Why can't we fund a rat study testing treatment protocols?

General Discussion
#1

The Baylor study we are still awaiting will not be testing treatment protocols, nor am I aware of any other studies that have done or attempting to do that.

Yet, it seems to me that doing a rat study would be a relatively straightforward task. You don’t have to understand the science behind PFS to look for treatment. (It may take decades to understand the science.) Also, it strikes me as a far better option than having people on this forum serve as lab animals themselves, which is what has been happening for decades.

Here is how I envision the study. A big number of rats (mice?) are given Finasteride for a period of time then taken off it (a control group is not given anything). We know they will develop PFS, at least when it comes to penile shrinkage, depression and alteration of neurosteroids. It would be nice if sexual behavior could be measured as well (and maybe this has been done, I just don’t know all the literature).

Then rats are split into multiple groups and each group is given a different treatment protocol, while one group is not given anything to serve as a control. Some possible treatment protocols: 1) TRT; 2) Tribulus + Clomid; 3) Methyl steroids; 4) DHT; 4) DHEA… and so on. We should have a committee, hopefully with the participation of some scientists, decide on what treatment protocols make sense.

Then treatment is discontinued and rats are evaluated and compared to the PFS control group and the initial non-treatment control. We probably need 30 rats per group so if we have 10 groups total that’s 300 rats. It may not have to be done all at once.

Obviously I know nothing about these kind of experiments, how complicated it is to do it, how much money it will cost, etc, but it strikes me as relatively simple to do especially compared to what thousands of people here undergo for many years - crazy protocols, gazillion tests, expensive doctor visits, taking insane amount of supplement, etc.

I think if we clearly outline the study parameters and fund-raise here specifically for this study, we would absolutely be able to raise the money. Also, we may be able to do it in China or India or wherever it might be cheaper to run this kind of study.

So what’s wrong with this plan?

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#2

Why u need rats for this when humans have already tried all these treatment options and results are all over the place…It helped me some but its and up and down thing over a long period of time to see any progress…Rats can’t say much…PFS is a very unique problem with different side effects and different responses to the same treatments based on each individual…

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#3

I don’t mind Guinea pigging anything under minimal medical supervision
I’ve tried pretty much anything and everything else over the years I’ve self injected testosterone taken oral steroids to raise dht
I’ve given the training and high amounts of creatine a shot I’ve tried supplementing vitamins amino acids the list goes on.
I’ve also tried low dose cialis for weeks and high dose cialis on demand the only thing that really works is viagra to get an errection .
I have short term memory issues and anxiety issues and hand on heart know without a shadow of doubt my problems started when I took finasteride.
I think i qualify as a lab rat

#4

I personally think we could either put to bed some treatment ideas if people had clearly documented what they were doing, as they were doing it.

I’d like to see more topics about specific ideas, treated as a semi scientific log.

If people are going to try things anyway, documenting them would be a great help to the community. And if it doesn’t work out and as a result someone tries something different from the list, then we might find something positive to take away from the experiences.

#5

We don‘t know enough about our condition to test treatments. First we need to get closer to the root of the problem so that we can narrow down treatment options. We won‘t even know for sure if rats with PFS-like symptoms have indeed PFS if we cannot identify PFS at the molecular level.

Any „protocol“ right now would be pretty random and without any reasonable base in science, because we don‘t know the target yet.

I know people are desperate for help, but we first need to improve our understanding of the condition. Your proposal may be reasonable in the future when we have a clear target and several options to attack it. At this stage, though, it is premature and would be a warte of limited resources that are better used to investigate the root cause of our Problem.

It would help, though, if the guinea pigs Herr documented their experiments better. We cannot rule out that somebody stumbles upon meds that may help with PFS by coincidence.

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#6

Remember, nobody knows what causes depression at the molecular level, yet treatments exist. I just read an article saying there has never been solid evidence proving that depression is a chemical imbalance. I think there are many things in the medical world that we treat without understanding the medical mechanisms. Treatments that were found through trial and error. I’m not saying its the most effective approach, but it’s one way of doing things.

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#7

This response is absolutely puzzling to me and I am still trying to process it in utter disbelief. Needless to say I disagree 100%. I intend to write a detailed response when I have more time, hopefully soon. In the meantime, I hope everybody enjoys reading and posting in all the other threads on the site, 99% of which are about testing treatment protocols…

#8

You are absolutely right. A lot of medication is discovered by accident. But usually, these accidents occur when a compound is tested for one condition and then they notice positive “side effects” which raise attention for different usages of the same compound. It’s different to the scatter gun approach proposed here.

I am not against experimenting per se. There is always a chance that someone gets lucky (fingers crossed!). And in the past some of the failures have inspired the PFS theory that is currently under scientific investigation. But I don’t think trialing more or less random protocols on rats is a cost-effective use of limited resources. And without a more precise idea of the root cause of our condition, these protocols are fairly random using small bits of pieces. I know Sibello talks about “input from scientists” when choosing the protocols, but the science is not there yet to make any suggestions. We have close to nothing to base any protocols on.

