor may not affect you as there is nothing to improve.[/size]

I don’t see the argument until you start making assumptions.

What needs to be emphasized for those who are not already living healthy is that they should be given they have a serious health problem - PFS. There will be various opinions about what living healthy means and this is ok, everyone has their own strategy and tolerances regarding health practices in a normal population.

Personnally, I don’t think any of us developping typical PFS symptoms after discontinuation of Fin, has any other condition than PFS, but that’s just my point of view. Saying the contrary sounds a lot like what we are often told by Doctors: “a thousand things may lead to these problems you have: it is not proven it is Finasteride”

But the problem is, some people here doubt the ones who recovered had PFS because PFS is thought to be irreversible, and why is it thought to be irreversible? Not because people suffer during many years, since there are a few recoveries, even after many years. So why? Because the scientific study gave a proof that something was irreversibly altered or damaged?. In that case, I understand the only way to know if one has PFS is a scientific sign.

Still, we may wonder why so much people get PFS-like symptoms after quitting Fin, it’s quite a strange coincidence:

So maybe there are different levels in PFS. Maybe there are points where you are still not in the “irreversible PFS zone”, points where not too much damage was done. Maybe that’s the case for people who recovered from a way or another. Maybe there is unfortunately a point reached where the damage leading to PFS as an irreversible condition is done. But if that’s the case, we should expect the study show different results on the patients: some may have the “doomed mark” and some not. However, I understood that the patients showed signs of changes at the molecular levels, and I don’t recall it was any difference between the sufferers. the difference was between Finasteride users and normal/hypogonadal men.

Maybe it’s the question for which we need to have an answer:

Is the “PFS marker” present among everyone of those who quit Finasteride and got/kept problems?

Awor’s quote, hopefully this is the case and still stands ture.

“The mechanism we are looking at is, by itself, capable of explaining every single symptom that we know about (including most hormonal abnormalities). In other words, if we can find a way to counter-act it, we can theoretically solve the whole problem.”

So I think this is the best approach now, patience:

Maybe we ought to take a break; when I read the many posts here, the single fact that for any given treatment every shortcoming has occurred (worsening of the situation, feeling better, nothing changing) makes me feel there is no point in trying to play researchers, because, after all, everyone of us was feeling great or good before Fin and got ill during/after, so it makes sense to think the root cause is the same, but still no one reacts the same to the same treatment, so there is no point in trying to make sense of all this mess by ourselves. (of course we can experiment in order to maybe feeling better, but theorizing is useless to me)

I’m eager to have the study results!

The point is, maybe PFS symptoms are caused by finasteride in different ways or a different combination for each individual:
• Genetic Change (If this bares out to be true for a certain % of the PFS population, we could further distinguish this as GeneticPFS, GPFS)
• Infection
• Inflammation
• Prostatitis
• Fibrosis
• Hypothyroidism
• Adrenal Fatigue
• Etc.

Therefore, wouldn’t we want as MANY research initiatives, as MUCH data as possible, and as MANY potential markers/screening tests for PFS complications?

This is my problem with clinging only to one narrow definition of PFS. It limits the scope of scientific inquiry and treatment ideas. We cannot assume that all those afflicted with similar GENERAL constellation of persistent side effects post-finasteride cessation ALL have the same etiology. And even if this mysterious molecular marker that we keep alluding to is found, we do not know, at least at this point in time (since the study has not been published) if this is the CAUSE or a SIGN of the condition.

Let’s put it this way. If you want to define PFS as strictly genetic/irreversible, then IHP had a “form” of PFS that was just as terrible symptom-wise, and he was able to reverse it. Wouldn’t you want the option of considering if your condition was more like his? If so, it would be fair not to dismiss discussion of potential mechanisms that IHP addressed in his treatment plan. Even if we can’t connect all the dots precisely, even if stuff just doesn’t totally make sense, can we not all collectively admit that there is much more that we do not know than we know, and so let’s just allow ideas to percolate?

Right now, in addition to the molecular penile tissue research (which is fantastic), there are other research initiatives taking place:
• Pudendal Nerve EMG testing
• Trans Rectal Ultrasound (TRUS) testing

We just SHOULDN’T put all our faith in one theory, one universal concept. There is great variability within this population. Why can’t we be more open-minded until absolute, indisputable announcements are made? At this point, we’re all speculating, we’re all in this together, let’s not close any doors, let’s be a little more open-minded and humble.

Its reasonable to assume that finasteride has effected different people in different ways due to the variety of symptoms.

For example, erectile dysfunction that started on the drug and never went away is best explained by apoptosis of sex-dependent tissue or similar (see Deca-Dick). Its only the other side effects and the getting worse after stopping thats actually difficult to explain.

