My advice that few take seriously

Guys,

Sorry my post will ramble a bit, don’t have a lot of time to tidy it.

Part of the reason why I don’t come here often is that I get frustrated when people only focus on one substance to cure them and ignore other comments regarding other things that can help to some extent. I fully understand this, I spent years only focusing on what substance I should take to make complete recovery, and I ignored the small things I can do that can make a difference. This is what my post is about, and I have come here often to suggest that we compile a list of dos and donts on many many levels, not just food.

Here is where I am at
After I crashed in april 2013, I reached a stable new-equilibrium toward 2017, where my symptoms of genital numbness are no longer a daily constant issue (decreased from 6 to between 0-3 max), and my libido is not always very low, and my energy level and brain fog are completely absolutely gone, my sleep is better (but I take clonazepam), and my depression is way way better (I take lamictal).
I hope I won’t jinx myself, but these horrible days of brain fog are long over, and when I have numbness and shrinkage, then my reaction is: “what did I do wrong” and sure enough there is something that triggered it. It is not enough, I want a complete recovery, I am not satisfied with what I have now, at least I want to be constantly 80% better all the time no matter what I do and eat, but so far this has not been possible, there are things that can trigger me, and I need to avoid them.
I recently noticed that taking Vitamin D daily helps me, while few years back it would help then would cause a crash. Now it seems that I can take it. Last time I took it I became so horny over many days, but I did not want that back then. Now I started taking again, and I can keep you updated.

So my point is that we should not underplay the things that worsen symptoms, and they make a lot of sense once I look into them, and for everyone’s benefit we should compile a list.

What helped:

  • LOW CARB. I even avoid fruits.

  • Exercise, especially low rep high intensity, especially lower body, other people have reported the same. These increase T organically.

  • eat green, not any green and not any veggie, but the ones we do not suspect to affect hormone. For example I avoid broccoli and squash. TO be on the safe side I load up on spinash and arugula, and east eggs, steak, eggplants, hummus, … whatever is not known to be harmful… Some are, such as parsely. So not because it is green it is good, we have to compile a list… if we want to imrpove.

  • I took progresterone for a while, have a post on it a while back, and that was something I am pretty sure helped me. I am not making any advise here, it is dangerous to mess with the body especially with hormones. But I remember I did very very diligent research, noted the experience of every single user on this forum and other forums, and weighed the pros and cons. I did about 2-3 months of that. Once every two days very small quantity rubbed on my calves. Which is one of the reason I think ESTROGEN is a problem. See more below.

  • I did not notice an effect of masturbation. I now do much less on purpose but that is for the pelvic pain. If not I would do more, it did not harm me when I am not in pain. I had sex multiple times a day, with the use of Cialis, as long as my libido is above 4/10.

  • I avoided messing with hormones, no supplements to boost libido nor anything. With one exception, on days where I meet a new girl and my fear trumps my horniness, I might use a bit of androgel, and it works great. But I used it like only 15 times since 2014.

  • Before sex I always take a mix of viagra and cialis. I find the mix of both better than either. Cialis on its own does not give you libido-proof erection, viagra is more likely to do so, but a combination allows me to have sex the next day without having to run and take some more while the girl is around.

most important of all Something that is often dismissed here, and I wonder why, I can bet I will have a couple of replies at most on this: I learned about the substances that set me back really bad… And I realized they are EVERYWHERE. And unless we can make a list of these things we are playing with fire without knowing it.
Example: I noticed that after I put a moisterizer, a specific one, I am more likely to have some numbness the next day, I was never certain of why, and whether something else is causing it. I then studied it and looked up PARABENS. Are you guys aware of that? I am sure some are, but not everyone. Parabens increase Estrogen (the inhibit a receptor that converts active estrogen to an inactive or less potent form). The problem: They are everywhere, check your moisterizer, your mouth wash, your body wash, your shampoo. If you see paraben, I would throw it. Last week I threw everything out. Last year I thought it was just my moisterizer, I am not discovering it is even in my mouth wash. How can you make consistent recovery if you are taking something that makes healthy men less mainly. Don’t take my work for it, check websites written on this…

Some of the other things I avoid (and I really hope you guys can contribute to that and share your experience) are below. I do not exagerate when I say most of these things will set me back weeks, i.e. I have bad symptoms for weeks.

