Passing on more credible theories to Harvard, Baylor

General Discussion
#1

I’ll probably get slammed for being a homebrew scientist or something for this, but why not.

What’s everyone’s opinion on this?

Would it be a good idea to ask the PFS Foundation to compile a list of some of the more credible/scientifically or tested theories on here and send them over to the research teams at Harvard and Baylor? I know these guys are miles ahead of us in terms of scientific/medical knowledge, but surely it would give them a good starting point in terms of what’s wrong with us?

For example, I see a lot of posts about the connection between our condition and cortisol. Likewise with adrenal fatigue and thyroid problems, which seem to be a common thread amongst a fair few of us.

Also, protocols like dosing progesterone (which regardless of how you feel about it, has actually helped some people and caused a strong reaction, so you know it must be touching something) could be discussed?

Call me a dreamer, or idealistic, or naïve, but I think this could help in some way.

Queue the negative backlash.

#2

I think they are collecting datapoints and then formalte theories based on these datapoints. Theories on this forum probably are not very helpful in this endeavour. Maybe awor can comment.

#3

I think we are all hoping for something more concrete. Years of theories here haven’t gone anywhere. We need to know exactly what is going on. Clearly there is a lot more happening then can be easily explained.

#4

AWOR??? More like AWOL

He’s hasn’t posted here in years

#5

haha, what’s his story? recovered?

#6

I think its a really good idea. Yea they are the experts but we are the ones living with these symptoms so in a way are opnions count for more than you may think

#7

I don’t necessarily even mean theories like leaky gut, etc, but what about some of the stickies that are around that cite studies, or alex miller’s theory about the potential damage to our CNS? obviously progesterone has touched on something with certain people, we just don’t know how or what to do with it.

I dunno, they’ve probably got it all covered anyway and I appreciate everything they’re doing.

#8

Think about it. The first Italian study showed low allopregnanolone. Progesterone is a precursor hormone to allopregnanolone. So if someone felt better its possible most of there issues were from low allopregnanolone. The problem with taking Progesterone is it converts to other things also that make PFS worse. The researchers don’t need us to tell them what to look for anymore. They have a clue. I suppose the real question is can it be treated or fixed. We just need more guys to get to Baylor to compete that study. Harvard is already done and will publish this summer.

#9

You guys are not looking deep enough, allopreg, preg, cortisol, 3adiolg, dht… what do they all have it common? 5 Alpha Reductase. Why is the enzyme/hormone metabolism not having been restored? It’s all pointing to something deeper on cellular level (receptors), and perhaps genetic… these are things they are going to look at.

#10

If someone would just look specifically at antibodies against the 5arll enzyme or DhT and other metabolites that were inhibited. This is one of a limited number of theories that make sense.

#11

I have zero doubt in my mind it can be treated or fixed. I feel everything still working the way it used to underneath all this B/S, and I’ve got maybe 40 per cent better in 16 months and continue to get better all the time. so there must be an answer, just a matter of time is all.

and Harvard is out this summer? I spoke to Philip Roberts the other day and he said it would be out end of the year. your summer would be awesome though.

#12

Not necessarily.

What is the advice given to users on here to avoid a possible crash?

  1. avoid excessive ejaculation
  2. avoid drinking
  3. avoid stress

How are any of those things going to influence a mutation or receptor sensitivity? They stress the nervous system. Just like going on or coming off of the drug does.

The nervous system is left in a state of limbo preceding a crash and any of those things can send you over the edge into complete dysfunction. If anything I hope that the researchers will rule out AR insensitivity and mutation. They should be able to if neither of them exist.

#13

Agree that mutations need to be ruled out. The SRD5A2 gene is the gene that encodes and controls the function of the 5 alpha reductase type 2 enzyme. Mutations in this gene are found in people who are born with 5 alpha reductase disorders.

I wonder if although we where not born with a mutation to this gene if we suffered some type of mutation to this gene after inhibiting the 5 alpha reductase type 2 enzyme.