But there is must be a way to reduce sides and live with that situation, it won’t fix anything when you say “impossible to cure”. We don’t need cure, we need to make ourself in better situation to live with that.
2 Likes
Did you get the sexual sides and insomnia?
If so did these sides go away as well?
1 Like
I’ve started off with severe symptoms of inceased inflammation/autoimmunity. Implementing the
individualized recommendations (based on my microbiome analysis) solved many of my longstanding issues including (but not limited to) depression/anxiety/brainfog, fragmented sleep, constipation, acid reflux, eczema/urticaria, fatigue, lightheadedness, post exercise malaise, ED, etc. IMO, finesteride/Accutane/SSRIs were the initial triggers to microbiome dysbiosis (similar to potent antibiotics) leading to potential autoimmunity. Once the microbiome has reached a more balnced state and inflammation subsides then I’d say one can reasonably resume a more “normal” lifestyle.
1 Like
- I have never heard of something like rheumatoid arthritis getting cured, it would be a big thing if we could cure it and we would have heard of it by now. I do believe you can get symptom free/remission, as is the case with the girl I talked about. She became symptom and pain free. And she was also on lots of medication and stopped taking them all together. That is pretty impressive. But that is also my point, if this was an autoimmune disease there has to be someone here by modulating diet (like I did for a couple of years) that would be completely symptom free of pfs. Yes, I feel better but I never had my libido or sensitivity back like it used to be. If this is an autoimmune disease it cannot be the complete picture, there has to be another part to pfs still unexplained. Because if it was we probably could turn off the disease for periods of time just as the girl had done by manipulating things like diet.
- I am not an immunologist, I just took these common symptoms from wikipedia. I know autoimmune diseases are very different from each other so I get symptoms vary. But still when I read about common symptoms of autoimmune diseases I do not think they fit us. Maybe I am wrong here. The problem is nobody here is an expert on immunology and we are just spitting our thoughts out on this forum.
- I do not believe functionality is easy to check at all, maybe even the most difficult. For example I went to the neurologist and he gave me an mri of my brain. This only scans for structural problems of the brain, it does not check for functional problems at all. If I had cancer or major lesions in the brain, yes it would show up. But that is about it. After this I can go home because I am declared healthy. How the brain works/functions is still an open question for the most part. We can act like we and medicine know all but really we do not know anything. If we look back from the year 2070 we would say that we did not know anything about how the body works in 2020, just as we would look back now at the year1970 in which smoking wasn’t condemned that bad for you.
I am not saying that it cannot be autoimmune, because we do not know what pfs is. The only thing I am saying that it is not very logical in my opinion and at least does not paint the whole picture. But I also do see similarities with autoimmune diseases like gut problems and inflammation that can lead to this conclusion. I have fasted for a multiple days, I have tried multiple diets. Both have an positive effect on how I feel but never had any major remission of pfs symtoms. The only time where I had a bit of libido was after exercise, during my sleep and when waking up, and when sitting dark and relaxing my brain. General rule for me is that the more stressed I am, and the more I concentrate, the more my symptoms flare up and the less libido I have. This does not fit with autoimmune disease to me, but maybe it is who knows.
What about the lads who took saw p?they suffer the same sides as some of us fin and accutane guys.
Do we believe a herb could have the potency to trigger something as severe like a autoimmune disease? Not impossible of course, but it seems unlikely.
The brain injury theory DR Gordon is pushing doesn’t seem to fit either, what about the patients he sees suffering with PTSD, wouldn’t they be walking in with shrunken genitals if so?
I’ve not read too much on the gut microbe theory so not sure what to think of that, but in my own case i’ve not shown any signs of a dysfunctional gut. Not to say its not possible either.
Ultimately i suppose it boils down to what sides you have and making them fit with something, in my own case with my side effects i believe its hormonal/DHT deprivation related.
Scarily it could be a mixture or none of all the above. Who knows.
2 Likes
I’ve had rheumatoid since aged 15 prior to which I represented my school in different sports. I was informed I’d probably be in a w chair by aged 20. The disease was very aggressive yet I never succumbed. I went into engineering and had to leave within the first year to become an officer worker. I tried every diet some food elimination did help early on which was basically down to acidic levels worsening the inflammation. I never ended up in the chair I managed to get to the gym in my late teens and pushed through some very difficult times. I tried everything I can tell you RA is not gut related but more likely down to the hormones. Raging test made my rheum particularly bad, noticeabley the symptons dropped off with PFS! Low Test!!! Females generally get it in puberty or after having kids. "Changes to the hormones! I suspect a change in our hormones also triggers PFS but following the onset many functions become effected which is why we are so different in terms of what works or aggrevates. Receptors, gut, hyoerthalmus, endocrine, lymbic system. Neuro, Symptoms coming out of each one can be extensive then there’s different levels of severity.
1 Like
Hypothesis goes like: anything that has the power to cause an unfavorable shift in hormones and induce a microbiome shift may lead to inflammatory disoders. Improper diets with lots of artificial sweeteners can do this too. That said, autoimmunity has seen a sharp rise in recent decades.
