Too kind @Bruce, but I’ll take it. 
First beer is on me if we ever meet up.
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I already did go down the route of self experimentation, and made some improvements. I believe if I did not take that initiative, I would have degenerated to the point of no return, since I was already rapidly declining. I knew no one other than myself was going to help me. I wanted to start living my life again as soon as possible, so what was I going to do, wait for the magic pill to come out in the next century? Ultimately I had to risk getting worse in order to get better. I believe people who say they’ve tried everything did not actually do so, because there are countless combinations of things to implement in one’s life. And for some people they just need to find the right protocol which could be extremely specific, and adhere to it for a significant amount of time, not just a few weeks or a few months. Also, just because I decided to go this route doesn’t mean I don’t support what everyone is doing. All I am saying is that if people want to start living life again as soon as possible, they need to act immediately, be willing to take risks, and stay determined. For everyone waiting for an “official” FDA-approved treatment, let’s just say that might take a while. I appreciate what you and every forum member, PFS Foundation, PFS Network, and all the researchers working on this problem are doing. Hopefully someone can come up with a solution in the near future.
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…Likelihood is. large portion committed suicide and finally escaped this Hell…”
@JimWildman @mstone @LazarusRy we are some of the old men of this forum. Thinking that there have been so very much more unknown and uncounted finasteride caused suicides as documented.
And this means not to give up. No it means to enforce the fight against the almighty pharma machine!!!
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funding useless studies
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big pharma creating drugs for us
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10 years till solution
i got some questions here:
who mentioned anything about big pharma helping us?
who said our only route to the finish line would take 10 years?
if we want a solution that works 80%+ of the time for all victims including the highly sensitives ones that keep crashing every other week, what do you suggest besides funding studies?
confused here, wanted you to expand on these points. thanks
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This forum is all about science now, so please don’t encourage broscience of “herbs and deadlifts will cure u completely” anymore which has already been discussed for 2 decades in this forum. I agree a healthy lifestyle can definitely help u to fight this disease but can never “cure” a severely damaged patient. I think u guys want to stretch this broscience for another century, i thought u people had a separate forum for that !!
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I don’t understand what you mean exactly?
Good job for using a strawman fallacy against me. I never made such an inane statement as “herbs and deadlifts will cure u completely”. I already concluded all my arguments toward Greek in my last post, why don’t you read that and then formulate a coherent response. I am not going to repeat myself to another person. And I don’t know why you’re quoting the word “cure” since I never used that word once. No one here is saying there is a cure, I am merely suggesting improvements can be made.
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im asking him questions to clariffy on his points
Ah, ok!
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What did u mean by “protocol” then !!
We certainly aren’t lazy asses to not try those protocols, it’s just that some of us are damaged to the core where it gets impossible to even walk without losing balance, to ingest food through the foodpipe without getting chokedup. The only answer for this is science… well and good if u are able to do those protocols but it’s not same for everyone, try to fathom the level of our severity.
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All you guys who are in it for the long haul, waiting for an actual treatment i.e. a prescription medicine, to treat us, it will require PFS to be a formally recognized clinical disease, which will take quite a while, research to be done on patients (takes even longer), research, development, and production of a novel treatment (takes years) and FDA approval (takes even more years). Who is going to produce this hypothetical drug? A pharmaceutical manufacturer. As much as you would hate to admit it, we will need Big Pharma to do that for us. We aren’t going to create a drug manufacturing organization ourselves. 10 years – just a guess as to how long it will take. Probably longer. Either way, it’s not going to happen anytime soon.
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Protocol can mean a number of things. Herbs and Exercise are only two steps toward improving overall health. Sometimes herbal supplements will help, sometimes not. There is a higher chance of side effects from herbs. The other supplements that are more important than herbs are vitamin and minerals (Vitamin A, B1-12, C, D, E, selenium, zinc, iodine, boron, iron, magnesium etc.). If you are nutritionally deficient it will make everything worse. Many people are avoiding Vitamin D and Zinc, and I think that is a mistake. You need to have blood tests done to check for deficiencies and other underlying conditions. Everybody knows that it is beneficial to improve their diet, exercise, and get adequate sleep. I understand that those who are suffering severely disregard these things because they think how can that possibly make a difference? But I assure you, everything matters. Find an exercise regimen that is well-rounded and includes high intensity cardio as well as strength training. Do as much as you can handle. If you don’t want to try herbs yet in fear of getting worse, then just take some things that are not herbal. CoQ-10, NAC, L-Tyrosine, and L-Arginine may help. If you are eventually diagnosed with another underlying medical condition, taking medication for that may possibly help. I know this is not true for everyone, but if somebody decides to try (Yellow or Black) Maca for example, depending on how much you take, when you take it, how long you take it, and how much you increase and taper the dosage, it might have different effects. All of these things can be part of a “protocol”. The important aspect of this is to focus on everything that is involved in improving your health. Whether that is something that appears irrelevant, such as sleeping in a completely dark room with no lights, or being prescribed medication for another illness, everything makes a difference. There is no chance that your body will be able to repair itself if you don’t give it the materials and environment for it to do so.
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The majority of people on this forum don’t really have a choice other than to hope for studies. I know I’ve tried all sorts of hormones/supplements/drugs etc. I’ve gone way further than the usual tribulus or vitamin D nonsense and at the end I realized that I’m just too far gone.
What do you expect people like me to do? The studies keep people like me alive and kicking. If the pfs network wasn’t doing what they’re doing right now I would have zero hope.
