Re: Cure for PFS
u/drwillpowers
r/DrWillPowers2026-05-01T14:09:08Z
Dr Will Powers’ own statements and theorizing
Mentions treatments or doses — not guidance
Summary (paraphrased)
Powers laid out three PFS phenotypes and their prognoses: the neurosteroid phenotype, which he considers recoverable in almost all cases since he has never seen anyone permanently stuck in it; the "melty" phenotype of skin/connective-tissue damage, where he says he has already reversed hypermobility and connective-tissue/cortisol problems in patients (though severe scarring such as facial striae is probably only improvable, e.g., with laser), while the cortisol feedback-loop problem is breakable; and androgenic silencing, which he believes is fixable whenever a "window" can be achieved, being essentially a metabolic trap or self-reinforcing feedback loop. He described his then-current cure theory — drain every androgenic metabolite from the body, track 3A-ADG and other labs as they fall, and let the system fully reset — saying he would know in 4–5 weeks whether it works, while flagging epigenetic reprogramming during the state of cellular extremis as his main concern. He stressed PFS is never truly "curable" in the sense of permanent immunity: the vulnerable genetics remain, so a sufficient re-exposure could restart the loop — likening it to a managed seizure disorder, where knowing one's triggers prevents recurrence and the person otherwise feels as they did before 5ARI exposure, without the windows-and-crashes oscillation.
Key points (paraphrased)
- Three phenotypes: neurosteroid (recoverable), "melty" (connective tissue/skin; hypermobility reversible, severe striae likely permanent), androgenic silencing (metabolic trap; fixable via a "window").
- Cure theory: total androgenic-metabolite drain with 3A-ADG monitoring to allow full system reset; epigenetic reprogramming the main worry.
- No true permanent cure: susceptibility genetics persist; re-exposure can restart the loop.
- Managed-condition analogy: like a seizure disorder — learn triggers, avoid them, feel normal otherwise.
Why it’s in the corpus
The most complete prognosis/taxonomy statement in this chunk (highest-scored comment here, 51), defining the three-phenotype framework and the "manageable but not curable" position. Directly relevant to the corpus's treatment and natural-history threads, and the connective-tissue phenotype links to his osteoporosis/hypermobility survey (PRH-0402).
Context — the post Powers was replying toVerbatim third-party text, shown for context only — not Powers’ statement. Usernames removed.ShowHide
Powers' comment replies to the original post "Cure for PFS" by [username removed]:
I want you to be honest with me. I recently developed this, and it's a real mess. I can't imagine living with this. It's a little-known disease that's often overlooked. I've seen that Dr. Will Powers is one of the few people who knows the most about this and is one of the most dedicated. Do you think there will be a cure for this? If so, how many years do you think it will take? Above all, I want honesty, no false hopes.
(Parent context recovered from the r.genit.al mirror on 2026-10-07; Powers' comment text itself is from John's user-provided export.)
Some fields on this page come from the release’s Markdown edition, which carries text the JSON edition omits.
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