20 days is a lot, dont go this high, not neccessarily a good idea. I learned the hard way that prolonged two digit waterfasting is counterproductive… its better to stay safe and not risk
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Wow. That’s great ! Please keep us informed of the changes you notice.
Be careful with the gelatin. I tolerated it well, and bone broth as well, but a few months ago I crashed on collagen peptide which is the most available collagen of all 3, bone broth being the mildest and gelatin in the middle (although it depends on the dose. I was taking 10 to 20 gr of gelatin a day and was fine).
No, unfortunately I’m not out of pfs. I still wake up after 4 hours of sleep and toss around the rest of the night although I do have light sleep and REM sleep during that second half. Some nights are better. Two days ago I had 6 hours before waking up and tossing around. I feel rested 90% of the days, 10 % are more challenging days where I have to push to do my work and activities.
When I first crashed, even with benzodiazepine before bedtime, it looked more like 2 hours of sleep, then I would be wide awake, toss around and would drift for 6 hours between barely sleeping, half awake half dreaming and being totally awake. I would get up not feeling rested and would have a messed up day where doing anything was a struggle. I would feel tired all the time but couldn’t nap.
So sleep has improved but I’m not there yet. I will fast again and continue the diet until I can sleep good with no meds. Insomnia is my last annoying symptom. But as you can see, it’s the typical sleep disturbances of the people with pfs that get insomnia.
Other mild, not annoying symptoms are dry lips after brushing my teeth, lasting half an hour. Before they would burn all day all night. And burning eyes once in a while when I shower. It doesn’t last. Before, I would get it during the day, especially on hot days when o the motorbike, and I had to stop and wash my eyes at a gas station. I could barely see and drive.
Sex drive is average to high for my age, with desire for sex 2-3 times a week and looking up girls on the street. It’s at least 3 times less than 6 years ago but I was 45 and I’m 51 now so it’s probably due to both age and pfs. No problem with erections or sensitivity. In fact, sensitivity is better than pre-crash and sometimes better than pre-fin. It varies.
I definitely had lots of progress and they seem to stick.
At this point, I believe there is great potential in BHB. I will try to be in ketosis as much and as often as I can. I believe, although I’m not certain, that it can repairs some of the DNA damage done by pfs. I am certain that it at least prevent further damage in some types of epigenetic changes to the DNA although I’m not sure it applies to pfs damage. This is according to what I read on the subject.
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I have about 12% body fat at the moment. At 6%, you see all the veins through the skin and only a few body builder achieve that. It would take me 15 days to go from 12% to 6%. Past 5-7 days, I would start eating up my muscular mass as well (the body builders at 6% body fat eat lots of protein but no fat no carbs. They’re not fasting).
At 20 days, I would have lost 2/3 of my fat (4% body fat) and maybe 20-25% of my muscle. I would be at risk of ketoacidosis which could cause me to pass out suddenly or die. It would leave permanent or long term damage to my body. That should only be attempted under constant medical supervision unless you do want to die.
In my opinion, it would be more beneficial for you to not go over 5 days so as to not lose muscle mass and end up weaker, and do it more often (like every month). Also, you can either do intermittent fasting in between, eating only in a 4 hour window everyday, or better yet be on a carnivore / ketogenic diet while not fasting. (I prefer Carnivore to ketogenic, which has too much plants for pfs people imo) so you would have BHB in you blood 24/7.
An unsupervised 20 day fast is reckless, bordering suicidal in my opinion. It’s better to do it within the healthy limits and be constant and disciplined about it.
On my side, I will start a 3-5 days waterfast (with black coffee in the morning) on Saturday morning.
I intent to do some light cardio and weight lifting during the fast to prevent muscle mass loss. Maybe I’ll go swimming as it’s a complete exercise.
We can do it together and share some feedback on it ? What do you think ?
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Welcome to Hell.
Never exuberant, smiling, or talkative, it’s your fault for not taking antidepressants that don’t work, make you feel strange, and make sexual symptoms much worse.
Extremely fatigued and look tired all day even though you get to bed plenty early? Must be lazy or on street drugs!
Memory fried and you forget birthdays, names, phone numbers, important obligations and events that were planned? You must not care to think about anyone but yourself!
Everything these shit drugs did to us is our faults somehow. Only people with a diagnosis get to act sick, I guess.
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Thanks for your concern. Of course I will evaluate after the 3, 5 and the potential 10 day fast if it is a good idea for me to go higher. I have a scale that enables me to monitor fat and muscle mass every day. Realistically there is a very high chance, that I will never attempt the 20 days…
In my German book about the ketogenic diet is a graphic about the level of bhb after certain days of fasting. It shows, that bhb reaches its highest level only after 30 days of fasting. If our theory is correct and bhb is the reason for reversing pfs, that is an I interesting fact for me. Every day longer fasting exposes you to even higher doses of bhb (up to 30 days).
