He’s had Mark Gordon on a few times talking about PFS and finasteride…I got treatment from him for awhile…He costs a fortune…
Thanks , I’ll check it out.
Did you consider it worth it or not really?
What @bunny88 said seems to be the case more than anything.
.
AFAIK, they weren’t supplied with the 23andMe data, if that’s what you meant, only survey results.
I personally wasn’t involved in communications with them. The idea is to get a researcher interested enough to make it worth designing a study protocol, then see what could be done in regards to funding.
Yeah, I think after Baylor, researchers directly affiliated with universities should be avoided if possible. And I am forced to wonder how far the sinister hand of pharma reaches after BWH.
1 Like
…or something else.
Possibly just no capacity to take on the work. Perhaps he was offered something that was too good to pass up.
There’s no need to immediately jump to the worst case scenario.
We of course don’t know why the researcher has decided not to go on. If we are to believe outspoken pharma critics like Gøtzsche however it’s unfortunately entirely frequent that big pharma enterprises massively bribe and threaten the government, research etc.
Something I couldn’t have believed years ago actually…
Anyway I do hope we find someone else to collaborate with and I’m sure the admins know what they’re doing.
On the other hand one also have to admit that EMA acknowledged pssd (sexual symptoms), renown doctors and professors are warning about pssd/pfs and research, even if rather sparsely, is taking place. So big pharma is influential but not omnipotent and there are professionals supporting and (potentially) advancing our cause. It’s a twisted system.
1 Like
Thanks for the inputs Doomed. I ll see about getting new blood tests done. All these chemicals you listed, do they come normal for everyone? E.g - Are DHEA levels consistently low for us sufferers, or can it be normal too? Similarly for the other chemicals.
My reasoning for asking this is, why are blood tests useless for us. Nobody looks at blood tests here.
I thank you so much Crossroads for not giving up on me. I got tears while reading this.
I promise you man, I promise you I have put this condition off time and again and lived like its not there. My condition doesn’t improve. This is why I have been quiet for the past months, I lived like I am ok and just came here to check on the people here.
I am desperate now because this has failed once again and I am at the end my rope.
1 Like
Guys, I am asking everyone, not just the mods. Please try and get someone onboard here who can talk to us actively. I have contacted the Indian doctors on PFS foundation. One said they didn’t know a solution and the other hasn’t responded. I have approached a MINIMUM of 15 doctors who either
- Scoffed at me
- Didn’t understand me
- In one case literally pushed me out of the office.
- Sympathized but didn’t express interest.
- Looked at my blood tests, told me I am fine
But there must be ONE person out there who’s interested in helping us. The survey data and the 23andme data will help so much. WE WONT BE SITTING HERE FEELING HELPLESS if this person is online and we are in touch with them to go through all possibilities.
We can pay this person collectively.
We need research into this, we have had enough of trial and error and it has obviously not worked out.
But here’s the issue with a research team, finding them is unknown ETA, supplying them info and convincing them to move in correct direction unknown ETA, waiting for their research behind closed doors UNKNOWN ETA, waiting for their results UNKNOWN ETA. This is what I said in the literal first post of this thread. Many of you have the patience to live like this until then. Me and A LOT of others can’t simply live on without hope.
We can get a totally normal doctor here, no need for a specialist. Have them look at the data, have them look at the member stories, interact with them online in real time. And get their opinions. As soon as they hit a dead end, we ask them to refer us to someone else. That sinking feeling of hopelessness will not be there anymore.
I promise you guys this condition is not as hard to figure out as cancer or HIV. So many people here have been able to figure out some small portions of the etiology from their homes atleast. @Sibelio, etc.
Lets not wait for the big guns. Lets start now with the first thing we get. I have been trying to get someone onboard on my own. It didn’t work out, THATS WHY IAM HERE BEGGING all of you. I m definitely not sitting here on my throne wagging fingers at the admins to bring me solutions. I am begging each one of you, to try now whatever we can do. Getting people to do survey is paramount, that is the data that is needed. This is where the diagnosis will start.
I have PMed the members of the reddit thread I linked earlier and I will try to get them here. I have been granted access to an isotretinoin side effects group last week and even found one person who has full blown PAS ( that group is about all side effects of iso, not just PAS). I will try to get them here.
I don’t want to die thinking there was something I could have tried and I didn’t. Please do it for me if not for no else. @Greek @Dubya_B mates, is there something wrong with this plan. I am not asking this gloatingly, I am asking geniunely if this plan might work out or not. What could be the kinks in this plan and what could we do differently. Obviously we need a full team for research in the ideal case, but we haven’t been able to get that. As for convincing people for surveys, I am already on that. But that anyways will lead to a solution for the next generation and we are now.
1 Like
Or if we are not able to get a doctor onboard, fuck that. Lets plan a live meeting, discuss a possibility, all of us diagnose that possibility and move on to the next one. Obviously this is pretty much what we do in threads but atleast we ll be fast tracking the stuff.
