Advice for new victims

Choline burned me too

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yes yes yes!!!

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Small point: soy/phytoestrogens seem to have no effect on male sexuality. Phytoestrogens are called that because they’re structurally similar to estrogen, and have been observed to affect the fertility of grazing animals in the past*.
However, from Wikipedia: “In human beings, phytoestrogens are readily absorbed into the circulatory system, circulate in plasma, and are excreted in the urine. Metabolic influence is different from that of grazing animals due to the differences between ruminant versus monogastric digestive systems.”
It also adds that “A 2010 meta-analysis of fifteen placebo-controlled studies said that ‘neither soy foods nor isoflavone supplements alter measures of bioavailable testosterone concentrations in men.’”
And it cites this link: https://doi.org/10.1016%2Fj.fertnstert.2009.04.038

*I’ll add that the idea that phytoestrogens affect grazing animal fertility is also contentious. Those observations were made in the 40s and 50s, and, to my knowledge, there have been no contemporary studies that have replicated these results.

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You should add vaping. I started vaping nicotine a couple months after my crash. The last time I took a puff and crashed again mentally. Never been able to fully feel pleasure since.

Why NAC?

NAC is (N-acetil Cysteine)

I think for some it’s symptom specific on why you would crash on specific supplements as well. I’m not saying to play with fire, but maybe slowly introducing things before ramping it up too high might be option.

For me I do well on zinc, when I just start I get solid hard ons and morning wood, but after a while I crash. I recently read that 50mg was too high a dose, you want it around 10 to 20 mg, I’ll test it.

I would love for the PFS foundation to solve this, but it could be a long ways away.

I’ll just say be careful with anyone who wants to try things, because we don’t know how our body’s will react. If you try something keep a journal and start with low doses.

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Thanks for you response RR3, I agree to be carefull.

The list in the original post suggest that there is a reason to believe that each supplement on it is dangerous for us. Whether it are scientific studies that show that it is a 5ar inhibitor or one or more user experiences. For most substances on the list I am aware that these are dangerous for us.

But that NAC is dangerous for us is something i am not aware of. So my question is, what the rational behind it is? Is it a 5ar inhibitor or anti androgen substance? Are there studies that showed that? Did on ore more people crashed on it? What is the reason it is on this list?

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I really don’t know why NAC is considered dangerous, I used it before and it didn’t have an impact on me one way or another.

@Apr1989 actually got well from cycling tribulus, but it might be something we need more information on, as each of us are different.

I’ve actually felt on okay on a low dose of clomid, but I can’t get it prescribed to me long term and it’s probably not ideal for it to be used long term.

This is one of the toughest mysteries to figure out. For me I know if I can get my T up I’ll be okay.

If everyone is different, does that mean you should try it and see what happens? I am not considering myself a laboratory mouse. Unless you have hard proof of why this is good for some and bad for others, you better don’t give opinion on that topic mate. I can come up with the talk why would you blame Fin, many people have good experience with it?

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Our bad react on Finasteride, Accutane, SSRIs etc… Is the proof that our bodies can’t tolerate hormones manipulation. Why we should play manipulate hormones again, using supplements and drugs?

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Exactly!

Unfortunately I understood it too late, when the damage is now irreparable. I will end up as Douglasmich, Konflict … However, I hope that this thread will be kept alive, even when I’m gone, so as to save some human life. Unfortunately, it is full of posts from people who take absurd substances and claim to be cured. This is very dangerous, because, in desperation, someone could try to imitate them. I did so. @tisho1012 , please try to spread this thread. I wish someone had already done it and I had read it before that.

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I think the Moderators have to take care of that, as this is really getting ridiculous… How can someone preach not to eat this, not to eat that, as it is inflammatory or 5AR inhibitor and at the same time loading up with shitloads of herbs and vitamins, chemicals and drugs, I mean WTF? I am on the same boat as you man, so Demon is and others too.
As far I as what can I do, I will counter every post I see when some smart guy try to give an advice about PFS and how to cure it.

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My mental sides are very very bad. I can’t drive anymore. My derealization is over the top.

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Sorry to hear that man! Have you tried fasting?

I’m 50kg x 1,68m. If I fast, I disappear

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Do you eat everything at the moment, like before?

Yes. I tried low carb diet, but didn’t work on my condition

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I had issue with the low weight too man, now got back to normal so I can do fasting once a week…

I really do see your points, but this is not so clear cut. Trust me, I’m equally annoyed. I’ve written thousands of words on this (@tzinkman can attest) addressing what an absolute dereliction of duty it is for the medical profession to leave people in a completely unsustainable situation that often leads to desperation-induced risk due to the unrecognised severity of their physiological problems.

We make it absolutely clear on our site that there is no known therapy, we do not endorse the opinions of members and that assertions by people on this or any patient platform should in no way be considered medical advice. Although it’s unfortunate that some patients with functional symptoms want to play doctor, we have addressed this as best we can with a (often resisted) policy of not allowing users to make or share definitive, diagnostic or prescriptive statements. We are going to be moderating slightly more strictly as we shift into outreach and further networking with scientists in the new year, as time is up on that and we need to take the issue to the next level now our projects are reaching fruition.

However, it has to be noted that this is not all these therapeutic reports are. Many people are genuinely modulating their symptoms significantly with the same substances that are causing often persistent harm in other patients. These reports make theoretical sense, but above all, provide crucial and demonstrable data, which is a key practical benefit of providing this forum. Despite individual patient inferences, what they took and what happened to their symptoms is important to record. We have a system for doing this more effectively now (although the result system is yet to be built).

The problem here partially lies in the fact that people will arrive in distress, begin searching for keywords about cures, consider a weighted selection of reports that often coincide with a paragraph “theory” and then start ordering things. It’s usually only after they have quite a bad reaction they get to grips with the vulnerability that a lot of patients, particularly ones who took it for a very short time and wound up with severe PFS, experience. There’s very little we can do about this besides not letting patients speculate or report their therapeutic attempts, which is not reasonable. Ultimately, we can only do so much.

Something to consider might be a serious adverse event reporting log topic in which you request only posts reporting significant detrimental impacts from therapeutic attempts, summarised clearly without further discussion or speculations. That would allow for easy cataloguing and linking to posts you would like to raise with others.

Best regards

axo

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