A letter to you, forum

General Discussion
#263

I have absolutely no problem with patients doing both, for the record. I just hope patients understand the inherent danger involved.

However, there does seem to be a prevalent attitude with many patients who self-experiment, which is “why bother funding research, it’s too hard, won’t do anything for me, and you just need to try harder with self experimentation”. It’s obviously then a self-fulfilling prophecy that science won’t do anything for them, because far too many people will participate in the effort to progress it. Not too mention it creates a survivorship bias within the community.

It’s certainly not every patient though and I acknowledge there are many reasonable people who are desperate, which makes their attempts understandable.

We as a group have maintained that doing both are possible and don’t begrudge any individual who does so.

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#264

Well that’s easy to answer. Ketone bodies (produced by a ketogenic diet) use different pathways than glucose when burned by the mitochondria, the cell’s engine. They use 5 times less NAD+ and NAD+ helps repair the epigenome.
Ketones are particularly good as a fuel source for the brain. It brings “mind clarity” according to testimonies. I wouldn’t know, I went from brain fog for 2-3 months to what appeared to be normal. That could account for a 4 days radical improvement IMHO.

First article that popped up… There’s hundreds of them, it’s not a secret.
Aging is due to accumulated epigenetic damage… Our disease is an epigenetic disorder similar to aging and with some common symptoms, from my point of view.

Being ketogenic and in ketosis is a completely different way to metabolize energy and changes the body quite radically. Babies are born in ketosis. So it’s not like our body isn’t made for it, it’s just that for less than 12000 years, we’ve been using carbs as a main source of energy. The previous 200 000 or 300 000 years, we used meat and fat.

And by the way, I may very well have survivor bias. Nobody is objective as far as I can tell. I’m just glad my aging marker are reversing course and I can look forward to hiking in the mountain at 80yo.

Thank you for your answer, I wish you the most improvements you can get.

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#266

For the record I had my 1st crash in 2000. I wasn’t aware of pfs and tried many if not all of what been suggested in this thread. Early days the majority of things did help. However I continued to take fin on and off because the connection was never made. As I became more severe I revisited the said protocols while still unaware of pfs and they no longer did anything to help. Out of desperation I tried the majority of things again after fully stopping fin and they not only didn’t work they made me worse and I developed even more permanent symptoms. To me this suggests that they don’t work when there’s a lot of damage to the underlying mechanisms needed for these to work. I.e the greater the gene expression the bigger the risk. Almost everyone who has a crash sufferers the same level of profound fallout but not necessarily the same amount of damage. Turning the clock back I’d probably have been OK if I’d made the connection years ago. Repeated use of 5ars tends to be the key in those that don’t respond/get worse with self experimentation BUT not always! Generally guys are trying to help each other on here whether thats by offering up supp/diet suggestions and alternatively to warn of their dangers one thing is for sure time with light exercise (if u can do it) are the only 100% risk free current approaches that can fit every shoe size. Let’s not get into a bun fight This is a place of support where we should respect each others views but people need to be able to make an informed choice about what they do. Supporting the scientific push no matter how long it takes is something that will benefit everyone and will one day help future sufferers

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#267

You were early. The drug came out in 1998 if I remember correctly.

I started taking it some time after you crashed until 2018. In 2011, I stopped for a couple of months, was Ok, but my hair started falling so I took it again. I then developed many strong symptoms while still taking it and they got worst when I stopped in 2018.

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#268

Yeh I know u were a long time hitter. I had numerous times off often for three months at a time… I was off it for over a year in 2009 when trying for kids each time I restarted anxiety exploded as well as other things. I didn’t have a clue what was happening to me. I tried your recommended diet as you know recently but it made me worse unfortunately so I had to stop. I do recognise for some it can help. I’m sticking with fasting, cold water therapy and time. They seem to be my best friend’s.

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#269

Thanks for your response. It helps with my survey.

It’s not easy to pinpoint. I knew something was poisoning me. I even had a root canal tooth removed for fear of mercury poisoning. I didn’t check on fin because my doctor told me it was ABSOLUTELY safe. This is also why I don’t have much trust in doctors and scientists.

The diet is just to make the body pre-disposed to repairs. It’s actually the Tricks to repair the Epigenome that does the work.

Cold showers and fasting, along with time is part of that. You’ve probably seen that link before. It has more easy natural things, like hot saunas, doing cardio to get out of breath and having a very regular schedule to make sure the body’s circadian rhythm is constant.

Ok. I get the point. There’s no one size fit all here. Nonetheless, I still believe in being pro-active and doing natural, non-intrusive actions to try an improve. I’m restless. I can’t stay idle.

To everyone its own way.

I wish you the best my friend !

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#270

Same to you @Ozeph and thanks again. You could easily vacate here given where you are but you hang around to help others :heart:

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#271

I’m not trying to prove anything in regards to the hypothetical treatment everyone is desperate for. You want help from the medical industry, drug manufacturers, and other research companies, expect it to come in a pill form, like most things do. Does it matter whether it is a capsule, CRISPR technology, or an injection? Either way, it is not within reach at the moment, nobody has the slightest clue as to what kind of substance it will turn out to be. We don’t really have a say in whether it comes in another damn pill or not, because we are going to take whatever we can get. We don’t have any “options” to develop the treatment to begin with, because we aren’t the ones making it, we are simply providing research and hoping the rest of the world will help us. Where does the PFS-Foundation manufacturing facility reside exactly?

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#272

you come in here saying we only have the option and route to the finish line that you claim to know about and whatever the foundation and network is doing is doomed to eternity

do you know what the burden of proof is by any chance?

#273

Hope is the most precious resource people have here. It saves lives.

You can have your opinion, but if you really want to help, please don’t argue against people’s hope.

All the best to you !

Ozeph

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#274

Esse I never understand you, aozeph.
I appreciate your help and I am the one with no will to do all of that. Maybe because I saw many doing this things and never saw anyone really improved

The thing I don’t get is that you sometimes say you have a good libido, next day you are all cured apart from sexual sides. Kinda frustrating

#275

You must be mistaking. My libido is around 5 times a week, sometimes more, sometimes less and overall less than before but still ok for a 54yo. I have two healthy friends with lesser libido.

And I never said I’m all cured, I still have to take meds and herbs to sleep. Insomnia has remained.

I believe I’ll be next to normal in a few years, there’s slow but constant progress. I’m a believer, I have to be. I made a compilation of success stories and many have come through. I think it shows it’s possible.

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#276

All recoveries you know were within the first 6 months post drug? :frowning:

#277

See posts from @eskimojoe who cites years

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#278

I’m aware of a few where it was years. There’s hope that the bodies systems may just click one day

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#279

I recovered sleep, genital size, most brain fog and no fatigue about four years off.

Never got back muscle or sex drive but could wank regularly and pleasurably.

Then fucking ZMA put me back here.

#280

just saw this as got the email notification, first time here in a long time

im 100pc now, totally back to normal and no need for pills anymore, probably took 4/5 years unfortunately

hang in there everyone, try to stay positive and get on with life, focusing on it does not help

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#281

So you recovered fully? Were you an extreme case?

#282

yes and yes (was impotent for 2 years)

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#283

Did you have crippling anhedonia, muscle wastage? Things like this?