It’s not necessarily autoimmunity per se, it may be increased ratio of pro-inflammatory vs anti-inflammatory cytokines of immune system. Studies are now saying that body uses dopamine to control inflammation and we know less dopamine = lower libido. Increased inflammation also causes HPA hyperactivity leading to increased stress hormones (eg cortisol) and reduced Testosterone, DHEA and growth hormone, all are needed for normal sexual functioning.
4 Likes
It is a shame you cannot watch the documentary I posted since it is in Dutch. I do not know if you have ever tried a vegan diet? In the docu they follow a two people with rheumatoid arthritis from before starting the experiment till the end of it. They follow a man (around 50) and a girl (around 30). The only thing they have to do is change their diet. No more animal foods and switch to a healthy plant based diet. So lots of vegetables and whole grains. The man of 50 does get only a little bit better in the end but not that much if I remember correctly, although he states that his diseases stopped getting worse. The girl however gets completely symptom free from her disease and has abandoned all medication she was taking for her rheumatoid arthritis. The researchers admit that they do not understand what is happening in the gut because it is research that is just starting to develop seriously. Although they suspect that the gut and its microbiome plays a big role in inflammatory diseases such as rheumatoid arthritis. They have a rough picture of which microbiome is bad and good but this research field is still in infancy.
For my case the gut plays a role. I have done a microbiome test like 6 years ago and it came back as severe dysbiosis. I always get better when eating vegan or not eating at all. Precisely what the researchers are stating, although I never was pfs free, not even close. Maybe I am just a bad case. Maybe it is because we are missing some very important gut microbes who knows.
1 Like
I went vegan with RA and there was no change, i remained vegan for years then added in fish and poultry. Under longstanding PFS I had to eliminate vegetables, salad and fruit as they brought hell to my symptoms. I used to consume the equivalent of a bucket full of the stuff. Potatoes are the only things that don’t effect me now. Thanks for the advice though
Alright, in the docu it was the same for one it works for other it doesnt. You are not in the lucky group then. Crazy that you cannot eat vegetables and salad, never heard about that on this forum.
1 Like
@pff yeh mate some do struggle with veg like beetroot, carrots, brocc caulii, and fruits such as apples and berries. Im aware of one guy like me who took fin in the late 90s and he’s very ill states that only water and air don’t effect him. Because of how much everything effects me I don’t doubt what he says. He gets reactions all day everyday. He is seriously fucked. Fasting has lost its effects too.
I agree with you My rhinitis never came back after the PFS.I used to use a lot of paper to get my nose out
Very interesting
Did you get all the other “PFS sexual sides” along with ED such as numbness, shrinkage, loss of sensitivity, poor orgasm and watery dripping semen ?
I have reversed my shrinkage with time, herb cycling and the bath mate. I can get gains in the ED by agonizing estrogen receptor alpha with Hops extract making it noticeably easier to achieve and maintain erections while on it only. I once experienced a temporary 80 percent recovery with the other sexual sides by taking mifepristone but then lost it.
I don’t know anything’s possible and PFS is complex and is different from person to person. I never tried suppressing my immune system but my gut feeling in my case is that it would take a very severe auto immune disease to cause the sexual sides I listed. I believe that if I developed a severe enough auto immune disease ten years ago from Saw P to cause these types of sexual sides I would either be dead or have severe enough neurological damage in my brain of elsewhere that would have me severely handicapped. Also increasing serotonin cures my constipation.
I did take Dut but developed PFS from Saw P four years after taking Dut
Yep I got those symptoms while on fin and for about a year after stopping. Penile numbness was the worst of them all. Fortunately, it has resolved with the passage of time. Interestingly, my E2 would always turn out extremely low and likely gave me low serotonin symptoms. I quit everything cold turkey by mid 2020 and focused on gut + inflammation theory.
I’m not necessarily referring to acute inflammation (i.e. cytokines storm) because as you said it could kill as in the case of covid-19. My hypothesis is more about low grade chronic inflammation, which may disrupt many bodily processes on cellular level and cause chaos. The study on microbiome changes seen in PFS patients have shown distinct shifts and these same shifts may result in changes to immune system.
Live science:
" Unlike acute inflammation , chronic inflammation can have long-term and whole-body effects. Chronic inflammation is also called persistent, low - grade inflammation because it produces a steady, low - level of inflammation throughout the body, as judged by a small rise in immune system markers found in blood or tissue."
2 Likes
@gunnersup any updates? How you feeling? I ordered Apremalist, waiting for it to come in.
Can you elaborate more on your cognitive symptoms? Seeing as you are PAS and I am PFS I want to see the similarities.
Not only do I have brain fog, but lack of emotions, almost no emotional attachment to people, motivations or strong desires. Anhedonia basically combined with poor comprehension.
Has Apremalist cleared that up for you?
This whole passage is why I wonder if PFS is an autoimmunity in which the immune system attacks hormones or their receptors in some way. Like a flood of one hormone or another confuses the immune system and triggers an lymphocytic attack that the system memorizes and attacks consistently thereafter.