1 Like
Blood tests are very important IMO for PFS and any other disease for that matter. Most fellas here and elsewhere usually jump into treatments solely based on anecdotal experiences from others who claim to have success with XYZ supplement(s) only to report later that their symptoms either (1) did not improve or (2) actually got worse. I too belonged to this same subset. We (humans) tend to look for shortcuts. We essentially come from different backgrounds and thus our biochemistry isn’t necessarily the same. So it stands to reason that one needs to establish a baseline first for his current condition and try to look for any red flags that merit further investigation.
PFS isn’t one single disease in my opinion, it’s more like the sum of all diseases that share similar profile e.g. low libido, depression, brain fog, tiredness, anxiety, anhedonia, ED and whatnot. There’re far too many issues that may lead to these same exact symptoms! Low Testosterone cause them, so does low E2, low DHT, inflammation, gut issues, adrenal insufficiency, hypothyroidism, infections, extreme stress, vitamin and/mineral deficiencies… etc.
And then there’re those posters here who have used entirely other drugs and report similar symptoms as PFS. Accutane, SSRIs, Saw Palmetto, Minoxidil, Ketoconazole to name a few. Heck there are even a few posters who say they have PFS-like symptoms despite never taking anything.
So it stands to reason that one must try and find the individual root cause (s) that’s causing the problems and try to target them first.
2 Likes
I am on the same rope, but it does not have an end. All of us are hanging on and we have each other. Maybe it seems silly but it is really the truth. We are supporting each other, no matter if or when any kind of research study comes out or not–we are here and we will remain here for each other. Ups and downs are okay–everyone has them. We are not alone, we are connected. As my favorite politician says “my spirituality is: we are all in this together.”
2 Likes
I can appreciate the desperation and have been there for many years now. But asking a doctor, any doctor, to navigate through this uncharted territory will get us nowhere.
What can they do that hasn’t been done already? How can wasting more time and money taking pot-shots be justified?
How can it be said that anyone has figured out any part of the etiology of this condition on their own until their hypothesis is tested?
2 Likes
I don’t want this to sound harsh, but I don’t know why you’re asking other people to contact doctors. You could do that.
Every doctor has an email address, you have an email address. The majority of the world speaks English, you speak English. You are able to explain what you want to do, as you have done so here.
You could do this without any assistance from anyone else, instead of asking people here to do it, why don’t you make the enquiries yourself? You don’t need a team to send an email.
3 Likes
And if you are feeling bad or helpless, remind yourself that it is just a feeling.
And join forces with us or one of us to do what you can do.
2 Likes
Idk why it seems like I have not been making efforts. I have tried time and time again in this same thread to convey that I have been trying to get in toich with people.
I have met the head of endocrinology of AIIMS in India, the absolute best hospital in the country. I have tried to get in touch with the director of endocrinology in NIMHANS, the top institute for neuroscience and mental health. I have contacted people on Fb groups. I have pursued online consultations. I have talked to doctors my orthopedist uncle found out. Nothing has worked out. I have met so many doctors, 20 minimum off the top of my broken head . If I had been able to make progress I would have posted that instead.
All I want is for US to come together, contact a research team and proactively diagnose, eliminate and zero down onto all possibilities slowly so.we can lay off the same speculations that people have had no choice to but to repeat over the last 2 decades.
If we are able to get a team together. Everybody here can participate instead of feeling despair and feeling useless.
In every thread, Im sure you ll have seen, people post ’ we need to do a proper study on this’. Its always been ’ we need to do’ or ’ there needs to be’.
Lets do the needful. Lets get it done now, instead of waiting. Im not talking to a single person here. Im talking to everyone who is reading this. Lets come forward now guys please.
We dont have passive visibility like cancer or aids.
Nobody gives a fuck about us. We need to make active efforts to get people to pay attention to us.
Please try and find someone who will listen or someone who can tell us someone who will listen. If every person here gets up and tries to get a research team or a doctor or anybody who can help us, I am sure we will be able to find one.
Please don’t think someone else who’s reading this message will do it. Its been decades and no one hasnt.
5 Likes
This, I agree with.
1 Like
Only that and nothing else?
1 Like
Guys, I am once again requesting all of you. Lets make a concerted effort or else we will just end up staying undead zombies for the rest of our lives.
Please respond, let’s do something about this.
Any idea is welcome. Lets just make efforts.
1 Like
I agree that waiting for a scientifically proven cure is daunting and may take too long to be comfortable or worth the wait, at least for us who are dealing with this now.
Regardless of your opinion on the matter could just please fill in the survey. Even if you don’t believe in it or want to wait for a scientifically proven therapy. At least it may be possible to prove yourself wrong and if so wouldn’t that be a good thing? We need every survey result we can get. Surely it’s worth more than 45 minutes of your free time?
I mean filling in the survey doesn’t go against self-help and speculating and trying things ourselves… Just contribute whenever you can. Please.
3 Likes