People have been experimenting with protocols for over a decade. And Sibelio is right, most of the talk on this forum is about protocols. Unfortunately, though, so far none of the thousands and thousands of protocols/meds/supps discussed on this forum over the last decade and more have provided any meaningsful relief for a any bigger number of PFS victims. Our track record is absolutely awful. And the track record is bad, because we don’t know yet what we are dealing with. We are basically using a scatter-gun and randomly shoot into the air without knowing what our target is, what it looks like, in which direction it is and how far away it is. The chance is small that we are going to make a hit. We first need to know more about the target, then we can identify protocols and test them (on rats). I don’t know, Melcangi is doing a lot of his experiments on rats. Maybe we can build on that. But right now, I think it is all premature and we need to wait for more studies into the cause of PFS to come out.

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#9

Don’t you think people should be visiting doctors rather than waiting around for studies I know that doctors reactions can be somewhat negative but surely we have a better chance by scatter gunning medical assistance rather than scatter gunning more DIY trials.
Up until recently I thought self Guinea pigging was the way but the more I’ve tried and failed the more it feels pointless but sitting around waiting for studies feels even more pointless.
Surely if more of us sought medical help one of us may find a good doctor that wants to bottom things out ? Worst case scenario we would have medical support

#10

You say this often Baz and unfortunately it doesn’t make sense. A doctor won’t have the answer. Even if they try really hard and are very sympathetic. They don’t have a medicine for PFS to give you or the resources to research it.

Doctors didn’t come up with the modern medicines that are used the world over, scientists in labs did.

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#11

Most useful thing is to support scientific research financially through the foundation and volunteer as a study participant.

What I fear is that some members have the philosophy that life is on hold until they fix this. This is dangerous since the chance of fixing it by yourself is slim, as evidenced by the small number of success stories over the last decade. It would be much more healthy if people would accept that things are on hold until more is understood about PFS via studies. In the meanwhile try to raise your income level, take care of your social life and family etc.

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#12

@Greek Is absolutely right, unfortunately. Doctors are of little help to us. They are practioners of medicine that apply known solution to known problems. They are glorified check-list managers. You tell them your symptoms and in their mind the create a list of potential diseases that may cause your symptoms. Then with tests they rule them out one by one unil they have found your problem. Then they give you the standard treatment for your problem.

Now the issue is, our condition is not part of their checklists. It is not yet an accepted condition. And even worse, there is no known treatment for it. There is nothing a doctor can do. They typically don’t investigate unknown diseases. They are practioners not researchers. And as practioners they apply known treatments, but they don’t develop treatments. Doctors apply known treatments to known problems, but we are faced with an unknown problem with unknown treatment. Doctors are the wrong people to look at for help.

We need researchers to identify our problem and to eventually identify treatments.

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#13

Ok ok guys I get it
Give up on doctor’s
I have to admit I have tried the doctor route a couple of times with little success the first shot got me an appointment for blood tests and the second shot i was told blood tests look ok and I should try Cialis or viagra small doses everyday which didn’t do anything to help but on the upside I did get booked in to see a euroligist in march next year so I’m still holding out for medical assistance to try to get answer’s.
At the moment this is my best chance of getting those answer’s and its the most productive thing I can do for myself and other forum members with the same side effects.
Waiting around for studies isn’t covering all the basics to my mind.
I know my issues all started at the time of taking Finasteride to the point I would be able to trace receipts for viagra starting from within a couple of weeks of taking the first tablet of finasteride up until the last bulk purchase of viagra a short time ago even with this in mind its only right to get checked out medically
We can’t go overlooking that their maybe other issues that may play a part in our circumstances we have to put ourselves through every possible route to medical explanation before we completely give up on medical assistance.
I think doctors are a little ignorant and No they don’t seem to have much of a clue when we tell them our issues possibly came through the use of finasteride but if you don’t ask for help you wont get it .
I wonder how many of the members on this forum have gone the distance with doctors and hospitals ?
Now imagine how they would feel if they waited for studies used themselves as a lab rats and waited years only to go the doctors route afterwards and fined out they had poor blood flow or something else causing the problem.
Only when we have exhausted all other routes we can say that we have to wait for studies.
Bottom line get yourself checked out every way possible I appreciate some have done this and still come back with zero answers but we need to be sure every member does to be on the safe side and to make sure that each member is of good health.

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#14

I suspect that most here have gone the doctor route when they first became aware of their side effects and sadly have come to the conclusion as @Northern_Star says, they are currently unable to resolve our issues. You are absolutely right @Baz44uk that all guys here should present their doctors with their symptoms, not least because this is a medical issue, but as you have mentioned yourself, it also helps to raise awareness within their field that such issues exist. I would also strongly encourage all to fill in an adverse event report with their country’s relevant pharmacovigilance body: https://www.pfsfoundation.org/report-side-effects/ - this is imperative as it is the primary means by which to solicit labelling changes. The other point I would make regarding doctors is to manage your expectations: present them with your symptoms and if useful, existing studies, but be mindful that there are currently no known treatments and also that your doctor may be dismissive of your diagnosis due to its obscurity. This is only a snap shot of this moment in time however and with both the studies and increased awareness things will change. Doctors may also help with symptom relief and also rule out anything else, as Baz says.

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#15

Some great points, @Baz44uk and @Scotsman. Thank you!

I fully agree. While doctors cannot treat PFS directly, contacting them may be helpful to rule out other conditions, to receive treatment for symptoms of PFS (e.g. viagra for ED) and to raise awareness. Hopefully, some doctors will then refrain to prescribe Fin to other patients. The point about filing adverse effects reports is also valid and highly important. Everybody should do this!