A good question. I wish I knew… I know with one of my recoveries (Dec 2017) I was with a friend at a Lebanese restaurant and drank a few cups of aniseed tea, which I’d never had before. Within an hour I felt sleepy and then much better. Lasted for two days. According to my research aniseed, like licorice may may have mild anti-androgenic properties. Whether that was enough to bring about a recovery, I don’t know.
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I got pfs from licorice extract, its very potent.
Interesting is that antiandrogens kill us. And on the other hand low dose or weak antiandrogens help us getting better.
It seems that the AR theory is somehow right.
You need to reduce your androgen level a bit in order not to attack the AR. If your Testo and dht levels decrease, AR could reopen.
I would do some cycles with that tea. Forex drinking in the evenings or before bed for one week and stop for one week or drink it every second day. You could experiment. What about that? Important could be to use weak antiandrogens or potent at smaller dosage. I have read lots of succesful stories taking at a low dose (prog/ldn…)
I got better on clomid and even more so on trt…Then had to stop…so IDK…
There will be no cure soon.
That’s my statement which reflects my own personal opinion.
The real question is what to do while there is no cure.
Several options are:
A) You spend your money chasing natural cures going down one rabbit hole after another, hoping for the best and perhaps spurred on by a new helpful friend who tells you there’s a cure and they know the answer.
B) You can pursue your own methods devised from your own research that’s not clouded/tainted by the above.
C) You get on with life as best you can and save your money so when medical research makes a break through you have the savings to fund the new treatment and finally see an end to PFS.
When option C arrives which I believe it will, make sure you are financially prepared and haven’t spent most of your savings on option A or B. Economists/traders believe we are coming to the end of the current bull market and this will be met by a severe depression that will hike up inflation, increase the cost of living and cause further job losses. Being sick costs money so is your job recession proof?
In this interview Schiff mostly addresses the future of the US economy with a worst case scenario but he makes some good points that we should be aware of and question our future plans.
Yes but if we don’t help fund research there will be no cure. Just a small monthly donation. Everything helps.
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The problem with option C is that you are waiting for someone else to commit time and money to find a cure. That’s not going to happen. Let’s face it. Medical research largely does not even recognize that our problem exists. We have to fund the initial research to show that “PFS” exists as a condition. We have to show that “PFS” is connected to “PSSD” and other similar conditions to increase the affected population and make our problem more relevant. We have to show that “PFS” is connected to androgen receptor function which may be relevant to prostate cancer research to make our problem more interesting for researchers.
We have made progress on all these fronts over the years. But it took a very long time. Awor has written about all that over ten years ago. How much longer do we want to wait? I don’t want to be in my eighties before I get better. The time is now. Everyone needs to help. We will have to fund research ourselves and promote our cause until our problem is big and interesting enough to attract more interest (and grants) from public institutions, research and/or pharmaceutical companies. It’s not going to happen on its own. It’s on us!
That’s why everyone should donate to the PFS Foundation, participate in PFS studies when they recruit patients and file adverse effects notices with their regulatory bodies.
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Option C is exactly the idiocy that will result in no progress being made over the next 10 years. We have to fund research period. No one will do it for us as no one is convinced PFS is real. This attitude, which reflects a free rider mentality, will result in us posting here in 10 years not any more knowledgeable than now. Again: The donations have to go to the foundation and everyone needs to set up a monthly donation schedule! Once this community proves scientifically that PFS is real conclusively and in detail the floodgates re funding will open. If we fail to do the above we will be chasing after the latest homebrew nonsense in 2028 like desparate morons. Lol.
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Out of curiosity is there some sort of fundraiser we could do? As a community or something? I’m sure there’s many ways we could raise money faster and get the ball rolling quicker.
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Yes, as @awor has posted we are working on it. But unfortunately as you may have guessed there’s a lot of work for the pair of us to do on numerous projects, so sit tight and just put the pennies in a jar for now.
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Oh my apologies, I must of missed that post or forgot, that’s great news anyhow.
np, was in the site feedback thread here:
Maybe it would help to get more people involved. I know it’s not easy. You need to get people up to speed to whatever it is that is going on behind the scene, people might need certain skillsets, and, obviously, you never know how reliable people are. But maybe it could help to let people know what skillsets/capabilities would be useful to support your efforts.
Two of the projects seem to be the integration of a donation button (your quote of Awor above) and the 23andme analysis. I guess the former will require some expertise in the coding language, while the latter will require some advanced statistics skills. Anything else?
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Very good post. I support that.
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Yeah, I get you and do understand.
Well, I can tell you said button took no time at all, just got to sort out the other side of it, lol. We have a good coder helping with custom integration of a different project, and hopefully @Ghost will be interested in working with @awor and I regarding the 23andme stuff you mention. As to other projects, there’s just lots of difficulties as you guess. There’s things people can’t quickly get up to speed on, things that aren’t public, and just things we need to do personally. We are of course very gratefully helped by the mods, the new accutane mods @pete and @Dubya_B, and of course you guys posting, interested in supporting the community being together and being kind to each other. I’m sure in the future there’ll be projects that can be planned at a more community level so others can contribute their skills as you mention. That would be good.
Quite soon there’ll be a project everyone here can easily contribute to that will be helpful, promise.
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I’m taking clomid and arimidex for the past 3 weeks every other day. My testosterone level was in the low range and my estrodial was higher than the top limit… I’m hoping I can balance them back to normal though not sure that will really help my lack of libido, and erection issues
I think I may have had a similar experience. I had a few days of considerable improvement seemingly out of the blue. The only thing I could relate it back to was that I had been drinking large amounts of nettle tea in the days leading up to it. From what I’ve googled, nettle tea is anti-androgenic, in the same way that aniseed tea is. Some kind of hormesis perhaps?
I agree with the idea that we should find a unifying name for the problem. In fact, I feel like that might even have been the best first step in the entire process. In order to be recognized, we need to have a name. If we don’t even have a coherent name then we will never really be recognized. I support “PEDS”.
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I agree with the idea, too.
But First of all, We have to get a scientific evidence to support the rare disease.
so, in this time upcoming study is very significant to make a huge step. Make a monthly donations is a good option I think.
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Any updates from Awor? Been 2 years since that statement.
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