JN's story -- former 2001 Yahoo Group Member

Also JN, can you list off your average body temp before and after treatment?

Mew, while, as you suggest, a research may shed light on the true cause of pfs, it is useless to scientifically investigate ideas that are false. JN is simply saying that he thinks that the research on androgen insensitivity is clearly false and does not need to be performed. Personally, I agree with him on this. I think that the androgen insensitivity theory is severely flawed. How do these scientists explain that many people (eg me) have low LH and low FSH despite low levels of DHT and E2. If our brain (hypotalamus and pituitary glands) was insensitive to androgen, LH and FSH would be high, not low. If, on the other hand, our receptors were hypersensitive, we would have a hyperlibido, but we don’t. I asked this question to awor 3 times but he never replied. Furthermore, how do the scientists explain that moonman1 grew muscles on TRT? How do they explain that people improved with dexa? How do they explain the improvements of theDuck and robocopp (see below), who used treatments that have little to do with androgens?

You don’t need to be an expert in anything to understand that the insensitivity theory is logically flawed. The facts I reported above cannot be explained by it or are in contradiction with it. I agree that most of JN’s points do not address the root cause of PFS because, as you said, other people tried to live healthily but saw no improvement in symptoms. On the other hand, I think that the research effort should be focused on causes of pfs that are not clearly in contradiction with people’s experience.

And aren’t the experience of those who recovered with dexa, T4, etc… a “documented connection to Finasteride use”? Why are these experiences constantly ignored? Furthermore, how can you say that “chronic fatigue” is unrelated to hypogonadism? You know that hormones are interconnected through complex feedback loops. So, acting on cortisol or T4 or T3 may well have impacts on T, free T, estrogen, etc, no?

Although “chronic fatigue” totally sounds like quackery, it is in agreement with some recoveries/improvements we’ve seen recently. In particular, that of robbocopp (viewtopic.php?f=6&t=4625&p=31432#p31432), who dramatically improved with biotin, a necessary “ingredient” for healthy adrenal glands. What do these stories have to do with hypogonadism? Nothing. And you know why? Because hypogonadism is not the root cause of pfs, but merely one of its symptoms. While the root cause of pfs needs to be established, we certainly know that hypogonadism has little to do with the root cause of pfs, otherwise we wouldn’t see these recoveries.

Also let’s not forget that ‘Denarion’ cured his erectile dysfunction by using finasteride again and i felt on top of the world for 10 days after trying finasteride again. I don’t think there is much better evidence to show that androgen insensitivity is not the root cause of our problems.

I will say again, that Awor and 40 are absolute heros for at least getting our problem into the lab but i recall Awor using his consumption of milk thistle and worsening symptoms as an example to support androgen insensitivity or whatever the theory is. I switched off from then onwards.

I think there should be a sticky thread with all recovered usernames in a list and a brief overview of treatment.

Nice.

Actually, awor getting worse by consuming milk thistle does not support the androgen insensitivity theory, especially considering that milk thistle is well tolerated by the vast majority. Milk thistle does many things and you can’t know which of its aspects cause a worsening.

m_81, you need to get some better examples of guys you say have recovered. One post on a bodybuilding forum from someone who only seemed to have weaker erections and more watery sperm as a side does not convince. Dury seems to me to have had a natural recovery, corrieovip has slipped back again and JN has abandoned treating hormones.

Plus, you yourself should have made a near recovery by now given how long you have been promoting and adhering to the treating thyorid and cortisol line.

If you want to argue about the merits or lack of in the androgen insensitivity theory, can you at least do it elsewhere and not derail JN’s thread?

I have an idea… Lets all just shut the hell up so the people who want to hear what JN has to say, can actually hear him. Instead of watching him defend his findings… BC quite frankly, arguing with Mew is like banging your head against the wall… Also, I have no desire to see what ANY of you write on this thread besides JN, because all ppl do on this board do is whine, bitch, moan, and argue about the dumbest shit imaginable. So please for the love of mike, can all of you just shut the hell up? Thank you.

JN, I am looking into the stool sampling for parasite now. My Gastro doctor wanted to run a few tests first.

I just did an ultra sound a week ago of my abdomen and it turned up polyps on the wall of my gall bladder. When I started researching gallbladder issues, I found that this can be caused by parasites. They apparantly like the environment in the gallbladder. So I certainly want to rule that out.

Guys instead of argue of whoes method is right or wrong i would really like JN to tell us more in depth how to diagnose and treat this using hes 18 point method im a very open minded individual and so is alot of people on this forum JN im really desperate at this point in my life and im going to be honest i dont think your method is going to work for the most of us but that being said i have nothing left to try so if you would be kind to post your methods i would definitely give it a try and see how it turns out.

JN, I applaud your open-minded approach to PFS and restoring your health. You’ve obviously come a long way from whatever ails/ailed you. For that you are to be commended. Bravo!

