My Long PFS Journey

So how we do balance that ratio?

This theory makes sense but it doesnt explain why i got only low semen volume when the first years of my PAS? I mean my libido was fine, erections were fine… if something happened to my AR, why i didn’t have any other symptoms… also its not only me, i have talked with few people like me, who had particular sexual symptoms instead of full ED and Crash… weird eh?
nobody can know this i guess. Anywasy thanks for the info man!

Hehe oops. You sound exactly like my boss at work ;p

How can I access the survey?

Hit the button at the top of the screen, the one that looks like a bar chart. It’ll take about an hour but it will save your progress if you need a break.

Thankyou :slight_smile:

Mission accomplished :sunglasses:

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Sorry but what are you referring to with PAS?

We’re all affected but differently. Individual biochemistry and genetics may justify why we experience a plethora of symptoms. A prime example would be Dominican Men who narurally lack 5AR enzyme. So I’d surmise finesteride would affect them differently.

Don’t quote me on this but I think semen volume is partially governed by FSH which stimulates the sertoli cells to produce sperm. That’s why some men on trt have extremely low sperm count. You also have the prostate which is also affected by 5AR inhibitors. I read on other forums that men with low semen had success with SERMs and/or HCG/HMG treatments under the supervision of a doctor. Deficiencies in macros/vitamins/minerals may also result in less semen.

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Thanks, your new mission is to nag someone else into doing theirs now! :stuck_out_tongue_winking_eye:

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Well, I experienced something weird.

Yesterday, I didn’t take my morning dose of caffeine, skipped the L-Dopa, vitamin A and D, and despite having had a good night of sleep, I had heavy brain fog and confusion all day. I couldn’t work at all.
I believe it’s because I’m addicted to caffeine, or my body integrated it somehow in this new balance I’m in. I don’t know.

Came bedtime, I prepared my evening pills and my morning pills, and being still confused and brain fogged I gulped down some pills only to find out I just took the morning ones: 5-HTP, L-Dopa, L-Tyrosine, Calcium, DHEA, Pregnenolone, B3, B6, Biotin, Pine Pollen, Tribulus Terrestris; right before bedtime !

I wasn’t sure what to do, if I should force myself to vomit, but I decided to take the evening pills on top: Melatonin, Clonazepam, Hydroxyzine, lavender oil, Valerian, Passion Flower, Lemon Balm, Jujube extract.
(I’m cycling sleeping herbs, never take the same ones two nights in a row. Needless to say I’ve got a whole bunch of other herbs in reserve)

I was sure I was heading for a hell of a night, but as I did my evening meditation, I was particularly focused and clear minded. I went to bed at 9:30, slept normally; not waking up before 4am which is usual for me and I got up at 8am, fully rested. Looks like I moved a lot during the night, the blankets were all messed up. I didn’t take the morning pills (as I had none prepared) but was happy and joyful all morning.
Later in the early afternoon, I was hit with heavy depression, just out of the blue and for no reason. It was like being bi-polar: going from joyful to depressive in just an hour.

I took 5-HTP, L-Dopa, L-Tyrosine again as I always take it morning and afternoon and it’s now 7:30pm and I’m feeling normal again. A little joyful I might say.

If I learned something about this, it’s that taking all the supplements I’m taking, being on a strict almost zero carbs diet and having a tight sleep schedule is like being on life support. The moment I change the recipe and try new products, things go wrong. If I stay disciplined and change nothing, I have almost no symptoms: I only wake up a few times after 4-6 hours of sleep, toss around a bit and fall asleep again. I wake up rested and have productive days.

I think I will stick to my routine for now. I’m tired of trying new things and getting all messed up. Plus you never know when you’ll take the one thing you should never have taken, and then you’re worst than ever and it’s permanent. I’ve read more than one story like that.

14 months ago I could barely walk and stand up, had anxiety to die for, was sexually and mentally disabled and now, even if I don’t take the supplements and cheat on my diet with pizza and shit, the only thing I get is more insomnia (which brings brain fog). The other symptoms are gone. I’m still sick but I think it’s undeniable that my body partly cured itself. I think time is on our side and we shouldn’t mess around too much as it can cause more damage than good.

I’m on it :joy:

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Man, you remind me of my self a year ago. Just like you, I was on a bunch of vits/supps/hormones including (but not limited to) multi vitamin, vits D, A, C & K, DHEA, Fish oil, Tyrosine, CoQ10, Iodine, Selenium, Digestive enzymes, Coconut oil, Tryptophan, Arginine, Glutamine, Zinc, Magnesium, Calcium, Green tea extract, Ashwagandha, LJ100, Tribulus, DAA, Forskolin, B vits, Probiotics…

It was way too much! Like you, I had sleep issues and there were numerous variables that I could never predict. No matter what I did, I always had random stuff happening and I couldn’t pinpoint the root cause. Sometimes I felt like I’m 1000% recovered only to later feel like crap with major unrelenting depression hitting me hard.

