My (IHP) Full Sexual Recovery from PFS - Story and Regimen

#1

Hello all, I hope everyone is doing well, at least as well as they can with this god awful disease.

I just want to report that I have made full sexual recovery. All that is remaining is residual brain fog, which is improving monthly. If all continues at this rate, I should be mentally recovered by June/July. Also, I have been fully sexually recovered since October give or take, and I have been med/supp free. Given the many false recoveries, I have decided to wait these 4 months, because we all know that PFS can easily come back. So far, it has not come back.

Just a little background:
I had all the side effects, everything. Here is a list I had to make for legal.

HOW DID SYMPTOMS START?
In 5/04, intermittent at first and then gradually increasing, the first symptoms were:
• stuttering
• word slurring
• word searching
• word confusion
• poor memory
• word hesitation
• change in handwriting (signature)
• digestive issues: indigestion, belching, flatulence, constipation & feces were small dark brown and pellet sized
• bloating in the lower abdomen
• testicular pain
• bloody stools
• intermittent anal itch
• heart palpations
• shortness of breath
• extreme thirst
• minor food cravings

HOW DID SYMPTOMS PROGRESS?
Developing around 10/04: All previous symptoms increased in severity with the addition:
• poor libido
• erectile dysfunction
• decreased ejaculate volume w/ clumpy sperm
• loss of erectile sensitivity
• acne
• rosacea-like skin
• wrinkling of skin on the hands and around the eyes
• blurry vision
• nail beds began to fan out
• sensitivity to light
• frothy urine
• frequent burning urination
• insomnia
• depression/anxiety/suicidal thoughts
• extreme lower back pain especially when laying down
• headaches beginning to develop in sleep
• stopped up ears
• earwax build-up
• ringing in ears
• white tongue
• extreme fatigue
• increase in breast tissue (similar to a female’s breast)
• dry lips
• weight gain
• ridges in finger nails, finger nails no longer smooth, but ridged

HONEYMOON PERIOD:
I stopped taking Propecia 12/04, within 6 weeks, all symptoms subsided. I started Propecia again around 6/05. The symptoms resurfaced around 10/05 with the same severity as before.

HOW DID THEY PROGRESS?
Symptoms remained constant until 5/06 when present symptoms increased in severity with the addition of muscle wastage and sensitive teeth.

HONEYMOON PERIOD II:
In 6/06, I stopped taking Propecia again, within 8 weeks all symptoms disappeared. I started taking Propecia again around 11/06 and in about 2 months the symptoms slowly started emerging again with a general increase in severity continuing to increase in severity up to cessation of Propecia in 6/08
.
HOW DID SYMPTOMS PROGRESS
At 8 weeks post Propecia, symptoms resolved to about 75%. At 12 weeks, most symptoms returned with more severity than ever before especially severe acne and rosacea-like appearance.
New additional symptoms surfaced:
• penile shrinkage with a sort of hardening of the tissue
• rounding of face/chin

WHAT I DID
Now, I’m going to tell you what I did, and I understand it may be controversial, and a few will want to challenge it saying I never had “real” PFS, etc. To that, I’m going to say up front that I will not respond, and I will leave that debate to the more able and those among you who spend all day studying the “science”. I only cared about what worked, and more specifically, what worked for me. You can speak about hormone regulation, genome theory, etc. Don’t ask me any of those questions because I DON’T KNOW.

My theory is basically that the drug weakened our liver and gut, they couldn’t process properly, detox, whatever, then bile flow stopped, we got constipated, infection grew, the immune system became stressed, metal may have built up for some, and we never recovered. We are at differing degrees of compromise. Once again, is this right? I don’t know. Is it wrong? I don’t know. Did I recover treating this angle and theory? – Yes. You can argue the details.

Let me preface my recovery protocol with this – I DO NOT remember the exact dates, amounts, etc. It has been a year or so long process and I don’t recall to the last detail the dosing, times, etc. With that I will give you the basic outline of what I did. Oh, also, I have previously tried everything under the sun except TRT. You name it, I either have it, or have tried it pretty much.

Ok, so what did I do?

