The faster way to find a replicable Protocol

#1

Guys, the point is: you need to take in consideration 3 variable before to give an affirmative answer after any drugs or supplement experiment result to work or no.

1-Do the drug cross the blood brain barrier ( BBB )
2-What dosage was use?
3-For how long was the drug or supplement was taken?

If you don’t keep all the 3 as a record we are going to be running in circle and unorganized

I proposed to set a page in this forum with a format with the names of supplements and drugs, where to keep a log of record of the used drug.
Drug should be used one drug or supplement at the time as a rule to participate, I can’t be a crazy list of supplements or drugs.
We should divide in groups, what drug are going to try by those group, and keep a record of the effect or side effects of it.
It can be posted daily or one a week.
So we are going to gain time with the experimental treatment, also we are going to know the consistency and it is replicable or no.
Or we can choose as individuals what drug you are going to try.

The page should be like an excel format with the names of supplements and drugs. and should be try one at the time, can’t be a crazy mix of drugs and supplement, also the participant can’t be using any diet with potent 5ari, like tomatoes, avocado, chocolate etc…

This is my idea, I will like to hear opinions…

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#2

Somthing similar is planned to be incorporated into the symptom survey in the near future. It will track dosage and result for individual patients. Reports generated from this data are planned for the less-near future.

If a group would like to get together in the interim to do what you suggest, there’s nothing stopping you.
This is the suggested format for people trying different supplements anyways, but no one seems to follow it. That is: dosage, duration, and effect, stated clearly and concisely in the same post .

#3

I am talking about a format with the name of the drugs and supplements (those need to be screened and can’t affect negative 5ar enzymes) so a dedicated number of participants need to completely compromised to take the supplement or drug for a period of the time without taking other drugs or supplement.
The improved symptoms will be in a box checked - negative improve ,+ positive improved, also level improved ,(low, mid, high). Something like that.

No need everyone to participate in.
We can also limit the number of participants per trial drug and also participants should testify the type of drug that was taking before ( propecia, accutane, sawpalmetto.)

But if we don’t do this nobody will do it.

I also recommend that one of the doctor or more than one Doctor that are members of the forum be the organizer or organizers of the trials

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#4

Sounds good. I’m gonna write something soon about my ongoing baclofen trial, because I have some significant improvements.

#5

The problem is we can’t really trust people’s reports. Most people are so easily affected by the placebo effect. Also, people often do multiple things at the same time, or have different baselines of PFS severity. We will also have low statistical power if sample size of each group is low.

A better way to do this experiment would involve conducting rat studies, which would require being able to successfully induce PFS in a fraction of rats. I have argued about this path before. It will require some funding, although not an inordinate amount of money - a couple of tens of thousands. We can raise this amount of money here.

#6

Sibelio In part you are right, but rat will not tell you how they feel or if sleep well the nigh before or feeling a pressure on the head.

#7

No but I don’t think any of the things you mention are necessary to evaluate as long as sexual function is successfully evaluated, as I think most other symptoms of PFS (especially the psychological ones such as sleep, concentration, motivation, anhedonia, depression, brain fog, etc but NOT the physical ones such as dry skin, shrinkage and joint pain) are a consequence of the loss of sexual function. I know many people disagree with this but I haven’t really laid out my theory in detail.

#8

As Sibelio knows I disagree with him about the loss of sexual function being the root cause of other maladies - it certainly isn’t in my case, unless we take the Freudian psychoanalytic viewpoint to it’s extremity. I know for instance a complete loss of emotions which I’m afflicted with has little to do with my loss of sexual functioning.

That being said, I strongly agree with Sibelio about trying to induce a PFS state in rats and then using them to OBJECTIVELY measure improvements. Firstly, Rats aren’t susceptible to placebo effects. People are.
I feel it’s the only relatively safe way we can test substances without putting people’s lives and wellbeing at risk.

As for the argument that we wouldn’t be able to test for parameters such as depth of sleep or pressure sensations, this is true, but these are just some symptoms of a constellation of related symptoms. When I’ve made my temporary recoveries EVERYTHING improved in unison - sleep, libido, erectile function, emotions flooded back, etc.

Similar stories have been reported by others who have experienced temporary recoveries (often through the consumption of anti-androgens).

Thus there ARE parameters we can test for, such as sexual function (mounting frequency) as well as perhaps a few others. We can then assume that they move in unison.

The challenge, of course, is inducing an identical PFS state in rats, not merely a similar state. Monitoring them whilst they are actively taking Finasteride isn’t enough. We need to be able to induce a post-Finasteride state with similar characteristics to that which we suffer from.

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#9

That’s because you don’t know my theory of emotions, which I am working on right now (as in - for publication). I will write to you in private and you will agree with me about this once and for all. :slight_smile:

Also agree that many potential treatments would not be safe for humans. I personally would not like to try things like Triptorelin which some people might have been helped by but others supposedly harmed by. The things that are likely to work are exactly the hard core hormone drugs which are also likely to be more dangerous.

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