I knew this wasn’t sustainable at all. I wanted a more steady state where I can be both relaxed and productive so I had to slowly taper off most of the stuff I was ingesting. It was too scary at first and yes I went through one hell of a roller coaster ride. It took many months for things to settle down. I’m on a very few stuff now and feel brilliant and more stable than ever.

Tyrosine, L-Dopa & 5-HTP are very, very addictive but are also very unstable with respect to their affects. I think you should try elimination process and gauge your feeling.

You crashed how long ago ?

For me it was some 16 months ago. I will tapper down but everything in its time. Most supplements have helped me. I went on experimenting for 10 months before finding the balance I have now and I’m taking small dosage of most of that stuff. I take 1/5 of a pill of DHEA a day for example.

And I respect your opinion, but I’ve stopped L-Dopa, L-Tyrosine and 5-HTP cold turkey for days without any effects. I often skip the afternoon dose and nothing happens. It looks to me what I’m most addicted to is caffeine ! I didn’t expect to have such strong reaction from not having it. Even when I was water fasting for 5 days I had a black coffee in the morning. But I didn’t L-Dopa, L-Tyrosine or 5-HTP and actually, i didn’t take any supplements while fasting. I was fine !

I tried stopping everything for a while and I found I feel better and I’m most functional when I take the supplements.

I used Propecia/Proscar/Ketoconazole/Rogaine/Saw Palmetto on and off for years. I recall popping that first Propecia pill back in 2003. I was young and dumb. I took Propecia again in 2005, and used Proscar through 2008-2010. I always had symptoms while on finesteride including lower libido, penis insensitivity, watery semen and brain fog.

I didn’t know finesteride was the root cause until one day I decided to quit cold Turkey. This is when symptoms hit me hard and experimented with almost everything under the sun for a cure. You name it, Andractim, AIs, Proviron, Testosterone, HGH, HCG, SERMs, Cortisone, umpteen T-Boosters, herbs, and minerals.

Unlike many others, weekly Testosterone injections in combination with AI made me feel like a Greek God! But the idea of being on weekly shots for the rest of my life wasn’t appealing so I stopped. HGH also felt great for a while but it’s super expensive. A month supply costs a fortune! So I quit it too.

Later I started experimenting with both essential and non-essential amino acids, vitamins, workout routine, diet and supplements. I crashed long and hard during winter 2017 and summer 2018. Starting Q4 2018, I changed my strategy and started getting regular tests for different parameters and embarked on a long elimination process. By Q2 2019, I eliminated most of the everyday stuff. I’m now taking a single multivitamin, very low dose zinc, magnesium & calcium. I miss how Tyrosine & L-Dopa felt when they worked but being in this semi-steady state is million times better. I can’t agree more on caffeine, I could feel a rush of energy after a few sips.

I take Tongkat Ali and tribulus as needed.

So you were sick for 9 years, you fought the disease with all you could, had your toughest time just a year ago and now, for the last 6 months, you’re at your best without taking much anything. Is that correct ?

If so, congratulation ! If you can stabilize this way, I believe time should make you better.

That’s correct. Like I said, there were times where I was (or at least I thought) fully functional. Funnily enough, my true journey to beat this epidemic begun in 2017 because this is when I completelly quit messing around with alternative hairloss treatments such as Ketoconazole, Azelaic acid, Saw Palmetto…etc. and also quit Proviron, Cortisone & Aromatase inhibitors altogether and this is when I crashed badly.

So technically speaking, 2017 & 2018 were the worst and the past 6 months were my best in terms of recovery.

Thanks bro, you are truly very supportive and I, for one, have learned a lot through reading your journal.

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Tell me, you said you messed around with all kinda stuff, including Ketoconazole. Isn’t that the stuff they put in anti-dandruff shampoo ?

It’s at 2% in the shampoo and I don’t think it prevent hairloss. Was the hairloss treatment more concentrated ?

I have a bottle of that shampoo at home. I’m wondering if 2% ketoconazole could make me crash if used occasionally.

I used Nizoral shampoo (which contains 2% Ketoconazole) in the past as an adjunct treatment to Propecia/Proscar for its anti-DHT properties.