1. I had a very strict diet – I started with a 10 day fast (only water basically). I then eased into kefir and yogurt. I eventually started to add veggies and some chicken breast. No Carbs! I had this diet for about 4-6 months.  I also started juicing, and I noticed that it helped a lot. After about 4-6 months I started adding some things like once a week sushi ( I know rice carbs, but it was only once a week). I stayed with this diet up to around middle of August.

2. What supps did I take? – I started taking TONS of digestive enzymes with everything I ate. I also took them periodically throughout the day on an empty stomach. Not just one or two – I took 8-20!! With every meal! My reasoning? – I didn’t want ANY undigested food sitting around in my gut. I also started taking TONS of probiotics. Also at this time I started taking Wobenzyme, but after about two months I stopped because I felt it wasn’t helping. 

3. What Meds did I take? – [b]NYSTATIN[/b]! – I started out with the liquid taking 3 teaspoons a day, Again, let me reiterate, I don’t remember how I graduated the exact dosing, so don’t ask please. After about a week I notice it was really helping. After about 3-4 weeks of use I regained nocturnals. So what did I do? Yup, I doubled the dose to 6 teaspoons a day, then up to 9, topping out around 12-15. It was great and I continued to see improvements. I was now getting mornings. So, continuing with my logic, I eventually was able to source the nystatin tabs (don’t ask where I got it from) and I started taking 3 tabs a day with the liquid. I eventually worked up to 12-15 tabs a day plus 12-15 teaspoons liquid. I eventually stopped the liquid and just stayed on tabs as I felt they were more effective. Then I got a script for [b]Diflucan[/b] and started rotating that. I would take 600-1000MG for a couple of days, then take a month or so off. I didn’t want to tax the liver too much. I continued this from March/April to around the middle of August give or take. I also cycled [b]Phellostatin[/b] at 3 pills 3 times a day with the Diflucan. I would also stay on it a week or two after cycling off the Diflucan, though I didn’t always do that. There was no set pattern here. I took [b]Lufenuron[/b] – whole bags at a time for a week on, a week off, and just cycle it. I also took it periodically. Again, no set pattern. 

4. So life was going good, then I hit a break through – I started using these [b]Chinese herbs[/b]. [chinamedcure.com/](http://www.chinamedcure.com/) What did these herbs do? Well, they really hurt my stomach. I was shitting all the time (5+ times a day) and was very fatigued. They also made my erections near perfect after about 4-6weeks use. Libido was almost normal as well.

5. [b]Colloidal Silver[/b] – I took 16oz a day for a month or so, and then went down to 8oz a day.

6. [b]Diatomaceous Earth[/b] – The heaping teaspoon three times a day. This helped as well, and it also improved my mental faculties.

7. [b]Black walnut, wormwood, cloves[/b] – I took this cocktail in the morning, 14 days on, 14 days off. 

Supp/Med Summary:

1. Digestive enzymes with every meal.
2. Probiotics before every meal
3. Two Nystatin tabs upon waking, 2 at 10am, 2 at noon, 2 at 4, 2 at 8, 2 before bed
4. Diflucan – 600-1000mg 4-6 days on, take 30-45 days off. Repeat
5. Phellostatin – I took three pills three times a day. I took it normal when I took the Diflucan, but I also took it without the Diflucan as well. It is herbal based. 
6. Lufenuron – was intermittent and was not present during recovery section, though it could have played a part. I took an entire pack a day for a week, then took a week off. The dosing was not always consistent.
7. Colloidal Silver – 8oz in morning, 8oz before bed. After about 6 weeks I went to just 8oz before bed.
8. Diatomaceous Earth – 1 heaping teaspoon in morning, afternoon, evening.
9. Black Walnut Hull, Wormwood, Clove Tinctures – all in the morning. Make a cocktail of it and drink it down. Use dosing listed on the bottles.