Nevertheless, I vehemently dispute the connection between Chronic fatigue and PFS. I run one of the first and largest sites dedicated to CFS and have combed through thousands of journal articles on the subject since 2002. I also suffered from CFS. In my opinion, the two syndromes are completely unrelated.

I will still track your progress with interest. Who can’t say it’s nice to come on this site and see a positive recovery story?

Hey guys :smiley: what do you suggest for me?

-Ive had serum metals tested, they are all fine, copper was high but now in range.
-Had multiple stool tests for parasites.
-Reverse t3 low/normal. Seems like jn is the only one to have an outragously high number here.
-Pyroluria is in range.
-I drink bottled water.
-Have had food allergies tested, negative.
-Eat healty, exercise more than regulary.
-Have sex with a loving girlfriend.
-3 different doctors have independently said my adrenal fuction is fine
Now could it be that my electromagnetic grounding is not good or that i was concieved on a tuesday?

If you clowns want to take anything from this or you make any improvements from this good for you. I havent.
The only problem i see is that you are diminishing the seriousness of pfs. It is a serious medical condition, and this is making us look like, well idiots.

Just as a disclaimer, I have not read through each post but feel I can add something to the conversation.

I have been familiar with chronic fatigue and have actually spoken to world experts for CFS about my Propecia related problems. Very decisively, it was determined that it did not resemble CFS for many reasons. One main reason is that CFS is not associated with sexual dysfunction and actually affects women more frequently than men. Additionally, the root cause(s) of CFS has not yet been identified and there currently is no effective treatment for the syndrome.

It shares similarities in that some PFS patients suffer from fatigue and cognitive dysfunction, the syndrome is not terribly well defined and often ignored and rejected by the medical community but perhaps fortunately what we suffer from (collectively) is not CFS.

Here is one example (admittedly not the best) of a study on CFS related to sexual dysfunction.

cfids-cab.org/cfs-inform/Cfsliving/vermeulen.scholte04.pdf

Hey, to be honest it’s only my argumentative nature that keeps drawing me back to this site!

Mew- why would you attribute PFS to a problem with androgens or their receptors? Because we all took a drug which is a 5 AR inhibitor? You’re looking at things too logically, and too coldly. Erectile dysfunction a result of androgen dysfunction? I couldn’t disagree more. John Crisler, when he replaces T in men, notes that there is very little improvement in erectile dysfunction. There are multiple factors involved in erectile function, and androgens are way down the list. Even ‘pseudohermaphrodites’ (intrinsic 5 AR 2 deficient males) can get erections, and they have zero intracellular available DHT (3 Adiol G). It is likely that zinc and magnesium are more important than the androgens/AR in sexual functioning. If one had to choose one hormone to improve ED, one would choose thyroid for sure (see the 2008 study I posted which highlighted that 79% men with hypothyroidism have ED). Erectile function, taken as an example from YOUR list (of how androgens work) is multifactorial.

That’s what scientific, laboratory based experients do; they assess individual variables against controls. What you will NOT learn from the forthcoming scientific investigation is how the body works to create an erection, or the delicate interplay between multiple variables (hormones, vitamins, enzymes etc) within the body to create muscle, or an erection, or a feeling of wellbeing, or energy.

And there certainly will be no easy cure with whatever you discover anyway.

The symptoms for PFS are the same as CFS, and certainly my version of CFS. I think you’re getting distracted by the ‘crash’ after discontinuation of finasteride. Whilst I agree there seemingly was a ‘crash’ for some men, there weren’t for others. I was so badly affected, I had nothing to crash from! And it doesn’t matter anyway, as it’s a red herring. It’s possible that the return of available DHT caused another stress response (with a rise in cortisol, giving some excessive horniness- as has been reported), then a conversion into say, rT3, giving a ‘crash’. Whatever the mechanism, it’s not worth getting distracted by. You need to remove yourself from your perceived aggressor, finasteride, and take a more balanced look at the symptoms you currently suffer from. More importantly is that the PFS and CFS symptoms are the same and there is certainly an UNDERLYING CAUSE(S) for our persistent suffering. Now, is that a single cause, or are there multiple causes with various parameters (nutritional, hormonal, environmental) which are ‘suboptimal’? I venture the latter, hence the 18 points.

I think I was predisposed to suffering from finasteride for the following reasons:

  • I was a late developer and pushed very hard by my parents, (maybe cortisol a touch high to start with)
  • I have multiple food allergies (eg) wheat, cow’s dairy + a few others, causing a stress response
  • I have pyroluria, since pre finasteride, quite anxious all the time
  • I was stressed at medical school, late nights, partied too hard…
  • Suboptimal diet (where most people have a suboptimal diet), some vitamin and nutrient deficiency

These above gave me an elevated stress (cortisol) response anyway.

