Prep medication, reversing pfs?

#310

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.

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#311

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.

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#312

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.

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#313

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.

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#314

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.

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#315

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.

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#316

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.

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#317

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.

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#318

“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.

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#319

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.

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#320

tbh, what’s the point in knowing how they are doing long term if they never come back?

at that point its safe to assume they are recovered enough to where it doesn’t bother them to come back here anymore.

on with their lives and living.

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split this topic #321

A post was merged into an existing topic: Methyl steroids as a treatment for sexual symptoms

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#322

Many of your comments are wrong.

1.) prep is not concidered a dangerous drug. Millions now take it as a preventative measure against hiv. There are a few people who have very serious complications to taking it but they are sensitive to the drugs. I live in NYC and half of the sexually active population is in PreP. It’s advertized in subways.

2.) I have been posting on these boards for years as well as the cfs board Phoenixrisimg. I posted in 2016 I was getting better before this thread was ever created.

3.) not one person here knows what the fuck PFS is. For all you know finasteride screws up your immune system and activates dormant viruses. Currently the theory behind CFS is reactivated viruses from mono, CMV and other viruses that are very common in our society. Cfs and PFS both have overlapping symptoms.

I experienced a crash after finasteride just like everyone else and yet I was treated by a cfs doctor dr Susan Levine for years. My hormone profile was screwed up after finasteride but she ran tests and shows I had “reactivated” momo. … like others got better within 6 months of taking prep.

It’s also quite possible that the people responding to prep never even had PFS and only had cfs … who the hell knows …

Take it or don’t take it but don’t cry about how it’s some crazy dangerous drug. The drugs have been around for 30 years. Anyone can go get a script for it today. A blood test 4 weeks later tells you wether your body metabolizes the drugs properly or you are a poor responder. More than one person has said they felt better after taking it but you are right. It could be placebo.

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#323

I might have not made myself clear: I was speaking in general terms, i.e. many have experienced with different drugs and a lot of people have managed to make their symptoms considerably worse because of it. I was saying that experimenting with different drugs to fix yourself is inherently dangerous if you do not have any idea what PFS is or how it changes your reactions to different medicaments.

Also I find the idea that a random poster on the internet wants PFS victims to try out anti HIV medicaments kind of cooky :D. Not saying it cant possibly work, just that its really a stretch to imagine it working. :grinning:

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#324

If you read my posts, I never recommended it. I have however been treated by 2 specialists in Manhattan and I’m pretty much back to normal. (I’ve seen 20 doctors and even had sleep studies) PreP was my idea because I have a healthy sex life but Dr Levine had me on 2 other antivirals. Thus was done after having extensive blood work done. I had 50 tests done looking at everything from sensitive hormone essays to looking at Lyme disease, celiac, mono, cmv, pneumonia. I had blood transfusions done and bags of vitamins dropped into my veins. This was all after I started getting better on PreP. Prep drove me to get answers from dr Susan levin. I also was treated by an dr cliff jackness who trears PFS but agreed with my treatment based on my bloodwork. Most people don’t even do blood work here or do the wrong blood work.

As for people making themselves worse here I believe it. I’m an engineer so I approached it scientifically and won. I come here to help. You can poo poo it all you want and I’d be skeptical too. But you can also sit back and wait 10 years for a solution that will never come while your life passes you by … It’s Friday and I’m going out to party! :man_dancing:t3:

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#325

What ended up fixing you? Prep, vitamins, some other drugs? Apologies if you’ve already posted this, I haven’t had time to go back and read through the rest of your posts in this thread.

edit: I read through more of your posts. What did you end up doing TRT wise that helped so much?

