I will have a look in a sec… Thanks!
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Please do not chance the content of the post, thanks!
There are other posts for these discussions.
Ok, apologies.
I think you should maybe write a little more about your plan though. Can you give us some detail about what you want to happen?
Hey Greek.
The general idea has been already described before. This is just an idea and i am asking the rest of the pople to add their experiences or opinions in order to see first if this has sense and second how to do it. This ha to be done with a lot of people together, not by me. That is the typical mistake, to go alone.
Tombeathis we have to be smart and go together, and act together, with something that can change the current status. I do not want to stay here with the same things, day after day, week after week, year after year.
Many years passed by and nothing has been created to beat this. We are here alone, literally. So my point is to work together,and assume risk together.
To start, I would appreciate that the hormones profile was in a excel table, for example, with all the values, one column for date, and one table for each person here. With a little description of our symptoms, and the protocol done. This is much more useful than 1.000 posts that you have to read. That is how a doctor works, so why we don’t? At the end there is no doctor helping us.
On that table you will be able to see the % of recovery for each person doing what their are doing.
Another thing, is to create 3 or 4 groups of people following the protocols that seems to have some degree of success, and report what happens. We can have perodics blood tests, results, etc, before during and after ecah treatment. That way we can obtain some data to adapt the best protocol and at least to have some tips to improvemournsolution.
Regards.
I think this is a great idea to end the never ending
Afterall this forum has been online for years yet zero doctors have stepped in and suggested a way forward.
We can all play them guessing game of what works and what doesn’t but to me its all pointless to a degree if you don’t really know what’s going on with hormones etc
Personally after going round in circles hitting my head against a brick wall trying loads of different supplements and hormone drugs I’ve given up chasing it all on my own as such I’ve now opted to do things under a urologists watchful eye with blood tests to better understand any positives or negatives.
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Hi. I found a protocol that works for me and I will detail it here. It doesn’t mean it will work for everyone, and I strongly suggest you don’t go in head first and do all that at once (except for the diet). The trick is to introduce supplements slowly, do some research on them, and stop or reduce at first sign of troubles. I read stories of people having bad effects from what they were doing and getting stubborn, thinking it may pass, and they got worst (sometimes much much worst.) Listen to your body. If it tells you it feels bad, it’s bad and you should stop (or tapper off for certain things that cannot be stopped all at once)
So I crashed around end of May 2018. I had moderate sexual pfs symptoms, like a much lower sex drive, weaker orgasm and softer erections. I had a phase with zero sex drive, where a pretty girl, a dude, a dog or a tree were all equally non-stimulating. It really felt weird at the core of my being because my sex drive had oriented my whole life and gave me motivation and objectives. All was gone and I was just hanging there, in emptiness, asking myself what’s next.
But the neurological effects were the worst thing. I had total insomnia. I now believe it to be narcolepsy because of the similarity of symptoms: rapid transition from sleep to awakeness during the night and inability to consolidate wakefulness during the day which means feeling foggy, tired and sleepy all day. I believe it to be narcolepsy also because of the presence of cataplexy (sudden muscle weakness, inability to climb a staircase or stand up for too long, speech slur, cognitive disability, which I all had) and because what I believe is the cause of pfs symptoms : an auto-immune response to hyper-active androgen receptors which also causes auto-immune response to food well tolerated before (food allergies) and an auto immune response killing Orexin producing neurons in the hypothalamus (the cause of narcolepsy). I had panic attacks, severe anxiety (enough to want to die), depression, brain fog, coordination problems, extreme fatigue, etc…All of which showing damage to the hypothalamus / hypophysis.
I also had gastric reflux, headache 5 times a weak, stomach ache, bloating, poor emptying of food from the stomach into the intestine etc… showing a dysfunctional vagus nerve that adds to the neurological symptoms. I could also have had my guts flora out of balance. It also causes vagus nerve disorder and neurological symptoms.
Seven months later, I’m 98% symptom free and I have been for the last 3-4 months. The only symptoms that’s seems resilient and remains strong is waking up many times during the night, but I’m having an overall good enough quality of sleep to have a productive, symptom free day. Sex drive is still 10-20% lower than before, but I can still want to have sex every day (or twice a day). Sensitivity is also 10-20% decreased. Both are improving with time.
