A catalyst to create awareness for PFS with Zulresso

General Discussion
#1

So I for one have got up today after my 1 hours sleep , full relapse of this shit in its 3rd week now. The tinnitus now sounds like one of those ear piercing screams let off by a 7 year old child in the playground, in my ears constantly…all day and all night.
I keep saying prayers to make all this stop …but for now Im suffering and its hard as always convincing my family and what friends I have left, of what Im going through.

I for one am sick of this shit.
I have completely had enough.

As @Greek agreed with me on one of my posts a few weeks back - its hard to make the medical and wider industries take awareness of this thing, when its not a recognised disease yet.
It needs to have a diagnostic test and to be accepted into medical literature before there’s any talk of a cure being addressed or even researched.
Till then we are always gonna be fobbed off with this idea that we are all nuts and “PFS is just in your mind, there’s nothing wrong with you” we hear all the time.

From all this crap like HIMS being advertised and introducing Finasteride on Facebook and YouTube to a HUGE new market of young men , alongside the fact that Finasteride can now be obtained from a simple pharmacy prescription as opposed to doctors, we are soon gonna receive a massive influx of new sufferers of this ‘mystery disease’.

In my opinion, the USA - where this drug was first patented and released will be the worst place to try and get these 2 things into motion. The fact that money funds Big Pharma who in turn lobby Congress in this circle of deception, has been going on for years and the fact that Propecia is a well known, highly publicised drug making them LOTS of money, it will be hard to break into and disrupt this circle.

I think we have better chances in Europe from the Medical Academia in Italy and France for example to get this fully recognised and into Medical literature.

However, to get this idea I have for awareness into motion, we WILL require a PFS sufferer from the United States.

We have some kind of agreement here that Finasteride has fucked with the Neurosteroids, particularly Allopregnanolone regulation and this is ‘possibly’ behind a lot of our symptoms. I think my symptoms are especially GABA related - Insomnia, Tinnitus, Anxiety, emptiness/Anhedonia etc

What we should do is this: Choose a United States based sufferer who is willing to have the Zulresso (Allopregnanolone Injection) and we create a PR Campaign to advertise it to the medical industry and to fund it by raising awareness and doing charity events, vlogs, football matches, TV appearances, Sponsored runs, Sponsored walks, Marathons whatever bollocks it needs to show the public and to get their awareness included in all of this.
We get the sanction and approval of several doctors to sponsor this - Irwig, Melcangi, Jacobs , SAGE Pharmaceuticals, SAGE Pharmaceuticals PR team whoever etc
We approach all people already who’ve been involved with Post Finasteride on a PR level like Kelly Pfaff, VICE, John Santmann , Paul Innes etc
The idea is to show the world with visual evidence that the new drug Zulresso is a potential remedy for a disease that needs to be accepted and this disease/syndrome is actually causing suffering to many, many men (and women) in front of most Doctors very eyes.

Alongside this we create a TV like documentary of us all coming together , starting the campaign, filming it from its initial inception on here, filming each waking moment leading up to the injection, the highs, the lows, the peaks and troughs that will sell it to a tv audience, the PFS sufferer having the injection will obviously be a big part of this and be willing to do Vlogs, monologues and have the injection actually filmed etc and the aftermath and conclusion etc

If we have a TV documentary of this the newspapers and media will naturally come to us - instead of us constantly chasing them.
Last time I checked Zulresso was $35,000 out of pocket for the injection.This is steep, some of it could be funded by donations on here between us but I think the majority could be raised from doing the charity events and drives I mentioned, and having it all filmed for TV will naturally create a wider circle of funding.

I know this post will probably receive a lot of critique, or members shooting it all down but I don’t care.
If you look on the forum we have argued on here for years about things staying the same, and nothing ever getting done…well here’s an idea to throw in the mix from me.
This could be potentially bring us all together under one project where we can all share out tasks and make a difference. It could actually be fun to do all this together and see the results, no matter what the results or the conclusions are.
If Allopregnanolone doesn’t cure the sufferer, then we are no worse off - how can you lose something you never had in the first place?
but if it succeeds then it will be a groundbreaking moment for all of us on here, some hope for this disease and our moment will be witnessed by a wide audience too.

What say you?! @LazarusRy @silentpain89 @NewYorker @Greek @whathaveidone4669 @axolotl @Dubya_B @Ozeph

Inspired by the words of Rambo from First Blood part 2…

“Finasteride, Im coming for YOU”

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#2

@Forwardsnotbackwards sorry to hear your having a bad time, in my humble opinion for those where the receptors are still working it’s a no brainer, it would work and would probably allay the full symptom list. It would be a dead duck for me because of the receptors but who knows id still give it a shot. Overall I’m bought into everything you say, hitting new lows with this on a frequent basis as some of us do is just soul destroying and we need to do something totry to get out of this Even those close to us don’t understand how bad this is or even believe half of it which is why we withdraw I’ve seen stories where lads have been abandoned by their own blood… Its a disease born out of hell. We need to get off our arses to change this the severely effected don’t have the luxury of waiting around and dabbling with shit for the sake of a boner, which I don’t mean to dismiss as I was distraught when my best mate decided to go into hiding but this is a different league. Hopefully others will be onside with your suggestions