Btw, I have done 3, 5 and 10 day fasts before…
Sure! Let’s share feedback. I start my 3 day fast tomorrow morning. I like the idea of swimming, maybe I will incorporate that.
Did this person share the protocol ? Was is ketogenic diet or exogenous BHB ?
That’s assuming high doses do a better job and it may. It could also be that the body uses BHB as it see fit, at its own pace, to repair damage. In that case, constantly having some BHB available would be better than sporadic high doses of it. There is no doubt the body guides the use of BHB to alter epigenetic modifications in my opinion. If BHB would just chemically attack all of them, it would take out the good ones as well and they far out number the bad ones. Without those epigenetic binders, I think we would die an ugly death. Like the artificial mutant melting down in the X-Man movie.
I’m speculating, I don’t have answers. But for myself, considering I worked hard to get some muscle and putting on weight is difficult on my diet, I will avoid long fasting, stay in ketosis between fast and fast as often as I can get the lost weight back in between fasts.
It seems to work, I’ve done lots of progress in the past year.
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That’s exactly how I’m feeling and boy does frustration set in.
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It took 5 years for my wife to admit my disease was not only in my head, as I had increasing symptoms 5 years pre-crash. After I crashed, when I couldn’t walk or articulate a sentence correctly, she started to believe me. Sometimes people are just stupid.
But hey ! That the way things are so better deal with it.
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Do you think you could approach them, if they’d prefer to remain anonymous, and ask for protocol details/brands/dosages and recovery timescale?
Every recovery of course is so precious and so encouraging. Hopefully they’ll be ok doing so.
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Same strategy for me: Ketogenic diet with fasts in between. Throwing as much bhb at my genes as possible 
Of course, need to see if I get to thin. But right now I am still at around 15% bodyfat and my body somehow totally resisted getting lower.
Being in ketosis is a natural state, so bhb should only switch epigenetic markers that “are not right”. And surely silenced androgen receptors are “not right”…
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Exogenous, im planning to do them together ;D
Yes, that’s my theory at the moment. Babies are born in ketosis. Although the body saw fit to silence the AR when we got a sudden rush of DHT after not inhibiting the 5-ar. Hopefully, with time, the 5-ar/DHT - Androgen Receptors axis is becoming more balanced and we’ve got the BHB to help the body unsilenced the AR.
I read somewhere the BHB acts along with Butyrate because they are similar molecules. Butyrate can be found in butter, cheese and ghee, but is produced in large quantity by the guts bacteria breaking down fibers. Too bad my diet doesn’t have much fiberd. Things with fibers usually have edible carbs as fiber itself is a carbs. I’ll try to find a fiber with no edible carbs I could add to my coffee in the morning.
Good idea. Although having both BHB salts and BHB esters at home, I find them hard to fit in my diet. They’re not easy on my stomach.
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I’m having my last light meal in the next hour: dried beef jerky I made, ghee and water, then I’ll only drink black coffee in the morning, some electrolytes and of course water.
By the way I found a way to increase Butyrate without increasing carbs: chia seeds. They’re 40% fiber and the rest is mostly oil and protein. 18% is omega 3. Does anyone knows if they’re ecxitatory, promotes glutamate or 5-ari ? They’re good, but should be limited to 1 oz a day, before being pre-soaked.
Fibers gets eaten by the guts flora which creates Butyrate out of it (among other things). Butyrate has the same effect as Beta-HydroxyButyrate on the DNA. If BHB helps, getting more butyrate would help as well.
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You should make a video in the video section about your progress. Sounds inspiring.
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I’ve been PM with someone and I think what I wrote would be of interest to all and fits into this success story thread… So I’ll repost it here:
Here’s the list of symptoms I had after I crashed. I didn’t have that all at once, but I had it all of it at some point.
Neurological: Total insomnia or waking up after 2-3 hours of sleep, severe anxiety to die for, brain fog, speech slur, depression, demotivation, lack of confidence, anhedonia, irritability, aggressiveness, difficulty focusing and solving problems
Physical: Fatigue all the time, couldn’t stand up for long, had to rest when climbing stairs, couldn’t do hard physical activities, dizziness, loss of balance, stomach ache, gastric reflux so bad I had to lie down at an angle, food stays in stomach, headaches all days, burning eyes, burning lips all the time, muscle waste, lack of coordination
Sexual: Balls hurting all the time, low to no sex drive, no morning erections, difficult erections with stimulation, greatly decreased sensitivity sometime none at all, couldn’t finish when having sex
Here’s what I did that helped me the most:
I cut all carbs (less than 8 gr. a day), barely eat any plants, only a few leafy greens in low quantities, some coconut milk and coffee and I basically feed myself on beef and ghee (clarified butter). I don’t deprive myself. I eat until I’m full. I get most of my calories from ghee, beef fat and MCT oil from coconut. At first, I did lots of intermittent fasting (eating in a 6 or 4 hour window) but I don’t do it anymore. Instead, I do a 3-4 days fast every 2 months.
