I got almost every symptom and then some.
Iām not concluding anything and am actively trying to learn how to solve my own adrenal issues. Just saying itās likely not the root cause of PFS, but obviously something if you suffer from should look at treating.
Iām interested in how people would respond to hydrocortison, and I know Enden is using it, but personally I donāt think itās worth the risk.
If you believe itās something that could help you, then Iād definitely encourage you to explore it further.
I just did the spit tests so now I just wait to seeā¦ TRT has help me some. Its no silver bullet but my body no longer feels like its falling apart. I been on it for almost 3 months. I will get some follow up bloods here in a few weeksā¦ I will post it. Along with this cortisol test. In some ways I have to agree with JQD. Fin has caused multiple systems failure in the body. The only way to attack it is one thing at a time slowly and watch for subtitle objective improvements. If its an enzyme conversion issue then carefully supplementing each deficiency should bring some relief.
Aside from that if we objectively look at what has been found in the studies and what they are continuing to look atā¦ Please correct me if I am wrong. (I want to be wrong here.) Low neurosteroids , tissue damage , and neuropathyā¦ If this is the calling card of this disease, no one is really getting much better. The brain may just be adjusting to the new chemical environment and some forgetting of what life was like before. IDK
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A member of the Italian study has said that the researchers there think the opposite. That there is no permanent damage. They also think that if their current theory is right (5ar methylation) that people should see improvements over time. Apparently they have noted a few recovery cases as well, but who knows.
From the tone of the poster, the researchers seem quite excited about their current theory. But I would like to get that information from them myself.
I agree that finasteride causes multiple disorders in the body, problem is they are all interdependent so I donāt believe you can specifically target one area and cure it. The adrenals might be fucked because of a hormonal imbalance upstream. The hormonal imbalance may simply be a result of dysfunctional enzyme. That may be because of a faulty gene etc. etc.
But I share your worry about adapting to the illness rather then a full recovery. This is what I believe of the instances of cures, and why those who post them are so evasive about specific details as to not doubt themselves. Maybe the body does return to baseline after a long period of time, but how do you know what the baseline is after a decade?
The researchers are right. There is no permanent damage. Long lasting and persistent
Yes Bens, as I have been saying, itās is a self limitng syndrome.
What do you mean by self limiting?
Basically a with regards to science and medicine, a disease or syndrome that will resolve on its own without medical intervention. Now of course thatās significant information. However the problem is why so many have lingering issues years and years later. Thatās the real problem
Tell that to my nuts. LOL!!! Hey nuts your self limiting meā¦ Please produce some bio-available testosterone ASAP! Oh and someone tell my blurry ass vision and dry eyes that there is no need to be concerned. Honestly the vision issue is a tellā¦ You are right but probably not the way you intendedā¦ A large majority of PFS is neurological damage. There is no medical intervention available and probably never will be. So it either resolves on its own or it doesnāt. The sleep problem is the same dealā¦ Its neurological and it either gets better on its own or not. There is not a single thing you can really do to make it better. Thatās why sleep studies and drugs fail to help in any significant way.
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What?
Stop speaking with so much authority on what PFS is. It might be what you suggest, but you can never be sure. Also you cant be sure if it cant be cured. I believe eventually, scientists will figure it out. Even if it is too late for us. Your rants are not helping guys to keep a cool head here. We need to stay rational here and continue support the studies and foundation. Exactly these rants result in people running around like scared chicken reverting to the latest homebrew messiah. So calm down.
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Are all these things a surprise to you guys? Emre has the worst case of visual sides I know of. Sorry to burst your bubble guysā¦ My wife is an eye doctor and the only thing that can cause issues like this are neurological. Like I said, they either get better on there own or not. No medical intervention because the technology doesnāt exist. I have them also, to a lesser extent. If you guys do not have them, good for you. Iām sure it helps contribute to your overall positivity. Seems like its convenient to ignore people like Emre and get pissed off at JQD. Emre is the example of how really fucked we truly are, so ignore his posts. Get angry at JQDās posts because he responds to everything and maybe just doesnāt have PFS as badā¦ Seems to be a theme. Like I said I would love to be wrong but Iām not stupid. You must put yourself into a state of denial to live through this. Simple as that.
