Just to confirm, is anyone actively trying Prep with truly beneficial results? It seems we had one person report some hazy success, and then a few others who didn’t really see much and quit.
Me … i didn’t start this thread but I posted about suddenly feeling better in another cfs thread years ago after taking truvada for 6 months. I just found this thread and was like omg. I’m not promoting truvada but I take it. I take it because I live in nyc and I travel to crazy countries with lots of hiv. (I have many lovers in Colombia You will have to scroll up to find the links. I posted maybe 3-4 years ago in the other site. When I crashed I saw 8 doctors of different studies. Our symptoms are closely related to CFS so I sought help from a cfs doctor in nyc. I had many of the symptoms of PFS but many of those are also cfs. There are like 5 classifications of cfs … some have severe joint issues or IBS. I didn’t. To be honest I can’t even prove it was truvada but I just kept getting better. It was the only major change in my life but for all I know I bought a new coffee that made me feel better. Eventually I also decided to get on TRT as well 14 months ago. I was at 80% around that time and it pushed me to maybe 95% feeling good! I was probably at 35% at my worse.
I think my point is that if I were still feeling bad I’d try anything but that’s me. My life sucked before I got better. I couldn’t live that way. I would have licked lead paint if someone has said it would cure me haha just kidding. But in all honesty taking an antiviral for a 6 month trial is not going to kill you (unless your allergic to it). I get that some people took a pill and it made them this way and are reluctant to take another.
@Rmoney96 is on it, and I believe he claims brain fog went away on Truvada. In addition to Truvada, I’ve read of some people getting relief from CFS symptoms by using some anti-virals. I might go down that route later on, their side effect profile is pretty minimal.
Ye , I found different brands of it , so basically its generics with the same ingredients. Pretty easy to get in uk without prescription and its not that expensive.
What makes me sad and mad, is that this topic starter basically said ‘’ HEY, finally I am cured. Bye guys’’ and vanished forever, without letting us know how is he doing in a long term. Maybe he actually had HIV prior to PFS and thats why he got better ?
One would assume he’d post again if things went downhill.
You can’t take just prep if you are hiv positive. Truvada is part of a cocktail they Higgs you if you are hiv positive. Just truvada will make you worse which is why they test you regularly.
Its a typical recovery protocol/story: Some guy feels better, presents a highly questionable theory/protocol and nobody can reproduce the same effect. Poster vanishes soon afterwards.
The only thing that astonishes me is how much weight people put into these posts.
Others were able to reproduce the effect.
Of course, via the placebo effect.
Ignoring the fact that resources could be spent more effectively elsewhere, I have nothing against people trying NEW ideas. And a crazy idea like swallowing anti hiv medication is certainly NEW. I benefit from it, if by pure chance it works. However dont try to convince me that this thread demonstrates prep being a solution to PFS.
As far as I can see its currently dead in the water and nothing beyond what can be accounted for by the placebo effect. Lets see what happens.
New isn’t always bad. Maybe it’s a placebo effect, maybe it isn’t. Neither poster claimed to be cured, but rather that they noticed an improvement in symptoms.
A slight improvement in symptoms can entirely be explained by placebo though. No, new is good. Lots of the stuff guys are trying has been tried by a lot of people before without success. So at least PREP is something new. Of course its very dangerous stuff, just look at some of the suicides, many committed suicide after trying dangerous medications to fix PFS worsening it considerably in the process.
Anything could be attributed to the placebo effect. If you look at drug trials, often the placebo effect in the control group provide similar if not greater benefits than those taking the actual drug.
Yes but a drug that gets FDA approval has to prove effectiveness, i.e. the benefit has to be greater than the placebo effect of the control group.
Yes. But we’re not talking about FDA approval here. If a trial shows that the control group experienced a 10% improvement in symptoms whilst the group taking the drug experienced a 20% improvement, it’s still an objectively small improvement but an improvement regardless.
There is no reason to believe that PREP will do anything for PFS except what can be explained purely by the placebo effect. An improvement beyond the placebo effect would be a surprise. If you take something totally random like PREP purely because somebody experienced something positive, you cant expect much.
I dont see evidence in this thread that anything substantial happened when people other than OP took prep. So currently it seems like high risk no reward situation re PREP. Lets see what happens. This is just my understanding of the situation. Anyone is of course totally free to take the risk and report back what happened.
Before you were describing a situation were the drug does not provide greater benefit than what can be attributed to the placebo effect. In this case the FDA would not approve the drug, since efficacy would not have been proven. The FDA not only demands that a drug is safe but also effective.
“Safe and effective” is just a marketing term.
I wouldn’t use the FDA as measure to how good or bad a drug is.
Remember the FDA are as corrupt as f**k and are reason we are all here.
Propecia is just one of many dangerous products they have allowed onto the market.
Its not really about the FDA. I am just saying that it is hard to discern whether supposed improvements on a protocol are not pure placebo. In my estimation most improvements that are reported back after starting a new protocol are pure placebo.