  • soy obviously (did you know mayonnaise has soy?)
  • sugars, any and all, I only take lower sugar fruits from time to time, unfortunately because I do like fruits.
  • all high glycemic carb. As you can see, this eliminates a lot of carbs… Especially bread, rice, pasta.
  • chocolate, I def noticed its effect
  • TEA, absolutely not
  • cofffee, so so… not a deal breaker like tea… to me at least.
  • squash and similar veggies
  • everything with parabens in it. I am sure I am missing a lot of estrogenic substances that I do not know of. Wish someone can help us here…
  • smoking not great … Not a major trigger but overtime it slows me in that department
  • alcohol: I just drink socially, a couple of beers when I have to, sometimes more, but that is something I have only been able to do since 2016-17. Before that is was bad.
  • watching too much porn. I thing everyone knows that by now.

Personality wise: Depressions lowers T and confidence increases it, it has been studied. Self pitty, guilty as charged, is bad for us… Lamictal is the only antidepressant I tried that did not have side effects…

Anyway, whomever is willing to help us compile a list of things we should avoid (food, cosmetics, household items, all chemicals) would be great, and I am happy to speak with you anytime. We can have a phone conversation.

I have to be honest: Research is unlikely to come up with a drug for us anytime soon (not in the next 5 years at the very least, guaranteed, our problem is way too complicated), so our only hope is to make progress on the margins.

I realize that my advise is similar to many of the success stories, I do NOT consider myself a success story, but I can see that if I manage to avoid all estrogenic and harmful substances, I can slowly get to that elusive firm 90% without setbacks.

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Hi @numbduck,

Firstly, thanks for sharing your experiences and I’m very glad you’re feeling better in your personal situation.

I do agree with you regarding the importance of things that have harmed patients, particularly severely. I am personally saddened that patients can fail to take into account the reality and fragility of the extreme end of PFS, which is what I experience personally. The administrators and moderators continually warn regarding antiandrogenic substances, as, having personally read this entire forum and awor being here for a decade of it, historically and demonstrably these have caused significant worsening, sometimes permanently, and preceded completing suicides. Unfortunately, it has always appeared very difficult for many patients to take into account that people do not respond the same way to the same things, particularly when people are strongly declaring a cure, which obviously everyone no matter their situation would desperately want. This desire to feel better obviously drives the focus you mention being a source of frustration to you. An objective view of reports tends to get lost in the shuffle of someone’s insistence.

I have received PMs begging me to warn users about things you are describing taking due to a permanent worsening. Things taken by some of the few ‘recovery stories’ that are brought up time and again (because of the comparative paucity of them) have brought people here in the first place, along with drastically worsening the symptoms of others. Due to a profound survivorship bias that in my opinion is arising from the need for hope, it’s very clear that people will discount certain outcomes from substances/therapeutic efforts despite the high volume of nonresponse or deleterious outcomes. As defined:

Survivorship bias or survival bias is the logical error of concentrating on the people or things that made it past some selection process and overlooking those that did not, typically because of their lack of visibility. This can lead to false conclusions in several different ways.

This is a known psychological bias and is highly demonstrable across this community. I see it as unavoidable in a situation like this and just a challenge we have to manage. It is not practical, however, to cite the complexity of the issue without taking into account the complexities of responses; the reality of the problem and the phenotypical variation precludes “dos” at this point. It is particularly difficult, as antiandrogenic substances that clearly have seriously harmed people have rarely been reported as an effective treatment in others. Substances that reduce ligand or nuclear AR (including progesterone) are unsafe for PFS patients:

As a site, we can only warn them of the risk of further antiandrogen exposure, as it is what gets people here in the first place and the benefits can be short lived and backfire dramatically.

Additionally, what you are describing, let alone what you are taking, severely harms me. I am extremely underweight and exercise increases my symptoms, particularly constant pain and derealisation. I further lose muscle, as reported by others in an extremely severe condition. In dietary terms, when I first crashed I did some diets recommended by forum gurus which included replacing gluten with buckwheat, and had a horrid reaction. It was only well over a year later when a mild case recently reported buckwheat giving them erections I suspected this to contain antiandrogenic metabolites, and found it is very high in phenolic flavonoids including rutin.

