In it for the long haul?


#61

I am not an admirer of his antics, I am an admirer of his willingness to push boundaries and explore even if it comes at his own peril. That admittedly takes a lot of courage. I know we covered this before but you want to rehash it again to deflect any embarrassment you might have incurred. Fine. He claims to have recovered almost back to 100%, notwithstanding the vicissitudes of his past statements, I do believe him when he says he is feeling much better. So given that I believe him then it would appear that through some wild experimentation he has managed to find something that is effective for HIM. The recurring theme here is that, as you so handily pointed out, there is no magic bullet. What works for one may not work for another. But to say that this is all luck and no intervention is just clearly inane and self-defeating. Clearly some forces are at work through intervention that seem to move the body inexorably towards a better state and even recovery for some lucky ones. Although, I do understand your anxiety and concern for others who were willing to hop on board with JQD’s line of thinking and action. It is quite risky but these are grown men we are talking about, not children, albeit in a more compromised state. Suffice to say that we just have differing points of view although I have the advantage of the hindsight of over ten years and I can tell you that only when I followed the specific regimen that I am following now have I made any real progress. My own experience and progress is also surely worthy of note and due consideration, given that I have had this problem for much longer it seems than you have.


#62

#63

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#64

I am wondering how are you doing nowadays?

Your very high DHT means there’s something wrong with the next product, have your checked for 3adiol and 3adiolG?
I also think you could have a thyroid issue, have you checked T3/RT3 ratio?


#65

oh…funny…i told you this before I was theorizing on the UGT enzymes, before I read the study on mitotane!!!

2 guys in the italian study had very high 3adiol i think…

I saw all your blood tests (i had seen them before).

I want to ask you:

  • are you loosing more hair than before?
  • what did you do (sun ??) or take, in the period which brought your vitamin D up?
  • I would like to ask if you could test your bilirubin and reply to me?

Thanks man, really what I suspected! I still have to confirm more data this week but I think everyone who has had low vitamin D will have low 3adiolG and high DHT…Im assuming that will come with high bilirubin as well cheers bro


#66

@xptriado

From over a year ago:
Bilirubin, Total 0.7 mg/dL (0.0 − 1.2)

Good you found the RT3 test results. I’m waiting for some more test results from Baylor college. They’re taking longer to process some of the rarer metabolites that people rarely test for. Very curious about those.


#67

How would you rate your quality of life, Merrychristmas, 0-10, 10 being pre-fin. I have very similar side effects as you, and a very similar story, although I am at the early stages. Your thread gives me a bit of hope but also a bit of the opposite, seeing you’re almost 5 years off the drug still with emotional blunting.

Best,
Brian


#68

Hi there,
That would really depend on where you put the zero. Right after getting sick, I was so low… Almost vegetative. Didn’t have the motivation to even leave my house to go to the grocery store… Slept 14 hours a day… Or in some periods, didn’t sleep at all. I was a mess for a good two months. From that, I’ve gotten to about 5 or 6. 7 on good days. Improvements have been very slow, but noticeable.


#69

Good to hear. Did you have debilitating brain fog? I saw that kind of cleared up for you. Would you say that’s entirely true now? How have your blood tests looked over the years?


#70

I had awful, debilitating brain fog. It was so bad I had to go running before meeting with people to get enough blood flow in my brain to form complete sentences. I felt like I had been lobotomized.

It is much better now, but it took me fucking five years to get here.

A record of my tests:
http://propeciahelp.com/forum/viewtopic.php?f=4&t=4933

The most noticeable trend is that SHBG has steadily increased, and free T has gone down.


#71

Good to hear it got better for you. I’m sorry it took so long, but at least you’ve seen improvements!


#72

I received some shitty news last week – I received a diagnosis for testicular cancer, and had to undergo an orchiectomy (having my testicle removed). There’s no reason to suspect it’s connected to PFS – the cancer seems to run in my family. But it does add an additional pile of bullshit to my life when I’m already doing what I can to manage PFS.

Before the surgery, I did a hormone test to get a baseline for the androgen production that’s going on. The results are really encouraging.

Testosterone 920 (348-1197 ng/dl)
Free testosterone 17.2 (8.7-25.1 pg/ml)
DHT 86 (30-85 ng/dl) – HIGH
SHBG 60.3 (16.5-55.9 nmol/L) - HIGH

For the first time, my free T is normal!


#73

I’m really sorry to hear about that, bro. Are you going on trt now? What symptoms did you have?

Really hope you come out of this well. I have a friend who never took fin or anything who had testicular cancer, got one removed and fathered a healthy little boy once his treatment ended. Just thought that sharing this could help. If you have any questions to him I’ll be pleased to help.

Be well


#74

@AntonioBR – That’s incredibly encouraging. Thanks a lot for sharing!

No, I’m not on TRT. Symptoms are anhedonia/depression/no libido/no motivation, limited penile sensitivity, throat tightness, dry skin, memory/cognitive issues, constipation/digestion, tinnitus (this is new), brain fog, among others.


#75

Hey merrychristmas.What has happened since you lost the testicle. Has it affected your hormones? Are your symptoms worse? Many guys struggle with on testicle and need TRT. I would say most do. Please let me know.

Thanks


#76

Hi MerryChristmas,
Just wanted to say thanks for updating this thread through the years, and I hope you are doing well since the testicular cancer!

Like you I have been surprised how diet seems related to sexual side effects though I haven’t made as much progress in figuring out what works for me. Your posts are going to be a template for me now that my digestion situation has gotten tougher so, thanks again and I hope you have had a speedy recovery from cancer (and someday PFS!)

Graywire


#77

Hey, thank you for that Graywire!

What I’ve seen with diet is that you can always take it one step further. You can always be more restrictive, more disciplined, get higher quality ingredients, etc. The trouble is that it’s very disruptive for your social life, which in turn can be bad for your overall mood, especially if depression is an issue. But we have to keep trying, I guess.


#78

I’ve been testing positive for blastocystis hominis (a parasite) a few times the last couple years, and this year I decided I’d try to get rid of it, after reading some anecdotes about spontaneous recoveries after clearing parasites.

So – I embarked on two courses of antiprotozoal/antibiotic medication (the first one wasn’t effective) – (alinia, septra, tinidazole, paromomycin), and two weeks ago the blastocystis test came back negative. So that’s good news. What’s less good is that it seems to have made no difference on PFS.

Also bad news is that paromomycin worsened my tinnitus (a fairly common side effect).


#79

PFS could be caused by hidden problems you had prior to taking fin, in his case it was parasites and two days of antibiotics cured him of PFS. We might also have parasites but our hidden problems which came back to bite us when we crashed on fin were obviously different


#80

Hi @vincentv - i haven’t seen or felt any change in testosterone levels. I wouldn’t be opposed to doing a short trial, but I don’t think it’s likely to do anything.