Commissioning experienced physicians to provide data on PFS patients

I have raised this proposal in the past, but I will do it once again.

There are numerous doctors such as Dr. Goldstein who have seen possibly hundreds of PFS patients over the years.

They have prescribed treatments and examined the effectiveness of those treatments on patients. This knowledge, I would think, is extremely valuable to both the community, those considering taking action to treat their symptoms as well as current and future research endeavours.

I am truly perplexed as to why The Foundation has not commissioned these experienced medical professionals to provide data on their treatment methodologies, adverse effects of treatment, revision of treatment in light of adverse effects, and final treatment regimens for patients.

I understand that Goldstein, as an example, holds views which many on the cutting edge of understanding of PFS consider to be outdated and not substantiated by the science. For example, I’m aware that Goldstein is convinced that the mechanism behind PFS constitutes 5-ar enzymes remaining inhibited or are in some way damaged or altered. Furthermore, he openly acknowledges that a large minority PFS patients are unable to derive any benefit from his treatments.

I don’t believe that these facts in any way lessens his, as well as other doctor’s utility in helping us understand how patients react to treatments while being observed closely.

Perhaps @awor and @axolotl can provide illumination as to why such data has not been sought from these medical professionals. I understand that they would want to maintain some level of secrecy to ensure that other physicians don’t mimic them, however a monetary incentive as well as a positive image could well change that.

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If I understand you correctly, you’re assuming that the doctors know about something we don’t, and we could all be benefiting if we also knew.

If this were the case, don’t you think more patients would be reporting their treatment successes in this forum? See this topic for example:

You may also search for Goldstein in this forum and the story will not be much different.

The reality is that the docs don’t have a clue either. Some might pretend they do, and some are even making a nice business out of this. It can sometimes get really dangerous if docs start treating patients based on their misguided theory, further hurting patients by giving them antidepressants or other anti-androgenic substances such as tribulus for example, or even performing useless operations. We have such cases on the forum as well, and of course the docs would never admit to having made their patients worse in such an experience report.

One thing that I am aware of that some doctors had success with sometimes is androgen replacement (T, DHT), see

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Hi @awor , why is tribulus anti-androgenic, I was not aware of this.

Thank you!

Yes I tentatively am. I don’t believe it has anything to do with having a theory which rivals yours. I also don’t believe it has anything to do with having widespread success. It’s about gaining data as to what worked for some patients, the level of improvement, and what didn’t work, ideally correlated, to sa,y blood test results and other presentations.

Everything on this forum is anecdotal and entirely first-person. To actually gain insight into the direct observation of doctor’s could be of significant value I’d imagine. It is the same set of eyes viewing many PFS patients. He may have insight and nuance into differentiating the different types of patients. For instance, Goldstein may, over the years, have observed that patients respond best to hormone replacement therapy if they present with x, y and z, whilst it is less likely to work if they present with a, b, and c.

The ability to predict which treatments will work on specific patients (mainly androgen replacement therapies) is something the forum has been unable to establish. Perhaps doctors who do this routinely would be able to offer the foundation, the forum and it’s many suffering patients even the smallest extra bit of information as to what may work for them, before they place their bodies and lives on the line by pursuing, as you mention, dangerous treatments because they don’t know where else to turn.

The Therapy Outcomes Survey has exactly that objective. If enough people fill it out, we should detect a pattern if there is one. Additionally, if we would have more 23andMe data, perhaps therapeutic outcomes could be correlated to SNP polymorphisms.

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https://www.ncbi.nlm.nih.gov/pubmed/25919204

Thank you damn, I read of so many people here using tribulus, thought it would be one of the methods to raise T.

I wish it would go into detail which androgens it reduces.

Thank you @awor !

Tribulus is not antiandrogenic. There are many papers confirming this. It raises T in studies. I have my own personal data as well and it does raise my T and other hormones by about 10 percent.

ive seen mixed reviews of tribulus

some people have gotten worse on it and others do fine.

personally i wouldnt touch it because of that study awor linked.

you never know in our case

Sure, but as we know, many with positive results from treatment don’t return to the forum to post their successes - they simply disappear. This set of patients would not get captured in the survey, compromising the integrity of the data and reducing the useful information captured. The success stories, which Goldstein claims exceeds 50% of his PFS patients will not be fully accounted for.

The fact that any PFS patients whatsoever derive any benefit from androgen replacement therapy is something we would be foolish to ignore, especially in light of the commonly held theory of AR overexpression and a corresponding reduction in signalling efficacy.

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@Sibelio do you know how it raises T is it thru LH or some other mechanism?