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#3

I had the same idea a year ago, but it didnt come through becuz i was accused of trying to collect money etc from sufferers…Thats why i went ahead and pulled the trigger on my SAGE-217 experiment which was a complete and utter disaster…Im not sure, cuz it could have been time that made me worse, but it was at that point of trying SAGE-217 that i got severe tinnitus and brain fog to this day…See, i believe in testing stuff as im sure no one would be in the least interested in our disease becuz in a capital world, such a rare disease like ours, simply dont bring enough money, and one can never really tell if Zulresso would benefit us, unless someone try it, BUT after trying SAGE-217 which supposedly has the same mechanisms as Zulresso (Theoretically at least), im no longer convinced that raising neurosteroids or targeting their receptors can bring us any relief…Im sorry, but its my honest opinion.

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#4

@silentpain89 your receptors may be effected I think that’s the difference. I took paroxetene years ago and it helped greatly “works on Allo” looking back I was mildly effected and only had E.D insomnia and anxiety. I retrieed it years later and it was like pouring petrol on as fire.

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#5

I really feel for you. I’m so sorry you’re having it so bad.

I like your optimism and your post is an example of what I said before: smart people have more glutamate receptors, glutamate is a GABA antagonist and smart people have more chances of getting hit the most by the lack of GABA.

From what I understand, it’s epigenetic changes that made us sick and, among other things, cause polyglutamic toxicity. Glutamate is part of the glutamine complex. IMO, lack of allopregnanolone is one of the multiple symptoms that affects us but not the primary cause (same with 5a THDOC, similar to ALLO). I think Zulresso may (or may not) give good results, but would be dose dependent. The epigenome is not so easily repaired.
I’ve had friends who tried 5α-dihydroprogesterone, a precursor to ALLO. Some with mild results, some with no effects. I heard people trying GHB (the recreational drug) or Xyrem. They are both GHB which is a precursor to GABA and a GABA b receptor agonist, but also precursor to glutamate and glycine. This is all dangerous. It may give good dose dependent results, but it may also create a long term worsening of the symptoms. Again, the epigenome is not so easily repaired.

In my opinion, the answer to an epigenetic disease is epigenetic repair.
Dr. David Sinclair, a Harvard scientist, is doing research on accumulated epigenetic damage as a cause of aging. His protocol for reversing aging repairs the epigenome and I believe it’s a way forward.

That being said, we’re in the middle of a pandemic and a financial crisis (for those who noticed). I think you’re right, big pharma is hiding what they know about finasteride just for them to make money. On the other hand, the military-industrial complex is making bombs to kill people in other parts of the world just for them to make money. The US seems to be in a pre civil war state and I sure hope it won’t get there but you see, amid all this chaos, it will be hard to get the attention of the majority of people NOT affected by this disease.

People are all focused on the pandemic, the lockdowns, the loss of jobs and inability to pay rent and quite frankly, they’re being quite traumatized and de-oriented by all of this already.

Doctors are not helping, I was trying to explain to a digestive track doctor that my guts biome was unbalanced because of PFS and she referred me to the psychiatrist, quite frankly believing I was a nut case.
I sure feel we’re on our own here: we only have each others. But others have gotten better in the past and we can learn from them.

What I did is I went to see a doctor, told him I can’t sleep and nothing more. I got prescribed clonazepam. It’s not great, but I sleep and that’s a good start. And just like an old record, I’ll repeat myself saying being in a state of ketosis lowers glutamate, promotes GABA and helps produce sirtuin proteins that can repair the epigenome, according to Dr. Sinclair.

If you can get a message through with all the noise going on right now, I’ll be impressed. But you can do things for yourself that will make your situation better.

I sincerely wish you the best and send you my most positive thoughts for you to get better soon.

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#6

I hear you mate and I’m glad to have your opinion on this . I know you are keen to pick up and chase the PR route for this thing , which from what I believe is how CFS/ME got off the ground and when it was first recognized.

I guess I have contradicted myself as I say at first we don’t have a diagnostic test or a condition in medical literature , yet I’m already suggesting a potential cure (Zulresso) for something I’ve just said we don’t really know the true cause of .

But it’s less to do with the Zulresso and more to do with the PR ideas and campaigns we could potentially do between us and all of us taking part could be what brings us together a little bit yknow ?

I do agree with you in receptor damage . Hopefully I’ve got some left or the chance for repair :crossed_fingers: hows it going with your Mail on Sunday reporter ??

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#7

No I get ya …but it’s like I was saying to @LazarusRy it doesn’t have to be the Zulresso route but more to do with us coming together and making a campaign of some kind , that’s starts off outside the USA . Where we can come together and all be involved somehow , Zulresso was just a thought but it could be something else .

Perhaps it could be a tv documentary of a crew following some of us as we campaign to get it into medical literature or filming us as we get some kind of a diagnostic test for PFS .

I vaguely remember you talking about SAGE 217 - how where you able to get hold of this substance in order to try it ?