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I believe that taking drugs is absolutely dangerous. They all cause epigenetic damage almost by definition IMO. I do agree with you that supplements are no cure. We would have found it by now.
However, all living cell on this planet, dating back to the first cyanobacteria, have the ability to produce sirtuin proteins to modify the epigenome and adapt it to the current environment. If the environment doesn’t change, those sirtuin will act as if all is good. If the environment has changed in a way that no longer requires the previous epigenetic modifications, those sirtuin proteins would most likely, IMO, change the epigenome to reflect this new environment.
That’s my approach, by diet and exercise which according to the Center for Disease Control (CDC) " your environment and behaviors , such as diet and exercise , can result in epigenetic changes,". I added optimism and fixing traumas because it is my understanding that those are causing diseases. Don’t hit me on this, I’m the first to admit I may be wrong on this. I cannot prove it and neither can anyone prove I’m wrong.
I crashed 3 years and seven months ago. I believe I’m within a few years of being recovered. I’ve been on a ketogenic / carnivore diet for 3 years and 5 months (that’s what commitment looks like) and I got most of my neurological symptoms lifted after 4 days, the vast majority of other symptoms lifted in the following years. Do you believe it’s a coincidence? 4 days? Or maybe you’re not saying it but “I’m different” I didn’t really have pfs ?
Another user is doing the diet and got most of his symptoms relieved within a few days. He was stuck with them for 4 years Coincidence? What should I do? I mount a double blind placebo test with 100 participant on each side? It’s beyond my ability.
But let’s put all of that aside. What you call realistic, I call fatalistic which by definition means “there’s nothing you can do, just accept your fate”:
That’s a quote from your letter. You wrote that. Do you deny having written that?
This thread is about being fatalistic (or pessimistic) or optimistic. It’s about being pro-active of idle.
It’s not about realism, reality is elusive to all of us.
That being said and as an old mentor said to me: “who am I to deprive you (Ozeph) of your misery if that’s how you see things. Maybe you have something to learn from it ?”.
I had a friend to whom I was saying “who risks nothing gets nothing” (from a French expression, you English people have a different version). He took it as who risks nothing doesn’t get bad outcome, which is your position.
36 years later, He’s hauling 30kg rolls of rubber on a night shift in a factory and he’s got less than 10k under his name.
36 years later, I own 4 businesses in 4 different countries and I won’t disclose how much I have under my name. Sure, I got through many crashes (2 bankruptcies and 2 divorces) but in the end I got results. Maybe I got lucky again and others are shipwrecks, but I never gave up when things got tough.
I’m thinking of opening a ketogenic / carnivore diet center with psychologists and other “trauma healers”. I will do this on my money and charge only the bare minimum to cover expenses (food and electricity, maybe a few salaries,) I won’t take any profits and may even take a loss if my other endeavors are profiting.
Ironically, even if I did get a 60% success rate or better, I couldn’t post on this site which is fine, I have better ways of promoting a clinic. But if I was to find a way to improve our condition, this site would deny it to it’s users.
I haven’t done this diet center yet because it would only work if people have faith that they can improve. I need to see that amber still burning before I can add fuel and blow on it to make a fire out of it.
You’re right; there are other sites on which people are optimistic and pro-active. I’m staying on this one because it is in the greatest darkness that light in needed the most.
This thread is generating passion in people because it’s about core beliefs. Beliefs are of the realm of religions. I won’t change your beliefs, you have the right to have them and I actually support people acting according to their beliefs. But I also suggest to people to challenge their beliefs from time to time, to see if they are still valid.
It is my core belief that there is hope. My message is for those who are still uncertain which way they will lean. I’m trying to counter balance fatalism with hope.
So for those who haven’t made up their mind yet, I’ll say don’t give up, there is hope. But don’t try dangerous drugs and products. Stay natural and chances are it will either do nothing or improve your condition.
That’s my belief. You all can have yours and I’m fine with that.
As always, I wish you all the best.
Ozeph
@Toughluck24 Do what you think is best for you. Get your hope where you can get some. Just don’t give up.
I personally am just countering the core argument that we should do nothing and wait, that “Nobody is coming to save you and you cannot directly save yourself”. That’s a blanket statement and is not true for everyone. It’s the equivalent of me saying “do this diet and you will improve” I can’t say that either, it won’t apply to everyone. I believe people should at least try, but my beliefs are not better than anyone else’s.
I agree that some lucky people will be able to recover but we need treatment that works for everyone. That sort of treatment will never come through self-experimentation.
We also need pfs to be recognized as a real condition and that can only be accomplished through studies and science.
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Have you tried a zero carbs, high fat, medium protein diet for a prolonged period of time ?
I not suggesting you do, I’m just asking, like a census.
No I haven’t. Hard drugs like GHB have zero effect on me. How is a zero carb diet going to do anything when my brain doesn’t even respond to any sort of hormone or drug?
As has been addressed elsewhere, there will most likely never be a novel treatment for PFS. The economics just do not make sense, not to mention the likely mechanisms involved can’t be treated through conventional medicine.
It’s more likely a treatment or cure would be adapted from other technologies, such as molecular medicines like CRISPR.
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i dont remember any of the mods ever mentioning prescription medicine as a goal
i do vaguely remember them saying all options are being considered, including geographies with friendly regulatory environments, and private studies to accelerate developments (like what we’re doing now), etc
can you please prove that we have zero options to develop treatments asides from the ones you listed?
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