He never said his approach was the “ideal” approach.
He never discredited the “scientific” efforts going on in the research labs.
He’s simply battling his condition the best way he can.
At the end of the day, it’s probably “symptom management” but he has a right to take any approach he sees fit.
There are regular members of the forum who are looking for methods to allay their symptoms.
I hope this person continues to post and add to the community.
We should be focused on narrowing down root causes/treatment options. Real world investigations narrow down possibilities. On this board, everyone keeps expanding and expanding the possible causes of PFS. The result is similiar to the 9/11 Truth Movement, where the list of suspects and possible scenarios on 9/11 keep expanding. All that does is create a bunch of incohesive, incoherent narratives that feed off each other.
I think you’re confusing us with scientists. Should non-scientists not post at all now? I guess you better pack your bags.
This board has a support component to it. Many PFS sufferers come here because it’s virtually the only show in town, and the only place where they can share their experiences. As such, you have to accommodate this segment of our group, which probably constitutes the majority.
Since the OP feared this infighting would happen, that’s all I’m going to say.
That is a strawman argument. No one is claiming non-scientists shouldn’t post. Members who’ve put in the effort to get PFS on the map and into research institutions are complaining of the alternative medicine and pseudoscientific claims people are making, such as this: “The root of many of our problems is digestive”
It’s best for him and the rest of the community to go to an alternative medicine forum if he wants to post such things.
Yes, Second Amendment is absolutely right. Everyone is trying to look for something that goes beyond the scope of what Finasteride studies are known to do.
This is a complete waste of time and adds absolutely nothing to our overall cause with regards to media, scientific community, and our own attempt at treatment.
There is a generally accepted laundry list of side effects from propecia. The underlying cause is the same among all of us. Yes, the SYMPTOMS and extent may be different but the root cause is the same. I would say if you cannot explain all the symptoms then the theory is not correct. It really is that simple IMO. Candida does not thin your wrists and arms or curve your penis. Candida is therefore out IMO.
Just a quick reply to answer the comments to my post.
First, I am a very rational guy, not a crackpot hippy. If you want some idea of my credibility, I work for a ‘think tank’ and did a science degree at Oxford. I’m not a looney and I am very logical in my thinking! I absolutely value scientific research, and as I said I truly believe that a solution could come from this ‘sphere’. I value enormously the work that some people have done to fund research, and I myself will donate to the PFS Foundation. All I am doing is treating problems that I know that I have, which definitely include those I listed in my post. I’m not necessarily saying that they will lead to a cure; indeed I have never said that. I’m simply pointing out that certain symptoms have DEFINITELY resulted since I took propecia, and that many of these are digestive in nature. I my case, that is undeniable, so why treat me as though I’m crazy? I have proven that, for me at least, these problems are real and are linked to having taken propecia. At the very least I am hoping to manage my symptoms through my approach, and if I can do so then this is valuable research for us all, right?
Second, I also agree that it may not be helpful for me to be posting a load of ‘alternative’ approaches at regular intervals, particularly if we are trying to earn the respect of the medical community. I myself have asked a few of the endocrinologists I’ve seen to look at this site so they can believe what is happening to us. That is why I will limit my updates to 6 month intervals. Don’t worry, I won’t be spraying ‘holistic’ posts all over the website; as I said I am simply trying to contribute to our understanding of what works and what doesn’t.
But what I do ask is that you consider that my treatment protocol is not a crackpot approach to medicine. Actually, as a lot of us have found, many existing medicinal practices are quite illogical in nature. Ie doctors generally treating test results rather than symptoms - something that many of us can relate to. Or even a society that permits smoking when it is proven to be so bad for you. The mainstream is not necessarily ‘right’. If I have learned anything from my propecia nightmare, it is to see things from a different perspective and to see how crazy some of the things that humans do are. Additionally, consider that some ‘alternative’ approaches are increasingly being accepted by the mainstream. Look at the link between leaky gut syndrome and autism if you would like an example. Again, these are not crackpot theories, they are real problems. I used to think they were just conditions made up by quacks, but now I realise they are not.