What brand of supps did I use?
1. Digestive Enzymes – MRM Digest All and Enzymedica Digest Gold – Yes I used both simultaneously. iherb.com/Enzymedica-Digest-Gold-Enzymes-240-Capsules/16790?at=0
2. Probiotics – PB8 iherb.com/Dr-Ohhira-s-Essential-Formulas-Inc-Probiotics-Professional-Formula-60-Capsules/13439?at=0
3. Phellostatin - iherb.com/Health-Concerns-Phellostatin-Phellodendron-12-270-Tablets/31072?at=0
4. Lufenuron - shop.owndoc.com/p-170/lufenuron.html Get over your “it looks like a marketing page” bullshit.
5. Colloidal Silver – I made my own since I took large amounts. I used SOTA’s silver pulser to make it. sota.com/silver-pulser.html
6. Diatomaceous Earth - amazon.com/gp/product/B00404YRKG/ref=pd_lpo_k2_dp_sr_3?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B00025H2PY&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=01BTP1BE28S1N8JYEM5Z
7. Black Walnut iherb.com/Herb-Pharm-Holy-Basil-1-fl-oz-29-6-ml/9212?at=0

Great, now that is my supps and meds, now I’ll provide a little timeline so you could see what I did. I recovered right around the end of September early October.

11/10 – Started fast, new diet, started wobenzyme
12/10 - introduced nystatin liquid, still new diet, still wobenzyme
1/11 – Still on diet and nystatin liquid, stopped wobenzyme, starting getting good nocturnals
2/11 – Still on diet and have upped nystatin, great nocturnals and returns of morning
3/11 – still on diet, got nystatin tabs, tried some Diflucan, started banging again. Granted, it was difficult, but was able to work.
4/11 - Same as 3/11 added Lufenuron and Phellostatin – more banging libido improving.
5/11 - Same as 4/11 – sexual improvements continue, erection quicker and easier to obtain.
6/11 – Same as 5/11 but started Chinese Herbs – almost normal erections, libido improved further. Alsp, around this time I started taking more liberties with my diet – hamburger, tacos, not much, but a little.
7/11 – Same as 6/11, added DE, Black Walnut, Wormwood, Cloves and Colloidal Silver – WHOA! Big break through this month. Sexually almost normal.
8/11 – Same as 7/11, kept going, pretty much normal.
9/11 – Same as 8/11 – had eye surgery, stop taking all supps/meds 2-3 weeks post op I recovered. I have not taken any supps/meds since. Actually, I’m kinda nervous to try anything.
10/11-present sexually recovered, working on remaining brain fog, which has improved
immensely. My diet has been pretty normal. I can eat anything and no changes in health.

FAQs
Ok, I’m going to answer a few quick questions I know you all have. Being a member for this board for years, I know the common questions. Basically, I can only tell you what I did, not what you should do.

1. Hey IHP bro, can I take supplement such and such instead of the one you took? – I don’t know, can you? I’m not sure if it will work the same. I can only tell you what I did.

2. Hey IHP bro, can I take different dosing from what you did? – I don’t know, try it. I can only tell you what I did.

3. IHP bro, can I try this other med instead of what you used? They are supposed to “do” the same things in theory – I DON’T KNOW. I can only tell you what I did.

4. IHP bro, I just read a cool article/study/doctor told me that I should try such and such, can I do that with your reg? – I DON’T KNOW!!! I only know what I did. You can give it a try I guess.

5. Hey IHP bro, I was thinking that you take too much of such and such, can I change the dose? – I DON’T FREAKING KNOW!! I only know what I did.

6. Hey IHP bro, I have been doing such and such, do you think I can throw your reg on top? – I DON’T KNOW!! Give it a shot.

7. Hey IHP bro, can you tell me in detail when your erections came back, how did they feel, etc? – Look, I didn’t write all this down in detail – my dick works great.
8. Hey IHP bro, just how bad was symptom such and such? – Look, they were ALL BAD!! I’m not getting  into details of every single one. I was VERY sick. I know what PFS is.

9. Hey IHP bro, I don’t understand how a 5ar inhibitor caused infection. I mean look, there are numerous studies all showing how it affects hormones, don’t you think it was that? Or a genetic change? Or something else? – Look, I DON’T KNOW!!!! I used to read studies, theories, abstracts as well. NONE of it worked for me – the end. I don’t give 2-shits about freakin theory anymore. I know what got me better- THE END. 