By doing this, not only I get a lot of Butyrate from the ghee, but I’m in ketosis which means my body produces Beta-HydroxyButyrate from my body fat. My standing theory at this point, although I can’t be certain, is that both Butyrate and BHB helps repair epigenetic damage. I’ve read scientific articles that hint at that but I don’t know for sure if it works for us. Nonetheless, I am definitely much better now after more than 13 months of this diet. I mean, my only remaining symptom is insomnia and a few other very mild things I barely notice.
Also, this diet greatly reduces all inflammation in the body. I feel so much better overall than I did pre-fin.
No alcohol, no drugs, no cheating. Recovering is serious business so it takes what it takes.
I take a lot of supplement: Ozeph Regimen and Supplement
Look at the last list down the page as I’ve changed it a few times.
Honestly, all those supplements have helped more at the beginning than they do now. I can now skip them but I prefer not too. It’s mostly vitamins, minerals and amino acids. Anyone should be careful and test them in low doses before going full on as I do. The diet is not dangerous, the supplements can be.
But it’s still the diet that helped the most. After 4 months I’ve regained enough strength to start exercising. So I started doing some cardio and weight lifting, which I’m still doing to this day. This also helps a lot but of course you need the energy first and that’s what the diet gave me.
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The results were as follow:
Most neurological symptoms except insomnia went away within a week or were greatly diminished. Headaches disappeared and didn’t come back since I’m on this diet, digestion problems went away within 2 weeks.
After 2 months, energy came back, neurological sides were gone or mild except insomnia, most physical symptoms disappeared, burning eyes, and burning lips were less severe. Sexual sides improved 30% but my balls were still hurting.
After 4 months all symptoms further improved as I started exercising, taking amino acid, vitamins and mineral supplements. Sexual symptoms improved to 60%, my balls were still hurting but less.
After 6 months, sexual symptom were coming and going. I could cheat and eat carbs (in limited qty) and I wouldn’t get anxiety. My balls were hurting a lot less and less often.
After 9 months, my balls stopped hurting. all neurological symptoms were gone except insomnia., sex was at 90%.
After 13 months of diet and 2 fasts, I can eat limited carbs, not everyday, without ill effects. The only symptoms remaining is insomnia, although it greatly improved, some dry lips but it’s mild and sometimes, for a short time my eyes would burn (like a minute or two). Sexual sides are all gone, sensitivity is back, sex drive is not as high but since I’m really looking at the girls on the street, I think it’s because while I lost 20 kilos, my wife gained 20. Being fit and eating healthy, and seeing her stuff herself with carbs and eat 3000 calories a day while working in front of a computer, I think my lower sex drive just applies to her. Lol.
I remain sensitive to some food as it can disrupt my sleep. But I think you can see the improvements
look like an upward curve. I believe if I continue this path, the remaining symptoms will disappear within a year or two although I have no proof of that nor I have any proof that they won’t come back if I stop the diet, exercise and supplement. But I have good hope.
I just learned yesterday that by feeding rats once every two days, they increased their lifespan by 83%. That’s a whooping amount ! A human that started this at 20 could live to a 165 years if it applies to us as well. I think I will diet, fast regularly and maybe do intermittent fasting and eat once every two days.
If there’s something I learned from this disease and the diet that I took, is that I don’t have to be old and sick from 60 to 90 and then die. I can be just as fit as in my 30 until at least 70 and in good fitness until 90-100. I’m 51, so this more than doubles the time I have left with a fit mind and body while having experience and money. It looks like the best years of my life are ahead of me ! Life is looking a lot brighter !
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I can say that this is what helped me as well. I noticed at first that after eating meat I was feeling better my balls where normal looking and I had meat diet for 3-4 months I think. when I would cheat and eat greens I would lose my advances after meal or two. last week I came off of the meat diet and I incorporated vegetables cooked. I feel good my improvements stayed and I am feeling better overall. getting off of diet was not good I felt weak and I lost 2 pounts in a week but I am stabilized I don feel weak now.
@Ozeph I was thinking that meat diet would increase my cholesterol that is why I wanted to get off the diet. have you done blood tests what is your cholesterol now? did it increase?
Thank you.
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Well, I’m glad to hear others having good results on a similar diet.
Yes I did. HDL is higher, LDL also somewhat, but the ratio is much healthier. Altogether it’s not an issue for me. I’m at 12% body fat, have lost all visceral fat and I’m much healthier. Heart rate has gone down.
I should try eating meat only. I’ve been eating around 300 gr of leafy greens but I don’t really have a reason why I do. Mainly because it absorbs the ghee and I don’t have to drink it off my plate when I finish the meat ! Lol.
Thanks for sharing !
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