PVDL- I will say whatever the fuck I want
mci, when I first started browsing here after my crash some of your (and othersā) posts pretty much sent me into shock. They donāt bother me any longer as I now realize that youāre just a pessimist with no clue who needs to rant, but be mindful of the fact that people do read your posts and you may even contribute to suicides with the āweāre all doomedā āthere will never be a cureā āwe have permanent brain damageā conjecture you write.
Yeah, I tend to agree. There are too many objective markers for improvement for us to attribute recovery stories to people getting used to symptoms. I would actually say that most of my symptoms can be assessed objectively.
I do wonder though if recoveries are partially the result of a compensation rather than the actual pathology going away. For example, increased androgen receptor expression, etc.
Lol, I was speaking to mcibofh
Mcibofh, just last month you were harrassing JQD. Now you defend him. How anybody can take your rants seriously is beyond me. You speak with authority on PFS, even though you have absolutely no clue what the problem is. Its conjecture at best. Even if it is what you suggest, your crazy rants are not making any difference. You basically will make people go nuts, and start buying the latest homebrew recepies. Never mind the foundation, after all its not solveable via science and the ātechnology doesnt existā.
You are bascially an undisciplined and very fearful guy. Just admit that to yourself. I can tell you that most people on here have very similar or worse symptoms than you. However they dont go on these crazy rants, because its just an emptional outburst that leads to nothing. Even though I dont want to engage in theoretical debate (as I am no armchair scienist and know that even regular doctors have no clue about PFS), numerous people have done brain scans, and the results have come back negative, with no abnormality being detected. Of course that doesnt mean much at all, as the scans might not be able to detect the damage inflicted. Either way, the path forward is clear: Reasearch and donations to the foundation. Your rants distract from this rational path, as they are emotional outbursts that will either lead to people committing suicide or desperatley following homebrew.
You guys are welcome to believe whatever makes you feel better. You guys choose to ignore posters like Emre because it scares you. My posts should scare you also. I was and still am very messed up. There really is no good explanation for some of these severe symptoms other then neurological damage. If you donāt have them I suppose its easier to live in denial. I have been impacted in just about every way possible and more. I am not looking for anyoneās approval here. I am not trying to encourage suicides, however I would understand why you would choose this.
As far as defending some of JQDās statements ectā¦ You guys are not correct in assuming a hormone protocol will not help some people. Its not āHome Brewā if you have blood work that warrants this intervention and its administered by a doctor. You do need to keep your expectations of any treatment low. You need to evaluate yourself based on the new you and not the old you.
BTW: Bens, Emre only took 4 pills, like you. There are other people that took less and have issues for many years. So lets do the math here. These are not side effects. Its not a persistent annoyance, its real damage. How you decided to deal with it is up to you.
Nobody is in denial here, except maybe the homebrewers, who think that a quick fix can be found on a supermarket shelf. I am fully aware of the possibility that the damage inflicted might be neurological, however I cant be sure that this is the case.
The problem with your emotional outbursts, is that they destract from the rational path forward: Studies and donations to the PFS foundation. The reason for this is that you basically want everybody to freak out and panic. If everybody would do this, a long winded study would hardly be on their minds.
To say that people who dont freak out and panic, and write long rants like you do here, are āin denialā is somewhat ironic. I understand the urge to stay in panic mode, as it makes you feel like you have some control and can change things. Acceptance in this case feels like defeat and feels like this stuff will be permanent. So one could argue, that you are āin denialā, because through panic you push off the acceptance phase, which would be a harsh confronation with the permant new reality of sexual and other forms of dysfunction caused by this disease.
Anyway long story short: I would advocate everybody to reduce the number of rants posted here, as the more cool headed we all are the quicker we will progress towards a solution, which in any case will take a long time to materialize.
I think we will eventually all learn to accept the current situation and hopefully make some minor to major improvements if possible. In the meantime, lets try to calm down and set up monthly donations and try to participate in studies, especially when they are near us.
Nodoby is expecting that we will accept/ learn to live with the new situation immediatley. But over time, we have to adjust to new realities successfully. After all, many humans throughout history have done this.
Greetings.