The first and most important thing I’ve done was to switch to a zero carbs (well, less than 10 gr a day), ketogenic / carnivore diet with lots of saturated fat. Extra virgin, cold pressed coconut oil (2-6 tbsp a day) really helps in this, up to this day. This has eliminated almost all neurological symptoms in 3 days, as well as ALL the digestive issues.
As soon as I started feeling better, I bought myself a beginner weight lifting set and started exercising with it.
Not only I started getting muscles, thanks to the protein and exercise, but it made me feel more energetic and cleared my mind (and girls are really reacting to muscles ! I had no idea.)
Then I tried a gelatin (collagen) experiment with mixed results. I had a mini crash during the experiment but did manage to fix my allergies to carbs. If anyone tries it, I suggest to start with 1 gr a day, increases by 1 gr every day, take no more than 5 gr a day and stop at first sign of troubles. I think this could be skipped as the carnivore and later the amino acid supplements can have the same effects.
I’m now having 5 gr of gelatin every two days, and 1000 mg of Glycine the days I’m not having gelatin.
Then I started taking whey protein isolate / vegan protein shakes once or twice a day. This, along with the 2 rib eye steaks from the diet, gives me a HUGE amount of amino acids. I then decided to adjust specific amino acids by taking individual supplements of those. This has eliminated the remaining neurological symptoms and have even increased some personality traits and cognitive abilities to a level higher than before I took fin.
Here is my current protocol, but bear in mind it was introduced slowly, experimenting and adjusting at every steps. It will most likely continue changing as I’m fine tuning it.
Upon waking up at 6:30am & after sending kids to school:
Half of all Vitamin B (3,6,12), biotin
5-HTP 100mg
Tyrosine 500mg
Glucosamine (not every day)
Pro-biotic (not every day)
Breakfast:
Coffee with Equal
Sometime bread and butter, or a small danish, but that messes up the less than 10 gr carbs a day.
2 tbsp coconut oil
L-Dopa 350mg
10am:
Half whey isolate half vegan proteins shake with added:
Valine 2000 mg
DLPA 1000 mg
Pine Pollen 5 gr
Choline Inusitol 500mg each from1 pill
Glutathione, 250mg from 1 pill
Lunch:
Rib eye Steak 250-350 gr (or some other fat cut of steak), saturated fat and kale 250 gr
Fat can be butter, ghee, lard of tallow.
Right After Lunch:
Vitamin A 10000 iu
Vitamin D2 1000 iu
Vitamin D3 10000 iu
Vitamin E 4000 iu
Vitamin K2 100 mcg
Multivitamin for men
Selenium 70 mcg
Zinc 25mg
Before exercise:
Carnitine 1000 mg
Arginine suite (also Arginine AKG, Citrulline, Ornithine)
I do at least some exercise everyday. Sometime more, sometime less. I always take Carnitine but not always the Arginine suite which I take before a hard workout or before sex.
3 pm:
5-HTP 100mg
Tyrosine 500mg
L-Dopa 350 mg
Half of all vitamin B
+2 tbsp coconut oil
200 ml of electrolyte mix
(in a 1.5 liter bottle: 10 gr magnesium chloride, 5 gr potassium chloride, 150 ml lemon juice or 8 gr citric acid, natural orange/lemon flavor, fill with water to the rim)
Dinner:
Either same as Lunch or something lighter like a soup with some gelatin or bone broth, some cheese and some raw veggies like cabbage, cucumbers or celery.
8PM:
Half whey isolate half vegan proteins shake with Glutamine 5 gr
Gelatin 5gr in hot water with beef stock (every two days)
+2 tbsp coconut oil
Sometime I skip the shake if I had a heavy meal at dinner. I still take the Glutamine and the rest.
Before sleep at 9pm:
3 mg Clonazepam
125 mg B3
Glycine 1 gr (on no gelatin days)
A tiny shooter of maybe 25mg of magnesium
Sleep at 10pm
Carefull with high doses of Theanine with high doses of Arginine as it can cause drop in blood pressure.
Also I rarely take all that coconut oil. But when I do, I do it at the indicated times. I take some everyday.