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#326

Dr Jackness is a fantastic doctor. He gave me a supplement called adreset which has cordyceps and is an adaptogen that influences the HPA axis. helped boost my libido a bit. He told me someone else he gave this too"was bouncing off the wall" with libido. I might try adreset again because I only used it for about two weeks

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#327

My progress was slow. I have a drawer full of $2000 in supplements that I’ve tried like everyone else, I have everything from green tea and grape seed to HUman growth hormone and injectable peptides in my fridge and freezer. I don’t remember the exact date I crashed but it was within a week of stopping propecia. I also stopped adderrall around the same time and thought maybe I had adrenal fatigue but that was ruled out. Most of my problems became fatigue, vision, mental, sleep, erectile, depression and speech. I did not link anything to propecia for years until searching all of my symptoms. I never claimed I had PFS, cfs, or adrenal fatigue and just knew that something was wrong. I eventually went to my GP who prescribed me Wellbutrin and sent me to a psychiatrist after multiple visits. She then put me in adderall again. Maybe a year after this I broke down in my GPS office and he sent me to an endo. My estrogen was a little low and my T was about 325. Cortisole was high. Not low enough for trt. Endo sent me to a sleep study and put me on statins. Went back and forth for a while and then gave up for maybe a year. Started back at the gym and really pushed myself but had trouble gaining muscle or loosing weight but I went every day and fought the fatigue. I decided if my grandfather had this (he is a tough old bird) that he would fight through it. I got a little better … sex life improved but still lots of crazy problems. Vision issues. Bright light was like a sword in my eye. I could barely speak intelligently sometimes. Most days I would come home and fall immediately in bed! 2015 I think I got put on PreP. Within 3-4 months my life changed. Enough so that I posted on a cfs board that something drastic had changed. It wasn’t even a little change it was like I suddenly broke free of some chain. I was still having problems but it was a huge leap. I decided to figure out what was going on. Went to an allergist, visited a colon surgeon to check my gut, saw a urologist for Ed, Decided to change endo to jackness. Jackness was a 3 -4 month waiting list … Went to a cfs doctor called Levine. Over 3-4 months Levine ran an insane amount of tests. Tests you have never heard of. I can post a screen shot of some but my CMV was high and my mono showed as activated. (And something else I forget) 80% of the population is a carrier for these viruses. She looked at many viruses. Checked for Lyme disease. (She told me she had lots of men come in claiming of PFS or cfs and actually had Lyme disease … its bad in my state). Our bodies usually keepmost of these viruses in check after you have had it once. CMV by the way is super common but is what also kills many aids patients when their immune system fails. Most people have CMV. It’s morec than likely what causes weird eye issues I was having. … Levine says something has caused all this crap to reactivate … my immune system has become weak so she puts me on valtrex (herpes meds) and some other very dangerous anti viral for cmv … it is super dangerous. I use these for 4-5 months but side effects are aweful. I did however feel even better after stopping. Finally she decides that my hormonal profile is possibly screwing up my immune system. (I’m seeing jackness by this time) Ran some more tests and my T is still around 350. Free T was super low. Estrogen still low. She prescribed me testosteron to try. She actually prescribed it incorrectly and I have trouble getting it filled. At this point I say screw it and joined an online trt clinic but I also joined a walk in trt clinic in the city. I joined both because I wanted the walk-in clinic to teach me how to use my T and get it dialed in. Then switched to mail order where now I inject into my fat 3x a week. Jackness was wary about prescribing T but ok with gel.

Long story short I started at maybe close to bed ridden and about to lose my job at 15%-20% of normal. Changes in diet and gym (keto) pushed me to maybe 35-40%. PreP was a night and day leap in 3-4 months to maybe 65%-70% … trt was not over night but shot me to 110% in a year. (Trt is a long journey) Having a sex life when you have money at age 44 is 1000000% better than sex life in your 20s when you don’t know shit haha

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#328

If you have doctors in a Manhattan that you can recommend and have had success with, please let me know who they are, as I’d love to visit them. Ten years with this condition has really taken its toll.

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#329

Dr Clifton jackness and dr Susan Levine … levine is unorthodox and will run every test known to man. Jackness will focus on the hormones

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