Could the problem still lie within the gut even for someone who has no gut/digestive problems? In that department there are no obvious differences for me to what it was like pre fin. I have sexual sides along with shrinkage and narrowing, i’m struggling to connect that to a gut issue
I’ve heard a lot of talks about guts biome and parasitic infection. At first, I thought it was all the same: the source was epigenetic and the guts biome and/or infections would fix themselves once the epigenome would be fixed.
But after reading the story of this man who got cured by treating parasitic infection, not by doing the things that are said to fix the epigenome, I’m starting to wonder if after sometime, the epigenetic damage may have fixed itself to some degree but the parasitic infection caused after the crash still remains and gives us some of the symptoms.
If you want to know, check your Immunoglobulin E (IgE). If it’s elevated, your doctor would agree your body is fighting an infection. Then the task would be to find out what’s causing the infection and treat it.
That’s all theory to me but I’ll take the IgE test and have my guts biome analyzed. By the way, my digestion is good and no problem with the guts either, from what I can tell. However, pfs sufferers are often missing the bifidus and e-colie strands of bacteria, which is unusual in mammals (and therefore humans) so I think it’s worth a shot.
In positive you’ve laid this out before, but is there anywhere with a quick summary of how this could possibly be done? What supps, diet, etc?
What I’m doing: Low to zero carbs diet, low to zero fiber.
Best way to do this is to eat a carnivore/ketogenic diet, which have the restriction of both: 70% calories from mostly animal fat (ghee is a good one), 26% calories mostly from animal protein, less than 4% carbs which will have to come from the little plant food I still have.
I get my carbs from 100gr spinach (4.2gr carbs), 25gr lentils (13.3gr carbs) (that’s dry weight, but of course I cook them) and 3 1/2 tbsp of rolled oat (11.5gr carbs), cooked, before bed (to raise insulin, lower cortisol and sleep better). That gets me 29gr of carbs a day, less than the 30gr the brain absolutely needs everyday (the liver can make glucose from protein if there’s zero carbs intake. I tried, I had carbs cravings. It’s tough)
29gr of carbs is also more than 4% of calorie intake so I may want to cut in half the lentils and the oat.
This diet already makes me in ketosis and goes a long way to help repair the epigenome according to what I’ve read. It really helps with the neurological symptoms (like high Glutamate / low GABA imbalance) But it’s not enough. I’m trying to produce sirtuin proteins on top of that and those are the ones that regulate the Methylase enzyme and the Histones along with doing a host of things. The BHB produced by being in ketosis (and contained in Ghee) are synergistic with sirtuin proteins. I have links if you want to bother reading through the stuff. This post is a condensed version.
Those extra tricks are:
- Fasting or intermittent fasting (one meal a day: a big meal)
- Caloric deficit for a few days (on an intermittent fasting and obviously fasting does it as well), but not everyday or on the long run to avoid slowing down the metabolism.
- Cold Showers
- Heat, like Hot saunas, followed by a dip in cold water
- Exercise while glycogen depleted, like during a fast or intermittent fasting. Works best the lower the carbs intake. 10-20gr carbs a day will go to your brain and after not eating for 22 hours you should not have glycogen left, if you’ve been ketogenic for at least a week
- Exercise until running out of breath: sprinting for example.
As you can see, some of those can be combined: a trip to the gym while fasting, exercise, get out of breath, sauna, cold pool etc…
It will likely take years but the good news is while doing this, in my case anyway, all symptoms are gone or greatly diminished and I can live as close a normal life as can be under the circumstances. I’ve had symptoms getting better from day 3 of the diet. At first, I was fast improving and after 2 years and a half, improvements are slower but there are still some.
And as noted above, I will no longer ignore the possibility of a parasitic infection and imbalance in the guts biome and will have this check. I’ve heard too many people talk about this and this later story of what seems like an actual pfs sufferer “curing” himself after 10 years of suffering by treating parasites certainly makes it worth investigating. Is he cured ? I’m not a doctor and tests would need to be done. But he appears to have been symptom free for 18 months after having all the symptoms for 10 years. Still, I’ve heard of people relapsing but… I’d take an 18 month break anytime!
I wish you good luck and offer my assistance if you have a hard time getting on the diet.
All the best to you
Ozeph
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First off I appreciate you posting updates so often on here. Second, I believe somewhere on here you mentioned a friend of yours who saw a Russian Doctor who told him to only eat meat and it would help him. How is he doing?
I’m a big believer that most of our symptoms are related to a disruptive gut system.
In my theory “leaky gut syndrome” could be the main cause for the most symptoms.
This would also make sense that most supplements don’t work effective in the long run.
Many people including myself have achieved a big relieve in symptoms with a diet change like keto, paleo and similiar diets.
Adding probiotics could be truly beneficial especially if you’re deficient in the good bacterias such as lactobacillus, bifidus and e-colie.