Currently testing:
DHEA 10 mg at 10am
Pregnenolone 10 mg at 10am
DLPA is also somewhat still being tested. So far so good so I included it as permanent.
Soon to introduce Lactate and pyruvate to boost Orexin expression.
Also felt good and slept good with fresh cabbage juice at 8 pm.
Conclusion: I’m not doing this perfectly. But the more I stick to this protocol, the better I am. The days are mostly good, the nights not so good. It all hinges on how good a night of sleep I can get.
Also keep in mind this is what’s working for me. If you try this, you will have to find your own balance through trials and errors.
Here are the links to the individual threads on all of this: The diet and amino acid ones are more relevant:
I wish you all the best of luck in dealing with this disease. I consider this whole ordeal to be a gift rather than a curse.
I will later ask the moderators of this website if I can talk about the spiritual aspect of the healing process, from meditation and how to proceed with it to some core beliefs that enables me to see this as a gift.
It probably violates the Terms of Service, which I still don’t totally agree with but abide to nonetheless, to the best of my knowledge, as I believe sharing my results with you guys is more important than being fussy about what I cannot say. At least, there are things I can say so i make the most of it. But that is of no great importance. As it is said in Taoism, all is well within its place, in the continuing flow of the Universe.
So I wish the best to you all.
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Hey @Ozeph, thanks for the above. Quick question - what is your weight and height before you started the protocol? You are in your 40s correct? What fitness level were you at before the protocol?
I’m 50 years old, 1.79 meter (a little less than 6 feet), I weighted 80 kg (176 lbs) and I was in bad shape.
On an episode of cataplexy, I couldn’t climb a flight of stairs without holding to the rail. It would take time to reach the next floor and I would have to rest between floors (I live in a 3 floor house). I couldn’t stand up for long, I had to squat or sit on the floor, in the middle of a shopping mall. This happened almost everyday between my crash and the diet.
When not on a cataplexy episode, I could swim 1 lap (80 feet) and I would be out of breath, I could do 1 pull up with efforts, 10 set ups and it would hurt.
I started this diet on the 19th of August. That’s about 7 (very desperate) weeks after crashing. So I’ve started this protocol 4 months and 9 days ago.
I lost 2.5kg (5 lbs) on the first week of the diet. Mostly from losing water and “un-bloating”. I’m now 60 kg (132 lbs) and I have almost no fat (no place for estrogen to hide). I lost 25% of my weight, and increased my muscle mass at the same time (I dare not think what this 25% weight loss would look like if placed in a drum. What I lost I shouldn’t have had to begin with. It feels gross to think I was carrying all that around) . I grew a six pack, some pecs, square muscular shoulders and well cut biceps and I look like a thin marathon runner.
Last I checked, I could swim 50 lapses (1250 meter, 4000 feet) without more than 90 second rests in between sets of 10 or 20, I could do 100 set ups although I stopped, it’s too boring. (I do ab wheel roll outs instead. Much more complete, much harder and it really builds the upper torso. I can do 10-15 completely flat ones) and I can do 12 pull ups, lifting my knees to the bar as well.
All of this is not impressive of itself. People who train for real can do better than that. But for me, it’s a real victory over my disease. Plus, I’m just getting started.
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So what about the improvements on the sexual side? It is weird that you never mentioned it. Can you go in details here please? Thanks.
Have you read the thread he linked to?
My bad, im in uni. Didn’t saw it.
You can read my profile on Ozeph: my story
And my thread on Amino Acids for Sexual Symptoms
I don’t think taking just a few aminos will restore it all. Sex is at the core of our being. we are a community of cells, living in an organised manner. Most of our cells are the descendants of the first cells that made up our body when we were kids. A cell will be born, live, reproduce and die and we won’t feel anything. But we are constantly renewed. Sex and reproduction is the path to immortality for this community of cell. (but not for us as individuals). It is so important that it supersede individual survival in many cases. It’s very complex and is affected by a whole lot of different things in our brain, hormones, chemistry, even our guts.