My list of disease mechanisms that could cause any of these persistent side effects would look like this;

• Apoptosis/Cell death
• Infection
• Inflammation
• Autoimmune reaction (without inflammation)
• Brain damage
• ‘Epigenetic Change’ preventing androgens from working (other than those listed above)
• Hypogonadism

^its pretty clear some of these have been discounted already.

Good list, Oscar.

I would also add Neuropathy.

Which could be caused by inflammation (which could be caused by infection or by physical nerve degeneration).

Mew don’t take these BS seriously. whether we find the cause /treatment or not, you and Awor are the real heroes. I know it takes a lot of energy, time and money to do these all, it is more difficult when you are suffering yourself. Honestly after staying on computer for half hour I get exhausted. I don’t know how you are managing these all without asking a single penny from any body. Please don’t loose ,keep your efforts up. We need you. I don’t know how much worse I would have got by the idiot doctors if this website had been here.

The BIG problem here, mew, is that you and awor are, de facto, the biggest gatekeepers to PFS research… with this comes responsibility, and the duty to aim for maximum integrity and impartiality in research and moderation of the forum content.
You and awor have already chosen a very narrow path a long time ago (based on observation your individual cases), a very interesting one for sure, and promising, but you do not have the moral right to relentlessly censor and discredit all the effort to explore other sensible avenues of research (based on empirical observations and mere logic) only because you have invested so much in that AR receptor theory. Plus real scientific scrutiny (and mere reason) should not let you put all your eggs in the same basket, because even when your little study with a very limited sample hints that some AR dysfunction may be implied into the clusterfuck that is PFS, it will NOT be enough proof that any other exploring and theorizing should be abandonned, as you already seem to imply. Also, PFS may very well represent many different conditions with even more different etiologies (in addition to the common root trigger which is the exposition to finasteride), that is an idea we absolutely need to keep an open mind to.

We keep saying that in light of IHP’s recovery and other hints before him, PFS seems like it could very likely be linked to a disruption of the immune system allowing chronic infection(s) (in which candida may be implyed) and/or inflammation to settle in (and induce neuropathies via edema etc etc). We do have several (proven) reports of prostatitis (diagnosed by reputable doctors) and pudendal neuropathies here.
You then quickly and condescendently reply that “candida” or “leaky gut”(with f**ing brackets of course) cannot possibly be the cause of our multiple problem, assimilating us to the crowd of gullible hypochondriacs over at curezone chasing every stupid quack treatment one after the other.

You then once again proceed to hide yet another theoretical discussion that does not fit within the official MewPFS frame and theories out of the public eye. This deprives us from reaching out to more people that will not bother to sign into this discussion forum, and then, maybe incite more similar cases to report why they think the theory could apply to their medical cases, and hopefully ultimately reach out to researchers/doctors interested by it.

I do hope awor will bring the truth down from the mountain, but when I see how biased and illogical (ie presenting selected observations as universal facts - awor did use this word several times way too liberally) you guys are most of the time, I highly doubt I can put all my hope in you guys, and wish I could use this forum to share and explore, and put more scientists on different perspectives. But you simply decided that you will not let us do this.

Mew, it’s time people tell you that your actions do NOT promote the true advancement of science.

Amen! Well said, Venceremos.

It’s SAD how many people talk offline instead of the forum because free thought and discussion are not promoted here. The database of successful and unsuccessful treatments is consequently much smaller than it would be if there was incentive to freely reporting back experiences. The odds of finding a solution are thus severely reduced.

There are fewer established “facts” than a lot of the loud voices on the forum would have you believe. Just because somebody cites a study or quotes a doctor doesn’t mean it is so. We are just amateurs connecting dots. Studies can show anything they want to. One day coffee is bad, the next good. Eggs bad, then good. So ANY account of recovery must be strongly considered, and assumptions revisited in light of new evidence. THAT’s being scientific. Clinical, empirical experiences and successes DO matter.

I, too, am concerned at the level of presumption and authority with which laypeople speak on this complex condition.

The reason I don’t completely quit the forum (as I often want to) is because I think it’s THAT important that those who can see the harmful bias that pervades the forum SPEAK UP. New PFS victims are popping up all the time and looking for direction and are being thrust into obsession with hormones. I wish I had been exposed to “alternative” theories before patronizing mainstream “PFS experts.” But routinely, recoveries that do not fit the decided-upon theory are ridiculed, diminished, and tucked away. That’s why it’s good that this thread raises an inconvenient stink.

Even worse, some accept the irreversible genetic mutation theory as fact and lose all hope and fight in them. This is tragic.

The tone and narrative has to change. We can’t afford absolute certainty on anything. We have to stop the in-fighting and promote free expression without censorship. We have to stop pushing people away, we need all the brains and test subjects we can collect.