I figure it’s time for new theories since this site has been up forever and we haven’t figured shit out.
5 Likes
Hey all, sorry for the delay in following up but my first post was pending for several days and I gave up hope that it would eventually go through. Well it looks like it finally went through!
I finally got the Apremilast in the mail today (4 packs of 30 that I bought with Bitcoin for about $110 that should last me a little over 2 months). The packaging looks very legit as does the pharmacy that it came from, so I feel comfortable that it’s the real PDE-4 inhibitor immunosuppressant deal. I haven’t had so much as a cold in something like 6 years so my immune system should be fine to handle this mild immunosuppressant. It definitely seems to be overactive anyway.
Just to briefly describe my situation: I developed diffuse hair loss 5 years ago along with severe dandruff, extreme pruritis, and folliculitis when doing a heavy workout regimen. I tried everything except fin/minoxidil because of the horror stories that I’d read in order to fix the issue. Since it wasn’t androgenetic hair loss, I never thought it would be worth it to try anyway. I just figured that if I could fix the itching/dandruff, I could fix the diffuse hair loss. Well eventually I gave up because it never went away. I saw several dermatologists who prescribed antibiotics and ketoconazole that never worked.
As an aside, I had been dealing with acne for my entire adult life dating way back to when I first hit puberty. Big ugly cystic bullshit-ass acne. And now the acne had infested my scalp. So the last dermatologist that I saw checked my scalp and was appalled at the folliculitis on my scalp. So we figured I would try Isotretinoin since I told him that I’d tried Doxycycline and Ketoconazole several times and that they were all but useless. So I went onto the Iso specifically for my acne with the hope that it would get rid of the folliculitis too. Sure enough, 8 months and a MASSIVE cumulative dosage later and I was completely acne free on both my face and scalp and still am to this day. And for that reason alone, I don’t regret the Iso.
However, my diffuse hair loss had only gotten worse and the pruritis gradually started coming back to the point where I wanted to rip my scalp off again (the itching went away while on the Iso, but the hair loss didn’t). I also developed keratosis pilaris all over my arms and upper legs for some reason, but that’s neither here nor there.
So finally I said fuck it and got some Minoxidil and Fin. I decided not to take the Finasteride orally to hopefully avoid the side effects that I’d read about. I crushed up the fin pills into a powder and mixed them into a minoxidil bottle and applied each night for 3 weeks.
After a week or two I became incredibly lethargic all day every day and insomnia set in and got progressively worse. I assumed that it was due to the fin and/or minoxidil getting into my bloodstream through my scalp and causing these issues, so I decided to discontinue. For the two days after discontinuation, I was horny as hell, felt incredible, had amazing workouts, and had energy out the ass.
You all know what happened next. The crash. And all of the horrible things that come with it. Basically everything you’ve seen on here except for numbness of the penis. Shrinkage, loss of libido, extreme insomnia, extreme fatigue, tinnitus, and a bunch of other shit that I can’t think of right now.
So here I am reading all of the failed attempts at fixing this “PFS” and realizing that there’s probably nothing I can do about it. I saw an endo and got all the blood tests including DHT and everything came back eerily normal. Slightly high test, slightly low E, slightly low DHT, normal thyroid, normal LH, everything well within normal range. Hell, if I wasn’t experiencing all the issues that I am, I would be ecstatic about the blood tests! I spoke to the specialist in San Diego that the PFS foundation president referred me to and discovered that he didn’t have a cure either.
So this is the first post that really intrigued me after digging through the archives. So I said fuck it, I’ll try the Apremilast. Shit is insanely expensive in the states, but there are some options online if you scour deep enough. I found one that was pretty cheap, but they only accept Bitcoin or wire transfers. I said fuck a wire transfer so I learned about Bitcoin and bought some lol.
Anyway, the Apremilast showed up today and I’m going to start taking it. My hope is that even if it doesn’t fix the PFS, hopefully it will stop the hair loss and pruritis as happened to the first poster. I haven’t gotten sick in a really long time so I’ve long suspected that some of the issues I’d been experiencing even prior to the PFS were autoimmune related since my immune system seems to be very overactive.
Anyway, if you have any questions, let me know. The first few days on the drug are low dosage days to allow your body to acclimate to it since it causes severe stomach upset for about the first month. As far as I can tell, there are very few side effects beyond that so I feel surprisingly comfortable taking it. If I grow a third arm however, I will let you know. From what I’ve read, it seems to take at least a month to see the immunosuppressive results so we’ll see how this goes.
I should also mention that I found some pretty expensive probiotics that help with the neurological symptoms. The gut-brain axis is very real. Since the gut has immunomodulatory effects, I’m even more inclined to believe that this is some kind of autoimmunity.
5 Likes
Tell us if its helping sexual sides.
1 Like
Can you people also take the survey? @boki @nasa01 @LifeOnHardMode @MCurtone @5-alpha-victim
Takes 5 minutes is is just as usefull (if not more) than testing a new medicine and comming up with a theory.
3 Likes
I did already.