So to fix it, you must take a complete, overall approach in my opinion. I don’t think that the aminos described in Amino Acids for Sexual Symptoms can do the work all by itself. I think diet, exercise, extra protein, extra aminos for the brain and all I’m doing contributes to fix the whole body, including the sexual aspect. The idea is to give the body all the construction blocks it needs in abundance, be it aminos, minerals or vitamins; eliminate what intoxicate it and to exercise to accelerate the body’s metabolism and construct new cells.
But to answer the question, I didn’t have much sexual symptoms. My sex drive went down, but not completely. I could be satisfied with sex once a week (instead of minimum once a day as before, although 2 or 3 times a day was what I needed). It became harder to have erections and I could lose them more easily. But a little stimulation by my wife and I would get back in the game. I had lower sensitivity. It must have happened 4-5 times where I just could not finish. And my balls have been hurting for almost 2 years, since before I crashed.
At some point after my crash I ended up with zero sex drive. but not for long. I also don’t think I had night erections and because I never had zero sex drive in my life, but was exasperated by too much of it, it never came to my mind to masturbate to see if I could have an erection.
All of this changed when I started the diet. The sexual symptoms improved a bit. Then I started protein shake. It got better. Then I started the individual amino acids, it got even better, and finally I started looking for aminos specifically for sexual symptoms.
Now sex drive is once every two days and getting better, erections are not a problem. I get hard when we undress for sex ! Sensitivity has increased but is not normal yet. Although after taking fin for 20 years, what do I compare it to ? When I was 21 and would come after having sex with a girl 3 minutes, or 5 years ago when I could come in 5 if I wanted or last 20 minutes if my wife was taking more time to finish. (I’m a gentleman, I let her come first.)
My balls are still hurting but it’s decreasing.
Altogether, I’m at 90% normal regarding sex. I still have more sex drive than my 34 year old wife.
Insomnia was the first symptom to appear 5 years ago, and it’s the most persistent one. But I’m going to beat it eventually. I’ll find a way.
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Did you ever have the symptom where there’s no sensation during orgasm? Its one of my most worrying symptoms that has shown little improvement over the years. Whats weird is that it’s also way worse in the morning than at night but even then it’s never really satisfying. Has my worried that there’s some nerve damage or muscle wastage or something.
Surely if it was damage it would work or it wouldn’t? That there’s a variety of experiences would suggest that levels of something or other are making a difference to your experience.
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I have to wonder if many of the stories around getting into superb shape, and thus, making people feel better are simply a factor of them… getting into shape. Getting into top performance will make anyone feel better and will definitely have an effect on our sides. I was in pretty fantastic health (run a 6 minute mile, lift weights, no fat/toned, young 32 year old) before taking FIN and then after FIN sides hit, I went into workout overload (cdnuts protocol), working out 6 days a week and getting into peak performance, but it never reaaaaally budged anything for me long term.
This is NOT to take away from anyone getting into shape, or put down the shape they were in before. But every time I read how working out has really helped people, I have to wonder what baseline they we’re coming from. If they are coming from a general ‘out-of-shape’ starting point, then working out hard for a few months will make anyone feel as if they are getting better. But it isn’t really affecting the core mechanism of PFS, it’s simply make the vessel by which PFS travels in a little healthier, and by result, makes the person feel they are getting cured. I have to wonder if the androgen effects from working out are improving or destroying our actual PFS symptoms.
Just food for thought.
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Yes I did have ejaculation without orgasm. I’ve had very dim orgasm as well, asking myself why do I bother having sex at all if that’s what I get. It’s more obvious in the morning, so as a rule, I have sex only during afternoon or evening. Afternoon being better, because I’m fully awake and sensations are better.
It’s getting better. But first things first. I believe pfs is in part due to an autoimmune response. So that’s the first thing to address and ketogenic / carnivore diet are reputed to do exactly that (they fix leaky guts and ulcerated colon and get rid of food allergies which are causing auto immune response and inflammation).
Cereals (which contains phyto-estrogen and are notorious for food allergies) and sugar is to be eliminated (at least until you fixed your guts, and then you can only take a little. Like 20 gr a day). Fruits and vegetables also have to be eliminated. Plants can’t run from predators so they develop chemicals to protect themselves. Those chemicals makes them hard to digest, creates inflammation and makes us bloated. They also change the flora of the guts which greatly affects mood and the chemistry of the brain.