I had no news from him. Only the doctor saying to “eat only meat” for epigenetic disease. Eating fat cuts of meat induces mild ketosis and reduces carbs and fiber to zero.It fizes the guts and starves potential pathogenic bacteria infection. (note that a carnivore diet is animal food, salt and water. Nothing else. No spices, coffee or tea: no plant food)
@Marki87 You’re right, I’m looking into this as well. It seems many of us have no bifidus and e-colie strains. I don’t think it’s the cause because the disease coincide with the taking / withdrawal of a medicine but I think it’s a contributing factor. In my experience, what killed the bifidus and e-colie to begin with is still killing them if we supplement with probiotic. Nonetheless, I will have my IgE tested for parasitic infection and at least kill the pathogenic strains. Right now, I’m thinking of starving them by eating less carbs and fibers.
I think the main cause of our symptom is polyglutamine expansion caused by deregulated AR, as displayed in the high glutamate / low GABA imbalance many of us display. It causes oxidative stress and inflammation, both of which are diminished by a ketogenic diet or carnivore diet that reduces carbs.
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I was taken antibiotic for my acne after 3rd month I quit off drug a few days later I was cured sexually! But when I stop antibiotic the disease come back. I tried one more but antibiotic didn’t work same, so what’s behind this?
Antibiotic resistance perhaps?
Other people have reported that. One explanation I’ve read was that the antibiotics killed pathogen bacteria in the guts, and then they came back after stopping the antibiotics.
Could also be that the antibiotics themselves are having an effect on the body’s chemistry.
To me, there’s no doubt the initial cause of my pfs is fin. I began having typical pfs symptoms 3 years before stopping and I crashed 1 month after stopping and everything became worst.
I believe it’s possible parasitic infection of the digestive track or elsewhere can cause symptoms that exacerbates pfs, and maybe even some of the symptoms we think as pfs are caused by the parasitic infection. I don’t know. I know depression, autism, chronic fatigue and many more illness can be caused by parasitic infections and I know many of us don’t have bifidus and e-colie strands (e-colie is a pathogen but is needed in small qty). They all died off and from what I experienced, taking probiotics doesn’t help, they just won’t “stick”. I think it’s because the effects of pfs are still acting strong and still killing good guts bacteria.
So I don’t know. IMO, the 5ar producing cells are clogged by fin which apparently stay attached to the cell for a very long time, “almost permanently”. I believe fasting, autophagy and exercising makes the body more active and eventually we can either produce new 5ar producing cells or the old ones start getting clearing up. In this success story thread, it seem to take 4-5 years or more for people to get better when they do. There’s not much stories of people getting better after 18 months to 3 years. Then there’s the story of that guy that treated parasitic infection after 10 years of pfs and got better for 18 months +. So apparently it was the parasites the were keeping him sick but could he have healed himself after only one year, when the drug was still clogging hid 5ar cells ? Maybe he needed to clean his cells off the drug before having a chance to readjust his guts biome.
They found infection in my urine I thought there was some nerve inflamation or prostate. So what to do now? How to remove pathogens? Create new cells?
Urinary tract infections has to be treated by a doctor who will most likely give you antibiotics.
Some of us may be immuno-compromised to some degree. If that is so, vit D, zinc and healthy diet helps but really an infection has to be treated by a doctor in my opinion.
They may not know what is pfs, but they can sure treat infections.
The tricks I give to fix the epigenome (according to Dr. David Sinclair) are still good for eventually recovering some of our old self, but it takes time. Lots of time. Infections can’t wait.
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I just found a new success story !
It’s on My official post on my recovery
@Livid171 has been recovered for over 2 years with no relapses and has been sick 10 years prior to his recovery.
He took Rhodiola Rosea 500mg in the morning and Acetyl-Carnitine 500mg 2 times a day to cure himself. Again, as with all other success stories, time seems to have been part of the recovery.
This time no harsh diets or fasts…
Thank you for sharing and congratulation to having made it to the PFS “Hall of Fame or recovered people”
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Hey great thread @Ozeph. Really helps give us hope
Any recent success stories of people recovering within 6 months of taking Fin?
Specifically people who sexually recovered to 1000% pre-fin levels. Would be amazing to hear.
This is my single most favorite post on PropeciaHelp:
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Thank you for posting an early success story ! They are difficult to find because this website does not recognize sick people that heal within 6 months as having pfs.
To me, a human being that suffers is someone we should have compassion for, no matter how many months he’s been suffering. I don’t mean this as a negative criticism, I’m just expressing another opinion. I do respect the rules of this site.
I can confirm, just like this story you posted, that my sensitivity is sometime higher than it was before and sometimes lower. This oscillation in sensitivity has tightened over time and is now more or less the same all the time. I am recovered sexually maybe 95% as prefin, but it took me 3 years. I’m not sure. My sex drive is lower but it could be circumstantial as I’m having problems in my relationship. With girls outside, I seem as attracted as before.
I wish you good luck !
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95% return is amazing, glad it got to that level for you!
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That Casual guy’s problem was premature ejaculation and low hormone levels. PFS is generally normal hormone levels with low sensitivity rather than high sensitivity.
If you read the whole thread , He still had pretty bad sexual shutdown including low libido and ED for months.
Yes, he had hypogonadism. People with PFS have those symptoms with normal hormone levels.
I tested 800 ng/dl for Test and still have low libido and ED. What gives? Do i have chance at recovery?