       10.  Hey IHP bro, do you have hormone tests? I always read about hormones, and the testing, and I really have to see some numbers. I mean, I “don’t” know if you are recovered. We really need some testing. Can you post your tests? What was your T? etc, etc. – Look, I have TONS of testings..TOOONNSSS. I’m not posting it or outlining it. I will say this, at my worst E was 60, T was around 410, and DHT was 8. I’m now around E at 31, T at 824, DHT 57. I’m not going through my records to post hormones. I didn’t treat the hormone angel. I recovered from doing what I did above, not stupid hormones. I believe hormones are a symptoms of the body being sick. When it became sick it down regulated their production in order to provide energy, whatever, to critical systems such as the heart, etc. Once again, is this right? I don’t know! Also, I don’t really care about the theory at this potin. Just saying. Still have love for all the theory freak though. I used to be one. 

        11.Hey IHP Bro, I have tried one of your supps/meds and I didn't work. What should I do? - Dude, I DONT KNOW! Did you try all of them simultaneously? What about diet? I'm not going to entertain this questions beyond what I put here. I dont know! I listed everything I did that allowed me to recover. 

12. Hey IHP bro, can I send you a ton of emails and ask you to be my coach/medical assistant and beat this thing? – NO. If you have a pertinent question, then ask it in the thread. Since recovery I have had tons of energy, working like crazy and enjoying my returned life. Dude – I GOT MY LIFE BACK! I don’t really think about PFS anymore. Now, the board was like an extended family for me, and you all my brothers, and that is why I’m here. I’m doing my service to the family and reporting my recovery. I will make it a point to visit from time to time to answer questions publicly on the thread.
#2

Glad you are feeling better thus far, although looking through your post history you neglected to mention your use of Proviron, Androhard, Armidex, Arromasin, and Femara and other treatments. Why is that? Perhaps they played a role as well.

That said, there do seem to be a lot of “I don’t know’s” in your posts, and some descriptions (“change in handwriting (signature)”, “intermittent anal itch”) would not be expected to be associated with Finasteride use. How is taking Finasteride going to change your handwriting, for example?

I didn’t want to argue on this since it is your belief, but your theory is based on an “infection” concept which thus far, remains untested/unproven and does not fit the typical timeline of propeciahelp.com/overview (section"What is the Post-Finasteride Syndrome?"). Not everyone was constipated after Finasteride, either, so I don’t understand how that has anything to do with it. However, anything is possible I suppose.

You mention “colloidal silver” as a treatment. Unfortunately, it has typically been implicated in scams. Just something to be aware of.
quackwatch.com/01QuackeryRelatedTopics/PhonyAds/silverad.html

en.wikipedia.org/wiki/Medical_uses_of_silver

Regardless of this aspect, at the end of the day, if you are feeling better then that’s great. Hope it continues in the months ahead.

#3

a couple of questions:
1 did i understand well that you finally quitted finasteride in june 2008?
2 has shrinkage/change of penis tissue completeley healed?
3 you used a lot of medications and supplements, but what were supposed to help just sexual condition? for sexual condition i mean libido, erection and penis size and consistency. like for example nystatin for erections, whilst colloidal silver for brain fog etc. i’m interested just in sexual part.
4 did cialis work on you in your worst period?
5 i feel like i need a stronger signal from brain to achieve an erection, i need to be hornier than before finasteride to achieve an erection like if brain and penis are not connected as before. did you experience this feeling too?
6 was your sexual situation very changeable? for example on monday good erections while on wednesday almost impotent and apparently no reasons that could explain why.
question 4,5,6 are to compare my situation with yours because someone here told me about ihatepropecia that recovered using nystatin, candida fungus and other issues i’m interested in.

#4

You live in Las Vegas, right? Which doctors did you see?

#5

Nice questions, and I hope this helps a bit.