When I started the diet, I was on a 100% carnivore diet. The only non-meat product I would have was coconut oil, as it prevents colon cancer which is linked to eating too much red meat. Also with time, I eliminated most meat except beef. Chicken is fed with soya protein and will get your estrogen up. Pork is fine for lunch, but hard to digest so not good for dinner. When you go to sleep, you don’t want to be digesting anything. Fat fish are full of omegas, to which I’m reacting badly. Lean (white) fish is fine and easy to digest. makes a good evening meal.
As for vegetable, I only eat 2 or 3, for their properties. I treat them as food supplement. So I eat mostly kale because it’s a super-food and a powerhouse in vitamin and minerals. It’s about 5 times more nutritious than broccoli or spinach, which we all know to be nutritious. It’s also full of DIM, which I use to prevent the conversion of testosterone to estrogen but i won’t get too much it into as It’s controversial. Spirulina would be a good choice but I went for chlorella instead as it is the most powerful detoxifier. I drink fresh cabbage juice in the evening. It’s great for protecting the stomach and it helps me sleep better (I don’t know why)
Anyway. I’m making this too long. L-Valine, L-Dopa, L-Carnitine (with muscle building) will help sensibility. But only if you stopped your auto immune response and the body’s level of inflammation. And I think you have to saturate your body with protein and saturated fat (which are the building material for cells, hormones and the nervous system)
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Yes, that contributes to a great extend. But my approach is to saturate the body with amino acids and saturated fat so it can build and repair what needs to be. But that won’t work if I sit in front of my computer all day.
I exercise not for the muscle of for swimming 50 lapses. I’m an intellectual. In the past, I though of those as trivial, boring and a waste of time. I’ve changed my mind about it though. Not only it makes the body feels better, but it increases the blood flow to the brain. You can actually raise your IQ and increase your focus by exercising. It’s great for the brain !
But the main reason I’m doing it is to increase my body’s metabolism. This way, not only it creates more natural growth hormone, but it makes greater use of all those aminos and saturated fat. It makes the body work more and faster, thus healing faster. Plus creating muscle also creates new, hopefully healthier androgen receptors.
Many aminos will only activate with exercise. Like L-Tyrosine. I jump on the trampoline after taking it, to build up a sweat and get my heart pumping.
After taking L-Carnitine, I do weight lifting. If I don’t make muscle, Carnitine will have no place to go and will be flushed.
This is my approach. I’m sharing what works for me. I’m not trying to impose my views on anyone. Plus I know for a fact that when pfs threw us off balance, we all ended up in a different, unique fucked up state of imbalance. What works for one may not for another. That’s no secret. But it’s also why I took an all on approach and decided to give my body everything it needs in large amounts (an to eliminate all that’s hurting it). Then it can sort out what needs to be used to fix what’s broken and to flush what’s not needed.
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@Ozeph
You sure you react bad to omega3? Iam supplementing 3g (EPA/DHA combined) and Iam wondering if I have a bad response to them because its likely.
Yes I am. I bought the bottle, took it 3 days, felt bad about it and stopped. Then I was better.
Some people like to do blood test and have a specialist tell them if they’re doing good or not. It has it’s virtues but it’s also costly and takes time.
I just take a supplement, wait a few days and see how I feel. I’ve discovered new ways of feeling weird I never felt before ! If a supplement makes me feel bad or weird in a bad way, it’s out. If I don’t feel any change I may keep it and if I feel better, I definitely do keep it. However, if it feels too good (as in too good to be true) I will reduce it because there’s a chance of overreaching the state of balance and falling on the other side.
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I’ve thought this quite a bit lately. I wonder how many of the “symptoms have improved” threads are simply people boosting their Sex Drive/mood/whatever issue they had, which would have happened due to what they were taking regardless of PFS.
i.e. maybe if they had never taken fin but they took all these amino acids worked out, etc. they would go from their normal 100% to 130%. Now, due to fin, their baseline is 50%, so maybe the same thing boosts people to 80% for the same reason it would have boosted them anyways
That isn’t to say it’s really “curing” PFS, but I guess if it feels better in the end, improvement is what really matters