Finasteride was thrown into the mix and the suffering began

  • likely that cortisol ramped up even higher to deal with the severe androgen deprivation (as much an environmental disaster to my body as a famine, drought, severe injury)
  • cortisol coverted t3 to rt3, body temperature lowered accordingly; lowering the metabolic rate to ensure survival after an environmental disaster. (a hibernation, survival mode)
  • the plethora of symptoms emerged (severe sexual dusfunction, no energy …)

I was kept in that state for years because

  • at a lower body temperature parasites thrived
  • continued to eat food I was allergic to (humans aren’t designed to tolerate cow’s dairy and refined wheat) thus stressing my adrenals continually
  • hypometabolic state ensured inadequate enzymatic processes, absorption of key minerals, nutrients
  • pyroluria stressing my adrenals

etc…

until the CAUSE OF MY PERSISTENT SUFFERING is identified.

Let’s say, hypothetically, that I’m right ( I think I am, as my recovery has been great), and that the problem IS multifactorial, and that the 18 points ARE valid and that a recovery IS based on identifying the PERSISTENT cause and slowly swinging those 18 points in one’s favour…(and I have used one’s erectile function as an example of how I believe the problem is multifactorial)…then a more holistic, less narrow minded approach into investigation and treatment needs to be adopted, surely? Would you still be willing to deprive yourself of scientific tests because they don’t fall within your narrow definition of ‘conventional medicine’? If so, how foolish.

JN

i don’t know jn,

i read here every kind of hypothesis that i think made me confuse

if we don’t find something in common in all of us (syptoms excluded) we r condamned to walk in a dark labirinth

JN, your mention of RT3 and the well known PFS crash interests me. Are you saying clearing RT3 was a key component to recovery for you? i think that when you were doing better before Emerson using T3 and other drugs also played a part in your new recovery.

Thanks for coming back and updating us

I found an incredibly insightful CFS forum

forums.phoenixrising.me/showthread.php?12980-Anyone-have-prostatitis-and-ME

Check that thread out - CFS and prostatitis go hand in hand

Did you just say zinc and magnesium and more important for erectile health than androgens? oh boy…

JN you have got off track just like Solon.
1-how gyno is related to CFS?
2-why many of us have got ulcers after using fin/dut/saw palmetto?
3- you don’t bleed in you anus in CFS
4-your dont shrink
5- your eyes don’t damage in CFS?

after using sawpalmetto (please stop saying I did not use fin so my sides are different. you used 5AR you get it) I bled for many months after pooping. was hard for me to wipe.

I think the reason is DHT has some protective effects on our cells/tissues.By reducing it our tissues/cells are injured or atrophied. Me, Keman and paximperia are examples.

here is cut and past from paximperia is posts
I have completely lost all sexual function after nearly two months of feeling like death with intense burning and stinging sensation in my genitals, testicular pain, scrotal retraction, and perianal bleeding, skin changes, numbness, complete fatigue, you name it

The Dutasteride seriously fucked up my genitals to the point they were bleeding/sore, and caused major psychiatric symptoms. I couldn’t even wear underwear without excruciating pain.

so you say our problem is CFS?
it is a big insult.
To me our DHT receptors have been blocked permannetly or for a long time. this damage is different for different users. There are some uses who have only mental problems like Jpanther who got just brain fog. Some got only sexual side as claimed by 19. I got physical sides first (4 months muscle swelling etc) and then sexual sides.

I personally could careless about how we look to anyone to be completely honest. Instead of arguing about why JN is wrong, how about we try to find some similarities here and try to make some constructive arguments that bring us closer to figuring out a better way to understand what is going on.

I read your post and find this very interesting. Didn’t you say you had crohn’s disease in another discussion? I think the crohn’s aspect is very interesting to this. Especially since I personally can eat only veggies and meat and see improvement, which is very similar to a Crohn’s diet. Although, the only difference I saw is that crohn’s people had serious bowel issues which I don’t have. Do you have stool problems? I also read that your main concern was just the sex drive issues? Maybe because your only issue is sex drive, that is why your other tests appear to be fine. I’d like to see someone with more serious problems try the same tests that you have done and see if they are the same.

Jesus christ this forum is disgusting.

JN has improved immensly…to a point that most of us would chop our balls off to get to. Instead of trying to belittle him… Let him tell us how he did it and what he thinks we should test fo, etc. If you dont “believe” him or r suck balls deep in another theory then stop reading and posting in this thread!

Half the idiots trying to prove him wrong are making false claims themselves.

Where r u getting ur i fo? If you look at the thyroid thread…about 85+% who have posted in there have a terrible t3:rt3 ratio or high rt3 levels…

JN’s current regime and success cannot be isolated from his prior HRT. Even if the current therapy is helping him he could have upregulated his hormones with years of cycling HRT.