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#8

You’ve been so helpful to speak to lately @ozeph , it has been like a bright spot on the horizon for me .

I have been researching glutamate receptors more and more since you first told me about it .

It all seems to make sense . The tinnitus increased tenfold suddenly and it was after that the Insomnia started . I looked into the Glutamate / GABA balance and Glutamate imbalance could cause a particular tinnitus as it’s enhancing sensitory nerves in the brain etc. it was interesting to read.

Thanks for the tip on epigenetics , this looks interesting and something to follow up on for me .

I’m gonna be switching to Melatonin and Magnesium this week - and giving that a go . Possibly some CBD oil too as that seemed to help
Drop off last time off I used it

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#9

@Forwardsnotbackwards hopefully mate. Once the receptors are gone it feels very bleak. Enter faith. I’ve went back to him informing him of the damage this does IE much more than ED and asked what the angle of his article will be. I believe PR is key in getting us off the ground. There are 4 volunteers Inc myself. Unsure when it’s planned to be drafted/ published etc. I’m in ongoing dialogue. I hope things have abated for you slightly. I used to have a slice of turkey or a hanfull of lettuce leaves years ago to help with the sleep. Give it a try. Its obviously the trytropin which is in much smaller amounts in food and on a slower release. 30 mins before bed.

#10

I get what you are saying. You can take a look at my experiment with SAGE-217 in my Top Topics.

#11

Will do :+1:

#12

Not trying to pick a fight, but there’s no way of knowing this.

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#13

@orthogs I appreciate that but as I’m getting worse for no reason there seems to be little to no other explanation. As I continued taking it on and off for years unaware despite having symptoms early on I think it set of a chain of events/epigenetic. Imagine going back on fin yourself and continuing for years and how damaging that would be. Food that is good for certain hormones causes me increasing problems. Which has to be a factor. Receptors can’t take them even in small amounts. I think I’m suffering so many symptoms because of deprivation across the hormonal spectrum. I came across it in one of the scientific papers which also stated the greater the exposure the worse the case for some. An example I ate 1 Brussel sprout a week ago and my thyroid has felt like a tennis ball since, I can’t even touch it and swallowing is difficult. I’ve been on a fast two days now to try to abate it. My cold limbs and bleeding gums have improved, bearing out the theory. Half of one magnesium supp brought on a worsening of everything and I had seizure like symptoms, gabbe receptors. No one knows for definite I understand that as it’s so complex effecting so many domains. Hyoerthalmus, gut, endocrine system.

#14

Hi Ozeph, I was just curious if you had any sense at all of what the timescale might roughly be on epigenetic recovery via Sinclair’s methodology. Let’s say, for example, that PFS effectively aged some regions in our brain by “50 years” or something. Just as a crude hypothetical. Or that it screwed up our epigenome by “30%” somewhere. Do you have any sense at all of how many years of using your current methods (diet mostly) it might be reasonable to think it might be possible to undo all of that (or at least the major bulk of it)?

#15

According to the Success story thread, 4-6 years after crashing. Those are people that have been using technique similar to Dr. Sinclair’s. I’m 2 1/2 year in, and already symptoms I had for 5+ years like burning eyes are disappearing.

#16

Ok, I thought you were the only one here who has really done fasting strictly enough to actually trigger significant epigenetic repair. I was more wondering if you had a sense of what the theoretical rate of resetting is possible (e.g., 2%, or 2 years of aging per year of fasting, or something like that). I am sure that one year of strict fasting won’t reverse 50 years of premature ageing, but maybe it could do 10% of that and in 5 or 10 years it might be conceivable to achieve a complete reversal. Or maybe the rate is much slower?

Mainly just curious what sense of the rate of possible repair you might have, based on what you have read about the Sinclair-type methodology (i.e., theoretical rather than derived from reports here).

#17

wait whats in brussel sprouts that makes it harmful to us?

ive been eating boatloads of this stuff

and how did magnesium make you worse? there’s magnesium in almost all vegetables in abundance

#18

Brussels are good for the thyroid. Lots of stuff I ate only a few years ago with PFS didn’t hurt me then. I can’t eat fruit, vegetables any more. I previously ate more of them than anyone I knew. I guess my receptors are seriously fucked. There are one of two others who react to everything it’s insane. Outside of the PFS group people think I’m off m to head. Unfortunately it’s been a declining path. .

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#19

what happens if you eat them?

#20

I’ve always ate an extremely healthy diet. The healthier I ate the worse I was getting. I was having crash like symptoms every few days then I started to investigate the triggers and cut out foods one by one until there was next to nothing left. Symptoms would include waves of suicidal thoughts, extreme anxiety, bowel problems, freezing cold, nausea, weekness, even worse Insomnia, louder Tinnitus, muscle pains, urination, kidney pains, headaches etc. I still get all of the symptoms throughout the day but not as extreme. When I ate the sprout within hours I could not even touch my adams apple it felt as though my neck had been stamped on. A few weeks prior i tried a few bean shoots within 30 mins j was doubled over and stuck in the toilet in severe pain.

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