Hey Bill, I am advocating 1 long term protocol for everyone, right now we are trying to figure out one protocol for each person, I have already found one that has reversed 90% of PFS in myself and others are starting it.
Join our thread here
solvepfs.com/viewtopic.php?f=6&t=161
It is about bodybuilding and PFS, perhaps you can contribute to our discussion there.
This thread will continue here
solvepfs.com/viewtopic.php?f=6&t=152
We are moving into advanced stuff and we need to keep propecia help for studies and the foundation, and solvepfs for discussions on solving PFS, 2 different angles, same cause.
$15 dollars donated, keep this going everyone.
PVDL- let me ask you something. I am one of the āluckyā ones who has improved greatly in the last 2-3 years. Had numb penis for almost 2 years!! No real change, then time went on and senstivity came back, sexual thoughts returned, dizzyness went away, energy increased etc. Maybe Iām 70-80% improved from the first horrid 2 years (I believe it hasnāt been 2 years for you yet)
Sooo, I am clearly getting better and better. So why the fuck do you get to deny me the opportunity to take stuff, or learn about hormones, learn about different protocols that I may or may not want to try?
Why do you get to make the choice? If you were getting better and better maybe the studies wouldnāt be your top priority? Or even if they were, maybe you would be curious to find something that helps the recovery along. Because you are in a desperate spot (I get it I was once there too), why canāt you see many of us arenāt as bad off as you.
pvdl is right about one thing,the studies and the foundation are obviously the most important things,i donate every month and have done from the start,but, if jqd can find a way to make us feel a lot better in the meantime im all for it,i would give anything to feel a bit of normality,to feel some sexual electricity between my legs and in my stomache etc,i notice you have only just crashed recently pvdl,i am entering my eighth year of pfs,i have been a sexual zombie for 7 years,surely you can understand how desperate these lads are myself included,maybe in 5 years or so when you are still up shit creek and theres yet another round of studies going on and stilll no cure youāll think a lot differently about trying to cure yourself etcā¦
Thank you very much for your monthly donations. These studies are relatively new. Just a few years ago there were 0 studies on pfs. The foundation only exists since 2012. These elite institutions are only involved since October 2013. The more we know the more effective even theorizing on this board will be. Right now its complete homebrew.
Btw, the likelyhood that JQD will find a way to make you feel alot worse is far greater than the likelyhood that he will find something to make you feel better. Basically everyone will either feel worse or unchanged after JQD protocols.
The recoveries have one common element: TIME! Everything else is conjecture.
The studies ARE important. Thereās no doubt about that. I plan to begin donating this week.
However, I donāt think it makes sense for us as a community to stop investigating different avenues of treatment. Doctors are motivated by money. Thatās a strong motivator. But what is a hell of a lot stronger motivator is feeling sick and shitty every day. Desperation will make someone work 1000% harder than someone who is just looking for a paycheck at the end of the week.
Some of the guys on this forum probably know more about our particular area of endocrinology than a lot of doctors in the field.
I canāt sit around and hope that an armchair scientist will stumble across a cure in the next couple months. I need to do my own research and figure this out on my own. Iām not waiting around for a knight in shining armor to come and rescue me. Iāll be 6 feet under by the time that happens.
Now, if we could find an endocrinologist who also had PFS. Thatās something Iād be willing to back by a buck.
Definitely hornier today. Sticking with 0.5mg Arimidex EOD. When I left heavy at the gym, I notice it tanks my libido. Havenāt lifted since Friday. Will today. Start T Prop shortly. Boners are definitely good on Arimidex. Itās definitely helping me.
You do realize that many people working with the foundation (awor) are suffering from PFS? The guy who initiated it, is the farther of a kid who commited suicide because of PFS.
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Why donāt you take time to actually try some protocols and you will so easily see the right ones make significant difference. Who has given you the idea that thereās nothing that will make a PFS sufferer feel better?
LOL I know it a terrible thought to wish this syndrome upon someone but I have said that before. We need a endocrinologist to have the same or similar abnormal recation to a DHT inhibiter that we have!!!
That would help us greatly, especially if the doctor was honest about it.
FYI about DHEA, Mine is high without supplements ATM. Here is what Jacobs said about itā¦
āThereās alot to discussā¦your high DHEAS requires explanation. It is a neuroactive steroid that is anxiety provoking in the brain. A condition called late onset congenital adrenal hyperplasia can cause this. This is independent of the PFS question. As for the HH, I would start with Clomid therapy +/- aromatase inhibition to try and correlate your symptoms with your Bio-T and estradiol levels.
Alan Jacobs MDā
He has absoluty no clue of the variation and breadth of PFS.
Who? Jacobs?
To be fair he knows far more than you or any other unqualified online pfs prophet. Which isnāt much but that is why we have studies.
There is no way he has not seen the full spectrum of pfs devastation given his ātreatmentā of so many affected by the drug.
Are his treatments effective and reliable? No
Does he advertise success in āimprovingā patients? Yes although you state improvements are likely without intervention.
At least he is trying he just doesnt know what he needs to do so treats pfs as a basic hormone imbalance. Which it is not.