  1. Yes, that is pretty accurate.
    2.Yes, and it actually fluctuated a lot while healing, though it has been normal now for 4 months.
  2. Well good news, because my sexual aspect is completely normal. I’m not sure what med/sup treated the sexual part. I used them all, so I can only assume a synergistic effect. Once again, I did not use any one drug in isolation.
  3. I never used this stuff, though I took it once before long ago it didn’t work.
  4. I guess if you are referring to libido, then yes – I had no libido. Libido is normal now.
  5. When I was very sick, there was no erections really. Once I started down this path they were indeed intermittent. They slow improved, and hen became simi normal,and then more normal, and then normal.
#6

Hey Second, I have a few docs in Vegas that had written scripts, that’s it. Most of my docs were the PFS docs mentioned on the board, and they didn’t do anything but also write scripts. They can’t really solve this, at least that is what I gathered.

#7

This post sounds incredibly negative and bitter to me. Do you expect him to have the answers for those questions? he keeps repeating ‘don’t know’ for a very good reason. My symptoms began with anal and penile itching and this still persists and my handwriting goes to shit when i am brain fogged.

Itching can be a sign of inflammation, lack of blood flow, infection etc etc.

#8

Sorry you feel that way. I reviewed his post history and he mentions other treatments which he tried, but he did not mention them here. Curious as to why, although it could be because he feels they did not work and were therefore irrelevant. The comments on Colloidal Silver are self-explanatory per the quotes provided.

As he notes, probably not. Obviously there is no way to know which supplements did what, but I’m glad his situation is working out for him thus far. I’m not trying to be negative here, just pragmatic. You of all people should realize many have tried numerous supplements which have made little difference. So what is different about this individual, if this is the case? As he says, he doesn’t know.

Anyway IHP, wishing you good health and congrats thus far.

#9

IHP, you’re in Cooperstown. Congratulations! :laughing:

#10

You also mentioned you took dexamethasone, correct? Dexamethasone is an HDAC inhibitor. HDAC inhibitors have to date the most scientific basis for a therapeutic relief.

#11

Hi Mew, thanks for the support man. It means a lot coming from you. I have made it a long way, and glad that you can see recovery for what it is. It is HUGE to get your life back. I was most worried that you would not be understanding. I’m sure glad you’re on board - It means a lot

You’re right, I did take those other meds, though that was a long time ago, and if you think they stayed in my system for 18+ months, and then cured me…well that may need some explaining, and I would venture that you would agree a little far-fetched…but I agree too, anything is possible.

I also have been receiving many e-mails, and I don’t want to get into theory, official studies, etc. I used to read all those like MAD, and I understand that some may need a little more substance.

I purposely did not craft a slick theory to give some definitive explanation of “PFS”. Because it would be full of holes just like most every layman theory on this forum. I’m intentionally keeping it simple. And like Mew said, there are no “official” studies. But after years of trying to regulate hormones and taking all the usual approaches to PFS, I began looking at PFS in a different way.

I got interested in:

The effects of hormone alteration on the immune system
Digestive Health / Brain-Gut Axis
Inflammation, Permeable Membrane aka “Leaky Gut” (search pubmed.com if you still think this is not a real and COMMON phenomenon)
Pathogens - Fungus, Bacteria, Parasites

When I treated my body like it was a burning house – that is — when I focused on putting out the fire – first with great success with high doses of antifungals, and then by clearing out my bowels, flushing out everything, casting a broad net by taking products geared towards fighting various infections – THAT is when I had success. So with any great theory, I had to go back to the drawing board and ask, what works? If this works, then I need to readjust my understanding of what PFS is.

Will this work for YOU? I don’t know! But let me ask you: have all the hormones, anti-e, meds, etc worked for anyone long term on this board? If so, great!

I am sharing the particulars of my story so that those who are interested have a template and some inspiration. It can be done! My hormones are great now, without doing anything specifically for them – the body auto-regulated.

But the biggest take-away is not that what worked for me will 100% work for you. It’s that MAYBE you should look at your PFS illness in a different way, and maybe by exploring some of the above topics, you’ll find the right products, right doses, the right kind of doctors (hint: not PFS specialists or hormonal “experts”) and so on. I experimented with various products, but the underlying theme was the same: fight infection, restore immune function/gut health, purge the system of toxins…It was when I started adjusting my theory and treating this angle I found results. I have already received numerous e-mails of men to afraid to post that have regained some wood function within a week or two of nystatin use. With that, I say continue that angle, be vigilant, and don’t stop. It has taken me a little over a year.