Finally, I will again APPEAL that we all work together. Yes, Boston, you may be right that all the money I spend will get me nowhere, but just think, what if the solution to PFS does come from left of field - from the alternative sphere? It may do, and we can’t rule that out. I’m working on that side of the problem, and I hope that this complements the work of others on encouraging scientific research. I have volunteered for Awor’s medical trials myself and fully support that work; my view is that I am complementing it. All I ask is that you also do not entirely discredit my approach when it has yet to be proven wrong. We’re all in this together so let’s stick together!
@visionquest- No one remotely said non-researchers shouldn’t post. But supporting one another in this community does not include the endorsement of new age healing, nonsense and crackpot ideas with zero scientific basis. As has been noted by others who are able to understand where we are right now - it does more harm than good by making the rest of us look foolish by association. This community remains under the microscope. As Franz posts about leaky gut, the root of PFS being digestive issues, etc. the foundation is simultaneously trying find researchers willing to investigate PFS and the press and medical communities continue to view what comes out of this forum. This needs to be repeated until everyone “gets it”.
@Franz- The statements in your posts are uninformed, crackpot and a complete embarrassment to this community. No one is arguing with you or “infighting” because you are not making any arguements based on one shread of science. I am simply pointing out your statements are 100% wrong. If you want to donate to the foundation that’s great. I’ll match dollar for dollar whatever you donate this week. Just PM me the amount and I’ll check with the foundation. Medical research is the only way we are ever getting out of this mess.
boston332 is 100% correct. Posting about leaky gut etc. is simply a total waste of time. If some guys are posting about this, and even worse wasting real doctors time with quakery, then this is potentially very harmful to people really suffering.
This really should be obvious but some poor sods just dont undertand and may never ‘get it’.
Therefore they should post on another website or there should be another hidden section for alternative-medicine where these types can talk rubbish to each other. It might also be worth having rules for the ‘Theories’ section like this:
FranzFan, please continue to post your experiences, I look forward to your next report.
I also have digestion issues and have developed severe food allergies since stopping propecia. I’m curious to know if your diet and supplements with alleviate these problems.
I will no longer post here unless I have significant progress to report; I can understand how you want to keep the forum to a rigorous scientific focus - fine - I will post on curezone etc- as you suggest. I am only trying to help explain what is helping me and what I have learned, not to detract from ‘scientific’ progress or to suggest that I have a cure. I do not and if you read my posts, I never have!
But I have to say that your attitude is anti-progress, and presumes totally that ‘alternative’ medicine is quackery. Actually, many ‘scientific’ doctors, in whom you seem to completely trust, combine the ‘scientific’ and ‘natural’ approaches. It’s called being holistic. We have a medical system that treats people in silo, and often makes no link between diet and illness. Go see a GP and in many cases they’ll tell your test results are in range or out of range, maybe give you something to replace what you don’t have, and send you on your way. It’s usually about symptom management, not finding the root cause. Logically speaking, that is insane and I can’t believe that you cannot see that even a little bit.
Finally, I think that most of us can relate to a digestive component of this illness, and that this is a ‘persistent effect’ of PFS, so why not post about this also? Yes, I may not be posting about libido, but there are other side effects that we have too, and for me (and for many others), digestive issues are a serious problem. If I even attempt to eat wheat I get severe constipation and an outbreak of spots, headache, sore throat etc- This never happened before propecia. I’m simply saying that this aspect of our illness clearly relates to digestive issues at least in part caused by propecia. Why is it a crime to raise this side of the problem, in a thoughtful and polite manner, as I have? I just don’t get the animosity on this forum to anything other than hormone-based approaches, and I think it’s very single-minded and not helpful at all.
Franz, plz keep posting here. oscar is in horrible condition and keeps getting worse, trying to listen to him as if he knows what is talking about is like putting my dog as president of the united states. meanwhile, people who did take the “alternative” approach actually made progress, instead of moving backwards like him. gut permeability can be tested, so go get tested if you think you have it.
The arguments in this thread are really, really baffling.
This is the only thing that matters here…
Glad to hear you’re improving man. Theories and online debates about arcane myelination pathways etc are one thing… real progress towards improving your own day-to-day life is quite another. I appreciate the updates and hope you let us know what helps you in this awful battle.
