Sorry but I am angry. I come here every day to see how to improve my symptoms and nothing is clear.
This is not acceptable. Here we are sending money and there are a lot of smart people here, and literally nothing is agreed about what to do!!!
Sorry but, how is that possible?
We are a lot of poeple looking for a cure, but if that is not clear, at least to know how to feel better!! But nothing.
We have to create a sort of protocol. I cannot see how people here is facing this on their own, without any support from a doctor. Couldn’t we pay a doctor to assist us with the protocols? Wouldn’t be smart to choose three or four protocols (even not being proven) and to split us into them and then see what group improves more or get better results? At least we will have some sort of real study to find a protocol!!!
Sorry but I cannot see mor people talking about suicide or how they lifes has no sense any more, like if we are a shadow instead of the happy young males!!!
The studies are far away to find a cure, so let start moving ourselves, but let’s do it well, not alone.
Please comment. Of course I would like to have the support of a doctor also to define the protocols and how to follow up the results and conclusions.
IMO you should listen to your body, find your own protocol and stick to it for long time as I noticed here people are prone to change the protocols as often as they change their socks, it won’t work like that indeed! It all depends on how severe the sides are and and how many mistakes the person will do while experimenting with different protocols, as some of us got worsen while taking stuff without knowing what they are doing… Cheers!
The way you describe, appart from being risky because you feel alone, is not given any valuable information to the group.
But if we can prove some protocols in griups, making periodics controls, at rhe end the results will be clears for all of us.
That is why until now nobody can define a protocol, because everyybody is going on their own. Let’s work together!!
That’s one difficult task bro! For instance some people would say that they felt better while using AI, and we all know what happened with QuantumFaith when he took AI! God bless him! He is not among us anymore!
So, it is better to keep being alone???
Sorry but you are proposing nothing else than we are doing now. That is not an option for us.
I see ourselves in the very same crap situation in 10 years. Of course is mot easy, but we are smart people. Something has to be organized to change our destiny!!
I completely agree. That’s why I think we need to fund a rat study testing treatment protocols. This is the only way to know for sure what protocols work and what don’t. Even if nothing works, this by itself will still be extremely valuable information. The alternative where everybody is testing everything on their own - with a great personal expense and a great risk to their health - is ridiculous and will never result in a treatment protocol because it would lack statistical significance. People are spending thousands of dollars going to doctors, on supplements, on blood tests, on all sorts of sketchy treatments. All of these money are wasted as far as discovering a treatment goes. I have been meaning to write a long post explaining how I see such a study.
The first stage of the study will attempt to induce PFS (or rather, long-term sexual dysfunction - for those who are likely to argue that PFS has not been characterized and we need to spend another ten years defining the disorder) in rats testing various methods such as long-term exposure, then withdrawal, then re-exposure. The goal of that stage would be to determine the most common mechanism for getting PFS but also to establish a reliable method for producing a population of rats with PFS for subsequent trials.
The second stage of the trial, after a number of rats with PFS have been produced, would be to test treatment protocols. Depending on how many such rats are available, a different number of treatment protocols can be tested and compared to a control group. There are a lot of potential treatments to be tested - methyl steroids, DHEA, the cdnuts protocol (this would be important even if only so as to lay that protocol to rest once and for all), DHT, etc. Even if no cure is found, identification of temporary boosters would still be valuable.
Such a study will not cost a lot of money, relatively speaking, especially if done in a lower cost country. By any means, the cost of such a study will be vastly less than the combined amount of money everybody here spends on doctors and treatment protocols, and yet it will be a far more effective way (the only way!) of looking for treatments. It will also be vastly less than the amount other studies have cost.
Such a study needs to be the absolute highest priority of everyone suffering from PFS and of the Foundation. Other studies being talked about and sponsored, such as the Melcagni studies are not looking for treatments but rather are investigating the fundamental science behind PFS (going in the wrong direction, if you ask me) and such studies have a 20-year results horizon. (In fact, no study looking for treatments has ever been done.) This is an acceptable horizon for an academic researcher who has no sense of personal urgency and who’s incentives are entirely in producing theoretical knowledge. This horizon however is completely unacceptable for us, the victims of PFS who need immediate relief in order to survive, even if this relief is not complete or without clear understanding of its theoretical underpinnings.
It is in fact entirely possible to discover a treatment without understanding the underlying biological mechanisms involved. Most drugs are discovered before complete or in fact any understanding of why they work, beyond the superficial. We know that a PFS treatment most likely would affect the androgen system of hormones and the androgen receptor (AR). This is a good starting point. In other words, we would still be shooting in the dark but in a well-defined and specific direction.
There is a credible theory of PFS involving the upregulation of the AR involving epigenetic changes. Epigenetic changes are not that special and happen all the time in the human body and any factor or combination of environmental factors has the potential to completely or partially reverse the changes. There are a number of ways the AR could potentially be downregulated - including by raising DHT for a prolonged time, by methyl steroids which are proven to downregulated AR, etc. It is a simple matter of finally testing a number of such protocols.
No mate! I am not saying we should stick on our own! It is good idea to summarise what is good to take and what would potentially be risky to take, that would help out a lot IMO, though the last decision will be taken individually…
I think that to some degree everyone shares your disappointment at there being no documented clear way to help our situation at the moment.
If there is a system to alleviate symptoms out there, we could easily walk past it.
In the new year, I’m proposing a better catalogue of information which should go some way to identifying the potential benefits some substances could offer. I assume you’d be happy to help, @Tomas
In the meantime, I’d take a look at @Ozeph’s threads on Amino Acids. You might find that there’s something you’d like to replicate and record.
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.
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.
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.
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.