#12

Can you give more details on the diet you followed? You mentioned avoiding carbs and digestive enzymes, is there anything else?

#13

I’m glad you are feeling better, by whatever means.

Note: Personally, I have explored some of the areas you describe and have not had any such success, nor have I come across studies relating Finasteride to digestive/bacterial issues. As you say, what works for you might not work for others. Most of the scientific literature on Finasteride relates to androgen/hormone alterations and neurosteroid deprivation, penile tissue structure changes etc and scientifically speaking this is where I and other researchers have been focusing efforts.

Nonetheless, while I may not agree with concepts such as “leaky gut” and “toxins” as a cause, if you feel your case was relieved through the methods you describe, then great. At the end of the day, if you feel better and have made improvements, that’s all that matters. Good luck.

#14

No problem, my diet was very strict, and I ate almost nothing for a while. What I would it was kefir and some yogurt. I slowly brought in some chicken breast and veggies, and then started juicing veggies. This really helped. I lost about 24lbs give or take during this time. I had to buy all new suits for the office lol. I was hungry at the beginning, though that slowly went away. I can only speculate that my body adjusted to the new low calorie intake.

I would avoid all sugar, and then I even cut out the dairy eventually - no more kefir and yogurt. In there place I just took a ton of probiotics.

I did this diet for a while, and then slowly started eating a larger varity of food over the summer. At around September/October I was able to pretty much eat anthing, and now I to eat anything. Man, I have really missed nachos lol. My diet has been normal for the last 4 months.

I hope this helped.

#15

Hey IHP, could you please explain how bad your sexual symptoms were? Did you experience…

Shrinkage?
Dark veins?
Insensitivity/numbness?
Penis feeling dead/lifeless?
Brain-penis disconnect?

Much appreciated.

#16

Sure…all of my symptoms are in my initial post. They were all BAD! There was times when it was almost game over. Brain-penis disconnect is very vague, but I had NO libido if that is what you mean. I couldn’t “feel” my dick, and the shrinkage made it even lose “feelable”. These are vague terms to describe a vague concept of “brain-penis” disconnect.

#17

Hi IHP, congratulations and thanks for the feedback !

You say you have been on a normal diet for the last 4 months : does this include some sugar and some carbs (pasta, rice or bread) that did not lead you to drawback ?
Are you free, now, from any drug/supplement, or are you still on some treatment ?
And during the year you followed that protocole, did the drugs (nystatin, etc) give you some negative or hard to cope with effects ?
Did you practice some sports or saved your efforts ?

Thanks for the answers and keep on that way ! :slight_smile:

#18

do you remember the dosage of nystaltin like 100.000 ui… or i don’t know… thx!

#19

5 it is not “simply” libido, i mean brain-penis disconnection that dgreene mentioned. some days i have low libido, some others i have good libido but if before finasteride i needed to be horny 6 from 1 to 10 to achieve an erection, now i need to be horny 9 for instance. this is what brain-penis disconnection is, and it is not simply e.d. because cialis, even at the highest dosage, does almost nothing for it. probably if you can’t recognize this feeling it means u didn’t have it. like i understood what libido was just when i experienced low libido.
6 Actually i’m not sure i’ve understood your answer. in my worst period (about 9 months) i could have no erections too, i mean in the recovery period was the recovery constant or not? on tuesday you were a bit bettr than on monday, on wednsday a bit better than on tuesday and so on or it happened that one day u were worse than few days before?

#20

It seems like your recovery is based on cleaning up inflammation. Inflammation is the cause of so many diseases. I have recently tested high for iron. Iron causes large amounts of inflammation in the body and parasites / yeasts / viruses all thrive in a high iron environment. In fact you can not eat raw selfish when you have iron overload because there is some virus or bacteria that thrives in a high iron environment. They injected mice mice without iron overload with 1 million of this bacteria and they did not get sick. They injected mice with iron overload with just one bacteria and they got sick / died.
Have you ever tested your iron levels? I am glad you are better. But do you think there is something that made you more susceptible to these problems? I am not sure what else it could be.

When you say your libido is back, you now find it hard to go a few days without ejaculating?