My protocol - a test case for all of us

General Discussion
#69

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.

#70

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.

#71

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.

#72

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.

#73

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;

  1. This guy has decided to try something. As a result of his protocol, he now feels at least somewhat healthier. That’s unequivocally excellent… and the fact that anyone could possibly be upset about this is absurd in the extreme.
  2. No one really knows what’s going on with us (beyond that we’re all facing some sort of chronic illness in which finasteride is implicated). You’re entitled to your skepticism about ‘candida’ and ‘leaky gut syndrome’ (etc) as being meaningful culprits in PFS. I know I’m not sold yet (as I’m definitely not convinced about their utility/merit as useful explanatory tools for understanding this condition).

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.

#74

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.

#75

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.”

#76

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.

#77

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…

#78

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.

#79

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.

#80

make another forum where all the “alternative” treatments can go and make it not viewable for the public, that way “researchers/docs” that are lining up to help us don’t have to see it if it’s such a problem, and people that don’t agree with it don’t have to go there.

#81

No offense, and I am just going to add to this post after taking a look at this from an outside perspective since i haven’t contributed to most of these posts…

This is ridiculous, arguing and saying people are 100% wrong is complete arrogance. This thread was aimed at a progress log including the OPs routine. The OP is allowed to try whatever they like and to report on this…this is surely a basic right for the forum and be encouraged. If this is an issue then why not make some forum sections private and not open to the public?? There are a lot of controversial areas in the medical world, some of which have been proven to work. How is this not the same?

There was a documentary recently on TED recently which tells the story about how a woman managed to treat her symptoms of MS enough to walk again and go back to a normal life…the theory was a strict natural diet. Alternative therapies may not have scientific backing but some of them have documented benefits.

We are all adults here at the end of the day and we need to respect the beliefs of others even if you don’t agree. This forum is for discussion and debate but not to attack other users. You might not agree with candida theories but googling ‘candida hormones studies’ brings up things like ncbi.nlm.nih.gov/pmc/articles/PMC97188/ and there are various sources on the net that say steroids and immune suppressing drugs increase the risk of candida. The point i am trying to make is that peoples ideas might sound crazy but there is science behind most of it but that’s not to say this is causing the problem. There is one user on here that got rid of the symptoms and they came back after two years as soon as they started taking dexa or something similar.

I am grateful for the research going in to this and I truly hope there are some results from the studies. I do however believe, like other users on here, we should leave no stone unturned. Lets just say for example it turns out that every user has down-regulated ARs…what is to say this isn’t being caused by something else in the body that has already been struck off because ‘it’s 100% wrong’.

Hormones are the causes or at least the trigger for these issues and if you asked any person on the street what they think will fix the problems they will surely say hormones will fix it. This isn’t the case. People who are taking hCG and treating this hormonally are not being attacked even though we have many experiences to show this route isn’t working, how is this any different? This is a users experience and they are saying what is working for them, this has certainly proved useful for people considering TRT has it not? I think any information is valuable.

My two c…I would like to hear more about how the OP is progressing and not listening to the same arguments i’ve found in every other post. I am new to this forum but I have been following it with interest and it just seems like people are being pushed away for reporting their improvements.

Please do not take this is an attack…I hope we all one day get rid of these god awful symptoms! Let’s unite and test not divide and segregate!

#82

Jeff, you’re 100% wrong.

#83

I agree with jeff. Science is not a religion there should be room for debate.

#84

Jeff, hormones are being affected because of receptor issues, the signaling, the transmitting etc

#85

lol this did make me chuckle…but seriously we are going through hell…can we at least chill with the battering!
It would be quite nice to have a world where sufferers can share knowledge and out there ideas without being criticized. I kinda get the feeling you are trying to antogonize!

#86

sorry for the double post but…

I am open to this idea completely and yeah some of the arguments are convincing and have science behind them. I do however also believe for me that this isn’t the case and I will try and explain why…let me first say that hormones are vital in the maintenance of certain tissues and the reason I am in this mess. Anyway, I do not have any hormonal profile issues, my hormones are in good shape and my HTPA axis is in perfect working order. This means that for me the androgen receptors and neurons in the hypothalamus and pituitary glands are doing their job in producing their respective hormones.
I do however assume that the neurons in the brain were not damaged since the neurons in the grey matter for producing and detecting hormones were not affected. I do believe this is related to the CNS/PNS though - why this is I can only begin to speculate. This happened overnight and therefore I dont think this is nerve damage per se and I do not understand how hormones could damage the neurons in such a short time frame if it is. The thing that gets me is I can’t understand why this ‘AR down-regulation’ would be limited to certain body tissues and not in others? If this was the case then surely I would have all the symptoms of low androgen levels? Why would my facial hair androgen receptors upregulate again but not in my penis???

Androgens in men have a drastic effect on sexual function, which includes pudendal nerve signalling, prostate, penile maintenance and pelvic floor muscles. They also have an affect on neurotransmitters and the immune system. I think you can agree that testosterone, or more specifically DHT, maintains the penile tissues…this has scientific backing and it is easy to understand why, I do not however have corporal fibrosis…which many people could conclude from ‘science’.