I am no longer posting on this forum, but I wanted to get a message to Mew. I think there has been a misunderstanding, my theories do not conflict with Mewās theories and speculations about the 5AR being defective or inactive. I never theorized about the actual mechanism that is causing the problem, my theories are merely what occurs after the problem exists. They are designed around my experiences in treating myself and observing others with the condition. I fully support the research that is going on, as I do not know specifically what the cause of the damage is. I can only theorize, and I do believe my theories are correct as to what is going on with us after the damage, my theories are rather simple. There seems to be some confusion about what my theories state, it is imperative that we support the research studies and Mewās work. I have moved to solvepfs.com (per Mewās request) to organize a group to start testing real treatments. It is only for those who are interested in taking measures to try and resolve this condition, there are many guys who are suicidal, and if you are on the verge of killing yourself due to no options, you should at least have these options available. It is our hope to get doctors to work with us, to conduct studies, to have options for people. Options that include hormones, body builder hormones (if need be), synthetic 5AR enzymes, HDAC - Trichostatin A (TSA) (increases 5ar in the brain to treat Parkinsonās), we will work with labs, scientists.
Maybe we will solve this, maybe we wonāt, maybe we will find a way to reverse 50% of the symptoms in some guys, maybe 25% in others, maybe 90% in some. One thing canāt be denied, our findings will not be useless to those studying PFS, join us at solvepfs.com. All protocols are welcome, the theories section here will be closed soon, I encourage you all to come and start a thread. Document whatever you are doing, if you are doing nothing, come and start a thread and document your progress, this will help researchers, we want our site to be a resource. There are some here who are doing nothing, we would like to see your documented progression so that we can compare it to our own.
See you at solvePFS.com, and thank you Mew for all the work you are doing, please donāt take it personal, but there are many of us who might become suicidal without options. I know first hand that we respond to hormones, it is just tricky, and we are working on protocols for non responders, all guys are welcome. There will be no attacking or insulting allowed at our forum, that is what will be different from here.
Thanks all!
Complete and utter nonsense.
Scientists are already working on the problem you NUT! No need to start a homebrew group, which ruins the health of the members even further. Your treatments have no scientific basis, have been tried for the last decade and wont achieve positive results.
It is a utter distraction, money and time are wasted.
You do not support the studies, as you believe that real scientists are less effective than working with EDEN on nonsense.
You do not even know what you are talking about.
There is no need to start a āresearch groupā. Scientists are already researching. They need our financial support and active participation.
I have been using the DHT gel for 3 days now along with a bio identical Testosterone Cream. Last night I wasnāt able to piss very easily. That has never happened to me before. Without testing I would assume that my DHT level is very high now. Prior to starting the Testosterone Cream my T level was tested in the mid 300ās and E2 was 14. I started the Testosterone Cream for about a week then added back AI. I think it was to soon to add AI back into the mix because I felt pretty terrible after doing that. I contacted my doctor after doing this to myself and got a T shot. This quickly brought back my E levels (by feel). I havenāt been able to correlate any PFS symptom relief with E2 levels high,low or medium. When its to low I feel joint, hip, and bone pain. A normal reaction. When it goes back up these symptoms go away but I never hit a āsweet spotā in terms of libido, numbness, or brain fog. The creams/gels supposedly have a higher conversions rate to DHT by themselves. The only positive thing I noticed was increase energy after adding the Testosterone Cream but I had experimented with AIās prior to taking the Test and was really fucking myself up. My use of AI prior to Testosterone Cream took my E2 down to undetectable levels and I was hardly able to stand up.
So in short I feel like shit when E2 is to lowā¦ If its neurosteroid estrogen then a regular AI is not working for me. I get a normal guys fucked up reaction from Low E and still have all my PFS issues. The increased DHT has not help in a positive way yet either. The typical negative shit canāt piss.
I know JQD is going to say this is not his protocol but the basic concepts are there. We have all been talking about low doses of T and keeping E low ectā¦ So yes, cream sucks but its very likely a low dose and daily. I am sticking with the program but I have such a negative reaction E2 is low and I cant tell much beyond that.
Your experiences with testosterone and AI usage has been exactly the same for me.
What dose AI are you talking about when you said you added it back in a few days after starting testostetone?
Even though I have not tried DHT cream yet, when I took DHEA at 150 mg per day I felt as if my prostate was growing as well. The way I figure it, if you are going to stay on the DHT cream and if you continue to feel like your prostate is growing along if you do not have complete urniary retention which is complete ability to piss Iām sure you will be fine. Itās prob a good ideato confirm this with a urologist that your prostate is not in such bad shape that you need to worry about urine back flowing and staining the kidneys.
In other words a little prostate enlargement and feeling that when you piss canāt kill you. But seeing a urilogist and getting a Psa test and possible a prostate exam and real advice is prob a good idea. Other thing it will do is confirm the dht cream is not making cancer grow faster or somthing.
Remember after DHT inhibiter usage we are all at a higher risk of high grade prostate cancer!! Somthing to keep on mind.
Studies show us guys who used DHT inhibiters can have prostate cancer but still normal psa levels!
Which means prostate cancer can be harder to catch early in us. With that said I go on the side of being paranoid when it comes to prostate stuff
The above posts clearly demonstrates why this homebrew bs, is not only unscientfic and distracting from the real path forward, but actually out right dangerous.
You dont play around with your hormones like crazy. LET THE BODY FIGURE IT OUT! The body needs to heal itself. Thats the only hope you got. To support it, stop taking toxins, like alcohol and drugs and stop playing with your hormones. If you want some āhomebrew programmā, go lift some weights and eat healthy. Also dont expect improvements to happen overnight. You measure progress in years not days. All recoveries that were not immediate (2 weeks, non PFS case), took years (2-8 years).
Meanwhile participate in studies and donate. If they identify a cause, and have an idea how to cure it, then its time to swallow even harsher medicines, because then you know that its backed by scientific research. JQD is not a scientist. He knows nothing. He sits in his basement and guesses. Absolutely no foundation for any hormone treatment.
Its simple, but I guess humans always see causality where there is only correlation, thus the thousands of threads of different vitamins, pills and hormones one should take.