When you ask “How can you make consistent recovery if you are taking something that makes healthy men less mainly”, an absolutely key observation is that substances with antiandrogenic properties improve PFS cases quite often at enormous risk (as described here with a convenient immediate demonstration). Many respond terribly to DHT which is a highly potent androgen and nonaromatisable. A severe case (@douglasmich) who later sadly took his life after throwing the kitchen sink at himself with therapies told members DHT gel induced further rapid penile damage, which is a paradoxical response as studies associate topical application with penile growth. I don’t have any time to go into science here, but in my opinion there’s a reason what awor set out ten years ago, including persistent deregulation of the AR and the consequential effects including disruption of neurosteroids, have been confirmed in primary research since.

So how can we provide more useful data on this front of therapeutics and substance avoidance? Obviously, patients reporting their experiences in absence of their theories and interpretations are what has been high value over the history of the forum, and attempts have been made to organise symptom reports in medical literature, something we have recently really moved forward with through the launch of the survey. What we are doing is working on implementing a system for standardised reporting that will be continually updatable by members and provide users a way to report the outcome of foods/substances/therapeutic efforts on their symptoms. For each inputted, users can provide a rating from extremely negative to extremely positive for two time frames: at first, and then either now or at the conclusion of taking depending if they continued/stopped. This will provide clear and standardised data on how substances affected people without distortion through patient biases or theoretical inferences. This will at least be useful and immediate information for those interested in practically considering outcomes. Aside from warning about what’s proven to be the greatest risk, I think this is the best way of finding practical information regarding this in the meantime. Users will then have to make their own minds up while being able to draw from a standardised data set, which isn’t currently possible. Telling people what to “do” is not something that is remotely feasible given the state of etiological understanding. I hope there will come a day where patients can be safely providing a “do” more than a “don’t”.

I hope that will be interesting to you and you take part when it’s ready. Additionally, it’s very important as many users as possible take the post-drug syndrome survey (which is live right now and accessible from the bar graph icon at the top right on a desktop/laptop computer) to gain data on your situation and symptoms over time. We’d really appreciate it if you could find the time to take it. It will provide scientists with important pilot data and is already allowing analysis of things that just couldn’t be calculated from anecdotal posts.

best

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I’m on almost the same diet as you and I get good results from it. Plus I take some amino acids, vitamins and minerals.

It’s so limited, I’d be shorter to list what I eat than what I don’t. But basically, no carbs, high saturated fat and lots of meat. Plus a few green veggies like spinach and zucchinis. I calculated I get no more than 3% of my calorie intake from carbs, and more than 70% from saturated animal fat. Plus I do exercise.

I basically replaced carbs with saturated fat as my energy source and I’m in constant ketosis. I’m 51 and I have the same body I had 25 years ago. I look younger too, people think I’m thirty something. For some reasons, all the dark spots due to age, on my face and hands disappeared and I don’t bruise anymore. All articulations have repaired themselves, I don’t get any headaches or stomach burns anymore and of course hypoglycemia never happens… Lol… All neurological symptoms from pfs have disappeared and I’m more calm, more focused, less anxious or depress that I’ve been in my life, even compared to before fin.
Immune system is strong too.

It goes without saying I’m a strong advocate of ketogenic / carnivore diets. But I’ve learned to be and let be. It’s people’s choice if they want to eat carbs or not.

I’m not cured, but I barely have any symptoms. The only one that remains, and it happens to be the first one that manifested itself when I was taking fin, is insomnia. I sleep 6 hours straight and then turn and toss, with lots of dreams for the remainder of the night. Not bad. I’m happy.

My only worry is can I live on such diet the rest of my life ? Half a pound of saturated fat a day seems so contrary to all I’ve learned. But so far, blood tests are good. Ha ha ha. !

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I can vouch for intense lower body exercise. I have kept a journal for two years and on many occasions erections and libido are much better following squats and leg press exercise.

On the thread, “List the Three Things that Have Helped You The Most” exercise is by far the clear winner

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Welp, that explains the shitty 5-6 hours I had last week after eating buckwheat waffles. So many damn foods to avoid.

