DOCTOR TREATMENT PLAN

Therapeutic Efforts Pharmaceutical
#1

I was thinking that maybe it would be a good idea to start notifying doctors like Irwig and Jacobs that quite a few PFS people have had success with XYREM/GHB. Maybe that way they will look into it and maybe start developing better treatments for us - and possibly make it easier for us to get it. I feel like what some doctors are doing now is stabbing in the dark. I spoke with Goldstein over the phone and I didn’t like the vibe I got from him. He seemed to think that my problems could be partly due to being kicked in the nuts once when I was young and riding the bike here and there. I HIGHLY doubt that.

Anyways, I think Irwig and Jacobs maybe our best bets (Irwig because he’s a leader and Jacobs because he’s knowledgeable in neuroendocrinology). But, I think we need to get some organization especially with the really active people here (40, awor, Mew) in terms of treatments. I think the XYREM/GHB could really help with the neurological components. Maybe we can also notify the researchers who have been doing some of the studies?

I’m just giving my input, please let me know what you think. But I really think GHB could at least partially help us (most people who used it saw at least a little improvement) and I would die to get even 70% sexually back.

What if doing a detox and treating the adrenals helped our bodies hormonally, and the GHB helped neurologically. Good diet and exercise to help along the way of course. I don’t think these are “cures” but ways to help our bodies recover naturally which has been shown is very possible.

#2

100% agree!

It would be great if they started looking into the themes cropping up on the forum with inflammation, the immune system, thyroid.

. GHB
. Naltrexone
. Thyroid treatment

As potential treatment options

#3

OMFG, he still believes that crap? And this is supposed to be one of the foremost practitioners in sexual health? I despair.

#4

I agree that ghb needs to be looked into more. It appears to help more than any ither drug/supplement. The issue would be finding a dr to prescribe it for off label use. It is possible that crisler would…

Other wise any of us w access to a legit source aka drug dealer should try.

#5

Well that was fast…

Crisler basically said he doesnt know enough about GHB and it is very unlikely a physician would prescribe it to PFS patients.

Find your local drug dealer guys haha

#6

In my opinion, Goldstein is a quack who is taking advantage of PFS sufferers. I think a lot of the docs “treating” PFS are. None of them take insurance and that is very suspicious to me.

I seriously think we need to push to Irwig or maybe Jacobs about GHB. Jacobs doesn’t take insurance either, but at least he knows a lot about neuroendocrinology.

#7

If you are interested in this route, there is XYREM, which can be prescribed. It is essentially “legal” HGB, from my understanding.

#8

Ithappens managed to get it and eventually recovered. I would hope that the PFS docs would be open to trying it, especially someone like Jacobs, although it is a very controlled medicine, especially in the UK. Apparently it costs the NHS an absolute fortune.

#9

They don’t accept insurance because it’s an expense for them. You have to hire people just to handle the paperwork. If you have enough demand that you don’t have to incur that expense, you just don’t. It’s that simple. I think they only conclusion you can draw from that is that they are in demand.

I don’t think Goldstein is a quack. I had one conversation with him in which he was so blunt about PFS that it put me into a pretty deep depression to the point where it was hard to even function. I do understand that he was being honest and his experiences with PFS patients. He has made some significant breakthoughs in other areas of sexual dysfunction and he brings alot of resources and experience to PFS. If you’re interesting in seeing him I don’t think its a bad idea.

GHB is interesting. Personally I think I may waite until the research gets along a bit further. I’ve also been looking into Stem cell treatment to get back some of the damaged tissue. I think Goldstein might be one to ask about that.

#10

I don’t doubt Goldstein has plenty of experience and is an expert in his field. I’m just dumbfounded that he continues to tell people getting kicked in the nuts as a child might have predisposed them to pfs. I think taking an anti-androgen which demolishes the most potent male hormone by over 70%, and is on record as giving sexual side effects to up to 38% of users, might be dangerous enough of itself. And how would childhood genital trauma make you more likely to get brain fog, depression and muscle loss?

However good these PFS docs are made out to be, they are basically using the same pharma products in treatment that normal hormone specialists use if so inclined, with their own twist. Goldstein seems to do uro style treatments for bloodflow to the penis, Jacobs rushes to TRT in many cases, Shippen was copying awor’s procaine idea…

I’m not saying it’s a bad idea to visit them, but I think the people we need to help us are scientists not doctors.

#11

Apparently GHB shouldn’t be that difficult to get in the US, so speaking to a dealer or anyone you know in the gay scene is probably a good shout. Then of course there is always the option of buying GBL off the internet, which will automatically be converted into GHB by your liver anyway.

Boston, wow. I guess you are prepared to wait a very, very long time? also, have you had tissue/ nerve damage verified by a professional? i can tell you for a fact that right now my penis feels as if it is damaged forever, but as i have mentioned before - it felt normal during brief recoveries, therefore i believe that if you address the root issue there will be no need for stem cell therapy on tissue (not that you will ever get it anyway). Many guys, that are completely impotent long term don’t even have tissue damage.

#12

^Agree 100%.

UK20- I know I’m extremely shrunk up both flaccid and erect. To be honest it causes me a huge amount of depression and anxiety. More than all my other sides combined. I hope when we ever can treat this “root” cause things will go back to normal. But, some papers I’ve read on stem cell treatment for ED and tissue regen look promising.

#13

I was on Xyrem for a while - sent me to sleep very quickly - helped energy levels a little and maybe a little with erections but these would be most likely due to the improved sleep and increased GH production. Overall didn’t make a fantastic difference.

#14

It’s really hard to get mew

I went to a sleep specialist and he was very uncomfortable prescribing any kind of drug for me. He wanted me to exercise first which is really hard for me because of PFS energy and motivation issues

#15

How did you get it?

#16

My father is a doctor. He gave it me under supervision. Just to pre-empt the question I don’t think he would feel comfortable prescribing it to anyone else. Took me a while to convince him for me.

#17

What did he say, if I may ask?

#18

I have worse than just shrinkage, my skin has completely changed and so has the architecture of my penis. Oh, not to mention that my scrotum is now covered in eczema. So, if my bits can return to normal, i guess/ hope that yours can too mate. The last thing you need to do is worry about further treatments along the line because you simply do not know until the root cause is addressed. Our minds are already stressed thinking about the symptoms we have been left with and recovery, let alone further treatments to repair damaged tissue that we don’t know whether we have.

Back on topic with Goldstein. He is well known amongst the SSRI victims and i think many of them have seen him.

#19

Many may have seen him out of desperation, but I’m very skeptical of the guy and will continue to be until someone here posts that they were recovered mentally and sexually from PFS sides by Goldstein (or at least 80% recovered).

#20

Also, what is so much more dangerous about Xyrem that is almost impossible to get. When finasteride is being pass out like candy?

OK, xyrem may kill you if you overdose, but that goes with many prescriptions.

Finasteride can destroy your hormonal balance, screw with your neurosteroids, and turn you into something not far from a vegetative state from what I understand.

I seriously think doctors need to start looking into Xyrem for PFS, I have hop in Jacobs, he seems the most credible.

Eitherway, I think Xyrem will only fix part of our sides, I think we need other things too? suggestions?