What exactly is “baffling” to you? If you value the claims of someone making extremely dubious statements with no scientific basis routinely over the credibility of this community that is indeed “baffling”. I had posted on another thread someone had recently told me that dealing with the guys on this board is like throwing your energy into a black hole and that person making that remark was onto something. I’d deleted it thinking it was a bit harsh. I’m glad I saved it for now.
Well there’s certainly no reason to rehash this argument boston, as you seem pretty entrenched in your position,
but for what it’s worth;
But what strikes me as absurd is that here we are… all stumbling in the dark and trying to make sense of this situation… and somehow folks are taking umbrage at this fellow’s efforts to get better on his own terms. Why?
The dialogue here borders on abusive. You don’t think Franz’s protocol will do anything for him? Cool… who really cares? Is this guy just supposed to sit in a corner and die silently because you think his methods (and perhaps more importantly… efforts to theorize about his own personal situation) are suspect? I think you need it to dial it down about a hundred notches and simply stay out of the thread if it upsets you.
Just my opinion.
well said komas. i’m for anyone sharing anything that has helped them feel better whether or not it has ANY scientific backing at all. if the theory sounds like quackery to you - don’t try it. or challenge it. but i don’t think its right to discourage people from posting. im interested in all theories.
I don’t think he’s objecting to his anecdotal reports. I believe he finds statements like these belittling to both PFS sufferers and researchers.
“I realise that our symptoms are actually not dissimilar to those of many other people who did not take finasteride, but, due to other reasons, have developed the same problems.”
“The root of many of our problems are digestive”
I know Boston332 has put in a lot of effort towards the PFS Foundation and PFS Research. I can see why he’d be upset when people try to downplay a seriously crippling, life-alerting disease as “digestive issues.”
I don’t hear many positive reports from the “science” guys.
Probably cuz you’re waiting for the cavalry, aka men in white lab-coats, to publish a cure.
Keep waiting guys. In the meantime, enjoy your impotence.
There are some of us doing a whole-lot better on the so-called alternative stuff.
Yawn…
I’ve come to expect these types of breathtakingly ignorant posts from you but you’ve even outdone yourself. Strong consideration should be had toward limiting your posting privledges. The thought that you or certainly anything in this thread is going to contribute to the discussion here is laughable. If you have the answers lets have them. What are these treatments that you’ve discovered but Shippen, Jacobs, Irwig, etc. couldn’t figure out? You have zero answers now and you won’t have clue one in a decade from now. As you have no idea what is going on research wise you again are speaking out of complete ignorance.
Ten years of guys like you theorizing = no answers. One year of research and now actual data and numerous new avenues to investigate and possiblities of a future treatment. Somehow this escapes you as have many other things in the two years you’ve been on this forum.
Researchers/Docs have been approached to join in the discussion here. They’ve passed on that offer. Members like 19, Awor, etc also no longer post in the forum. Some with medical backgrounds have cited the exact type of content in your post. Again, blackhole…
You took the words from out of my mouth.
I really believe that Mew has to make a clear statement about the objectives of this forum. If it is to promote a singular theory to the exclusion of all other thoughts, he should make a proclamation to this effect. Posters shouldn’t be attacked by the likes of you and your ilk for merely expressing their experiences.
In his opinion. Why is that a problem? And who has he belittled? Honestly I think if anyone reads through this thread honestly it would be difficult to conclude that Franz has made any sort of authoritative declaration about PFS, it’s root causes and it’s treatment. What I see here is simply a sick guy trying make sense of his situation and posting details about the efforts he’s making to try and get healthier.
This notion that doctors will write off PFS altogether due to the online commiserating (and speculating) of sick people who have been given very little recourse is kind of silly. Besides which… this thread is now hidden.
I don’t see Franz downplaying anything. He has simply advanced his understanding about what may drive this condition… anyone is entitled to disagree but it would be cool we could all display a little empathy and consider that the guy on the other end of that monitor is also sick.
Thanks again for the efforts you’ve made to publicize and draw attention to PFS Second Amendment! That goes for any of you (including boston) who have been involved in advancing the overall cause.
Anyways I’m going to go back to lurking.