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Hi Axolot,

Thanks for your reply, I would definitely be interested in that survey and happy to contribute.
A lot of what you say makes sense. I understand what survivorship bias mean, but here I have to disagree with you on a couple of notes. (By the way, I am a statistician, (PhD in Stats), and has developed a questionnaire back in 2003 for an earlier version of this forum. At that point it was saw palmetto that brought me here, before I stupidly took P 10 years after)

Perhaps the biggest survivorship problem we are running into at this forum, is that people who ‘survive’ do not come back and tell us their story. That is the case of every disease, what you find online are the most difficult cases.

But with that in mind, when someone comes and reports a recovery from a specific regimen, and assuming the person has clearly determined causality in his experience, then that data point is important. Even though we know it might not apply to everyone. It is important nevertheless.

Now regarding invasive regimens, where you are taking a gamble, I am not making any recommendations on that. I personally have avoided them, and I am not recommending progesterone, but I had to mention it, since it sheds light on the estrogen link. Before taking it, I did an excel sheet of all member that took it. Still, I wanted to report it, but not condone it. I am not a medical professional and you are right, invasive substances is what got us here.

My main pointis regarding to everyday triggers that we do not think about, because it is almost impossible for one person to establish causality. I would strongly advocate between a separation of what worked (which usually focuses on specific regimens and invasive substances) and between reporting triggers. The first is usually vague and involves confounding factors, the latter is focused on things that immediately trigger symptoms.

In other words, and for example, I am not advocating stopping avocado, but I am interested to see how people feel about it. If most report similar issues, then we learn something. Avocado is one of my triggers.

I think this survey should be seperate and distinct from what worked and what did not work (which is mostly focused on long term success).

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Also few clarifications, since I have been getting emails (and I do plan to respond as soon as I can):

  • I do not consider my story as recovery, it is an improvement. If I ever recover you will be sure to see a long post by me on that.

  • Regarding recommendations for avoiding toxins: I stand by this 100%, no matter at what stage you are, there is no argument to be made in favor of using artificial substances that have been proven to mess with your hormones. The chances that they mess ’ in a good way’ are minute if not impossible. Most of them are estrogenic in nature (parabens). And I think we should make a list of them.

  • same goes for food that are estrogenic in nature. No one told me that Mayonnaise (which was part of my keto diet) had soy in it! This is just one example. UNless we make a list of these foods, we are continuing to trigger ourself daily, and thus might not recovery. Remember, every little estrogenic substance that harms men over the long term can mess us up 10 times more and 10 times faster.

  • Regarding vitamins, food, and exercise: Here the point that requires a bit of subtlety in line with what Axolot pointed out. There are things you do in the beginning that are in theory good for you, but might be too early to do. Five years ago, I could not do low rep high intensity exercise, I could not take Vitamin D, nor I was able to handle any stress of any sort. Walking used to be the only good thing.
    Now, 5 years after, low intensity exercise is 100% good for me, when I do it I feel better. I unfortunately deal with CPPS before even my PFS, so that limits my exercise capacity. Had I not had CPPS issues, I would be in the GYM everyday, and I am sure I would be 90% by now. It was that good when I was doing it. But again, if you don’t feel good after just stop it, it might not be your time yet to start. But this is not something that if you do once you are hurting your long time recovery, hard to make such argument. …

Hope that answers many questions, and I do plan to respond to the emails.
I am currently experimenting with Vitamin D As I said earlier, long time ago, 2-3 days of vitamin D will help but I will end up crashing after a while, so I stopped it. Lately it has benefitted my libodo with no crash. I just stopped it again because of my damn CPPS, because horniness=sex=CPPS pain.
But now I plan to take it for long period and see whether it benefits without crashing. I am on my first week (since about 6 months) and I plan to continue and will let you know. I already feel higher libido a week in, no doubt…

Bottom line, everything should be done carefully, except for the chemical toxins which should be dropped immediately. My life is much better since I stopped showeing with a god damn body soap that had parabens in it. I used to get numbness within few hours and it took me years to realize the connection. Had someone pointed this out before … That is my whole point…

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Psychotherapy in the form of Cognitive Behavioral Therapy, or Dialectial Behavioral Therapy or Acceptance Commitment Therapy do work for depression and anxiety without taking pills that can create a syndrome just like PFS. Antidepressant drugs are only a tiny bit more effective than placebo–in other words if you believe it is working, it works. But aside from our beliefs, these drugs can damage our bodies, they cause side effects, etc. Psychotherapy obv does not do that to the body.

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