This is an excerpt from NCBI:
“Ketoconazole has been clinically shown to be effective in the treatment of AGA. In this paper, evidence is presented to support the hypothesis that ketoconazole 2% shampoo has a local disruption of the DHT pathway. It is proposed that using ketoconazole 2% shampoo as an adjunct to finasteride treatment could lead to a more complete inhibition of DHT and thus better treat AGA”

Surely it’s not as potent as oral finesteride and applied topically may reduce its systemic absorption and subsequent effect(s). I’m under the impression, however, that many of us with PFS are very sensitive to 5AR blockers.

You may try quit using it for a while and see if you feel any different.

Update 11/10:

I’ve been feeling fantastic. Am I fully recovered? Well I need to make sure that I’m NOT just on a long lucky streak. Truth of the matter, I never felt this good in years, like in 10 years or more. Yes, I had my brief honeymoons every now and then before but this feels like a cut above.

What did I do, some may ask and my simple unsatisfying answer is: Hard to say. I tried so many tweaks over the years (you can check this thread) and exhausted countless recovery protocols. That said, I emphasized on gut function over and over because it’s the one thing I’ve been paying so much more attention to as of late. Here’s is the part that is most dazzling: I found that my erections are largely related to my gut. How so? Ok so I’ve been doing more reading on the effects of inflammatory response on bodily functions (including libido and erections) and in order to establish a link I decided to become the Guinea pig for one more time.

What I basically did is research different Probiotics with different bacterial strains. I intentionally decided to exeriment with two different probiotics that contain different bacteria.

Probiotic X: Contains specific bacteria that is scientifically proven as anti-inflammatory.
Probiotix Y: Contains specific bacteria that is scientifically proven as proinflammatory.

I started off with the Probiotic X for 2 weeks and observed my reactions. I started to feel better in terms of well-being, sleep, digestion, less achy joints, and of course improved erections.

Then I dropped Probiotic X and started Probiotic Y for another 2 weeks. On day 5, I started getting brainfog, anxiety, sleepiness, nausea, headaches, flushing, nightsweats and morning wood have vanished into thin air! Do these symptoms ring any pills? How do they compare with PFS symptoms many are experiencing?

I did more reading into this and it appeared that Probiotic Y had caused a surge in intestinal histamine, which in turn had triggered symptoms of histamine intolerance. High histamine is known to cause exaggerated immune response (think autoimmune diseases).

Histamine is a hormone with numerous functions. Histamine intolerance is when the body can’t breakdown the extra histamine. High histamine is also linked to increased estrogens.

To control histamine one need to promote DAO enzyme that breaks it down. I tried taking Vitamin C, Magnesium (100-150mg), Calcium (300-500mg), Zinc (5-10mg), small dose B vitamins and they tremendously helped. In the case of other PFSers, it’s imperative to pinpoint the exact cause for this increased inflammatory response should it exist.

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Bravo doomed, it seems you’ve escaped the prison that is pfs! I’m gonna start focusing on the gut/digestion as I feel too many have had success with it. What are your thoughts on starting with low fodmaps diet, I definitely have ibs/reflux symptoms?

Thanks buddy. I liked when someone best described IBS as “diagnosis of exclusion”. IBS is a very general term when no other explanation is found.

My best advice for you is to get tested for:
-Breathing Test for H.pylori
-Breathing test for SIBO (Hydrogen &Methane)
-Endoscopy
-Antibody tests

I found I had SIBO (Small intestine bacterial overgrowth) and took a course of specific antibiotics to overcome it. I also took Rx drug for candida. Then I went on Low FODMAP diet for couple months. My initial symptoms (bloating/diarrhea/constipation/cramping/gas) were largely gone and my mood was lifted. This is how I established a link between gut and persistent symptoms.

Get well soon bro.

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hey mate, please take a look at my story…
I never took fin/propecia/accutane/ssri… But in summer of 2016 during crash diet ,I developed identical symptoms to pfs…Diet was high in vegetables, etc, low to no carbs.

Symptoms include 0 libido, dry tired eyes, musky smelling arm pits, lack of armpit/groin sweat, low semen volume and force, genitals feel like rubber, high and tight scrotum, loss of aggresivness etc…

Total T has stabilized in the upper 600’s now.
Dht 176 (350-850)
E2 12 (11.5-35)

GGT, ALT, Bilirubin, Dhea-s, Creatine, Cholesterols All elevated…

I have normal t upper 600’s , low dht 176 (350-850) low e2 12 (11.5-35)

You are right something fucked up e2 in me as well. I tried taking soy milk for 2-3 weeks and e2 came back even lower… I tried creatine for dht also, and it also lowered it…?!