There are a few things I know for sure:

  1. This started on ceasing the drug when hormones shifted
  2. I do not have peyronies
  3. I do not have fibrosis
  4. I have a hypertonic corpus cavernosum
  5. I have very little feeling in my penis (if any)
  6. I get relief sometimes when I need to urinate
  7. I get relief when I lay down for long periods
  8. I do not have hard flaccid(or whatever you want to name it) when I take alpha blockers
  9. I was masturbating LOTS before this happened and with symptoms of tight pelvic floor muscles
  10. I suffered from Prem Ej before this happened to me (no where near what it is now though!)
  11. I used to have a big and lively penis and it only shows itself now and again
  12. My libido fluctuates depending on my mood
  13. I have horrible spider veins on my …
  14. It is shrunken up and hard 99% of the time.
  15. This post is for the OP and I am being a hypocrite by derailing it again!

From everything I’ve read on this forum it seems that the only people who improve are the ones that persevere and take a holistic approach. Diet is one of the most important aspects of health and most of these healthy diets share common ground, cover aspects of inflammation, vital nutrients, anti candida etc. Exercise is also another important one…affecting almost every system in the body. If we all took a holistic approach I am sure that we would all make more progress. Take a look at Chi for an example for this…he has taken a natural approach and has nearly completely recovered by using natural means. I just urge everyone to keep an open mind because after all…whats the harm?

#87

Point is guys here arn’t sharing “knowledge”. No one here possess the knowledge it will take to improve this condition. They are sharing misinformation, wild speculation, quakery and flat out nonsense. This means we’ll go another ten years blowing our money on more nonsense therapies and not get any closer to real answers. If guys want to track their progress on their member stories I don’t see a problem with that. But, the theories section should be shut down (as has been suggested) so we can focus on media exposure and funding/participating in research so the guys here can stop embarrassing themselves and this community and stop wasting our time and money.

#88

So for the OP, what’s been the results thus far?

I can update with my results, since I started roughly around the same time as the OP taking small antifungal/anticandida steps for the last few months. I need to make clear that I don’t have much opinion on the leaky gut/candida debate. I just wanted to try something that didn’t require prescription drugs. I tried several protocols for a few weeks at a time, reasoning that I should feel some difference if anything was working

  1. I cut out out all breads, grains, rices, etc. first, then followed up with cutting out high sugar foods/sweets, Apple Cider Vinegar twice a day (around 1 month)

Result: I noticed immediately less stress in my stomach. The burping and bloating for hours after eating and the constant gas lowered. The itchy skin lessened, the muscle twitching lessened as well, but i think neither of these two symptoms completely went away. Basically all other sexual and non-sexual physical sides were still present.

  1. All of #1 plus digestive aids with probiotics (around 1 month)

Result: Digestion wise, I think everything generally got better. I also felt less of the constant discomfort i would feel in the prostate area…not sure at all how that is related to digestion but i did feel that. I think sleep was a little better too.

In the end I cut out the digestive aids with probiotics. First of all, they were not cheap. Second, I felt like it wasn’t really a cure, just a crutch to relieve some of the symptoms. I wanted to keep investigating to see if there was anything else that would help me

  1. All of #1 plus candida clear (around 1 month)

Result: Not much difference digestion wise. Things were generally the same as before, which still meant my indigestion symptoms were much better than before. Sleep was back to being not so good/deep. During this time I experienced a mini recovery for a few days, not a full blown recovery, but just mini. My testicles had grown in size, there was more girth to my penis, and I masturbated a lot more. It went away after a few days, but it could have just been natural, i seem to have a pretty decent temporary recovery every 6-7 months on my own, so who knows? The feeling of prostate support was gone, i was back to feeling some occasional discomfort down there. One important thing to note, by this time i was eating a lot of veggies and some fruits which i tried to keep low sugar…my bowel movements were SUPER dry. I was going every day, but no matter how much fiber i ate, it was like i was passing a rock every time. When i would wipe, there would literally be nothing on the paper every time. It was pretty uncomfortable.

  1. Started a fully anti-candida diet including the 7 day all vegetable, fiber, liver flush cleanse

This was pretty uncomfortable to do. My sleep was bad during this time, i was constantly hungry and unhappy. I had pretty much zero libido, and I remember experiencing one day with what I have always guessed were high estrogen symptoms (overall “doughy” feeling to the body, over emotional).

After 7 days I stopped this and started the anti candida diet with antifungals and probiotics again, which meant I went back to eating brown rice, quinoa, buckwheat but still not eating fruits at all. My bowel movements have gotten easier and now i do see something on the toilet paper after i wipe.

Result: I can say that my twitching is almost completely gone, the itchy skin has lessened compared to months ago, there almost no indigestion sides anymore…but again, all of the other symptoms are still there including all sexual symptoms. Overall, my body does feel “cleaner”, but so far there has been no translation of this effect to any of the other symptoms of PFS

Conclusion and next steps: I now don’t believe treating this from a digestion angle is going to SOLVE anything for me, but it does make me a little more comfortable as far as digestion. I’m not sure if I will eventually drop the antifungal diet altogether as it does make me feel somewhat better. For now I will continue this for another month or so. I also don’t have access to mass amounts of nystatin or the chinese herbs that IHP had, so maybe those two things were huge parts of his ultimate recovery. I don’t feel like investigating that degree of money into this, and would instead choose to put that large a sum of money either to PFS research or just saving it.