I would rather believe in the Foundation and the research that may be announced soon than believing parasite and copper:zinc ratios are the problem. There is a big difference between science and pseudoscience…
Bryce54- that’s the point he doesn’t know what the hell has made him feel better, that’s why it’s better left for the theory section than to make claims that “this is what you do to feel better” unfortunately I feel the need to jump in when science turns into pseudoscience as Jorbie states. I have PFS, developed it after stopping propecia for 9 years, within a week my legs and lower arms shrunk, body temp dropped to 96, skin thinned exposing veins, penis curves to the left with buldging veins. I can guarantee you parasites had nothing to do with this.
Thanks for the comical update, JN. I admit I lol’d a few times. Keep us informed of your progress.
Listen here Bryce, you have me all wrong. I truly wish I was just sitting at home tolling but unfortunately, Im in the military and am deploying “cowerdly” again and yes with PFS. I am getting to the point where I’m stick of these BS threads, all they do is lead others on to believe this shirt and cause people to waist money on bogus ideology.
Do you really believe some backwoods homeboy knows more than the top leading instututes looking at this problem, come on man it has been stated here several times the only way WE are going to get out of this is by supporting the foundation. These senseless theories are only hurting us as a group (ie waisting a $100.00 on meythlation test) and yes I am going to put all my “chips” in the foundations hands, you win wars by numbers. You bother are not going figure this out on your own. I have spent over six figures to including having most of my genome mapped out only to get me know where.
I’m not here to argue with you and I won’t. Good luck to you, cant wait to see what your next theory is!!! If you have any other imputs please PM me, so we don’t detract for this thread!!! Delta Bravo
@Mew,
I think it’s entirely reasonable to write at least a summary of his recovery STORY in recoveries section and then link to this topic here in Theories - section to see JN’s own claims & things he tried himself. There is no doubt about him being recovered and I would imagine it would be proper to at least maintain a some kind of regular updating/consistency of Recoveries section, as hiding recoveries might look bad for the lawsuits.
@Airborne,
Considering that I had confirmed by a real doctor of having adrenal fatigue, hypothyroidism and leaky gut + gut dysbiosis with official tests by reputable labs… I have all the reasons in the world to be concerned that what worked for JN. Adrenal fatigue definitely started due to finasteride for me with crashing and hypothyroidism got worse after it, gut floras role in this condition is unknown. I don’t want to waste time on defending myself/attack others, i got my conditions to treat, but you should see that burden of proof goes both ways: is up to you other people here to research these areas properly before making claims whether they are true or not. Give it some thought.
Have a nice, sunny day everyone.
Hi JN,
Just wanted to say a few things related to your thread, the Foundation and to the forum as a whole.
I follow threads like yours as much as any Foundation thread. I don’t see why me, you or anyone has to be 100% for the Foundation or 100% trying things out on your own. I can see them working in tandem and all of us benefiting from both approaches.
If your attempt to recover has lasted 12 years and you feel like you can confidently move on with your life feeling 100% cured then good luck to you. There are plenty of Foundation ‘zealots’ on the board so it’s great you’re here to balance things up a bit!
I suppose until more people start replicating your results in the short term using your methods, only then can people have more confidence in your methods and theories. Since you have written so extensively whilst going into things in detail, i trust your writings a much as anyone on this board. I don’t care if your attempt to recover has resulted in you being 100% cured or only a little bit cured (but you have forgotten how you felt 12 years ago). If i had to do the 20 odd things you mention to improve any of my symptoms significantly, i’m going to do it. I’m not really interested in whether your theories are right or wrong. So please keep any updates coming good or bad especially if people start wanting to replicate your results. Personally I’m going to look into what you have done and hope you would be available for further contact. I think others would be crazy not to as well.
I also support the Foundation as apart from hoping a ‘magic pill/ treatment’ is found i also believe it could help with any legal compensation and i think we all deserve answers on what actually happened to us. I also want Merck to be punished and for medical professions to get there comeuppance for their arrogance and neglect with our situation. Even if ‘a magic pill’ weren’t found i would settle for an improvement in my symptoms. Therefore It feels natural to back the Foundation, especially when the people involved are making such an big effort on our behalf.
So on the subject of us working together, JN’s postings and Awor’s recent ‘stay tuned’ post…. if the Foundation think they have found a PFS ‘marker’ or an ‘abnormality’ in PFS patients, would it not be a logical step to ask people like JN who feel’s improved/ recovered to undergo testing to act as a comparison? That was a question to you JN and the wider board. This would hopefully help confirm things for the Foundation and maybe get us closer to our goals including short term or long-term treatment protocols. It’s worth bearing in mind, that no one can say with any certainty if there is only one way to get significantly better from PFS. And JN, this would help validate your position (although you probably feel you don’t need to) and you also may benefit from a litigation perspective if PFS could be confirmed by the Foundation by a medical ‘marker’?
I also wanted to ask you specifically about your sexual function, as it’s my opinion that if that is working 100% then everything else should be. Do you really feel it is all as it was pre-fin 12 years ago – erection strength, size, girth, feel, libido, ability to hold an erection, orgasm etc.? Do you take any medication to maintain the sexual function such as Cialis or Viagra?
Its not that I don’t respect JN’s opinion, but considering how big our challenge is - changing the minds of the medical profession, public opinion and ultimately proving that Merck’s poison damaged our bodies - it does not behoove us as a GROUP to allow pseudoscience to creep into our story. Allowing stories like JN’s to be held as “cures” only perpetuates the myth that already exists in many arenas that the Propecia Help gang is nothing but a group of hypochondriacs trying to get rich quick. Allowing JN’s story to gain a foothold amongst our group is not only dangerous, but it might slow down the work that real science is starting on our behalf. Its taken years for our condition to be taken seriously - and this “cure” that JN purports does not further our cause. We don’t have the luxury to soothe JN’s feelings by accepting his “cure” as plausible.
I stopped taking Propecia on July 18th, 2011. Within two days - sexual function returned, libido returned, I lost 10 kg over the next month, insomnia went away, my mood improved. Then in mid September I crashed. A Sunday afternoon in Starbucks - I felt a dark cloud coming over me - and I crashed almost immediately. All symptoms returned with a vengeance - overnight. I’ve been stuck in that castrated state ever since. That timeline is very common for PFS guys - and the answer to the problem lies not with parasites and/or leaky gut. The answers lies in our cell machinery. So please - if you want to entertain JN - do so in private. To do it in public only hurts OUR cause.
If you don’t believe that pseudoscience is imminently dangerous, this came across my Twitter timeline today.
forbes.com/sites/stevensalzb … -70-years/
The anti-vaccine movement has convinced otherwise rational people that their children are safer WITHOUT vaccines…with disastrous result.
I don’t understand your comments about pseudoscience. JN has just named numerous medical factors/ conditions (none that i would otherwise have been aware of) and ways that he has treated them. He describes himself as functioning very well on fronts to the point of feeling cured. This is where i personally have a lot of interest. Whether his methods have addressed the root cause of PFS or his theories are right is another matter. That’s why i have suggested there could be an overlap with the Foundation depending on what they are doing. It’s that simple really. I’m not talking about anything in relation to respect or entertaining someone or soothing someone’s feelings. You’re getting a bit carried away with yourself there and generally acting like a bit of a drama queen.
All the things you mention about the ‘challenge’ facing us should be taken care of by the Foundation. The Foundation is a separate entity to this website and since our only active participation with the organization at the moment is through donations, so how can we be damaging it or slowing it down? I could see the concern that each and every person was shunning the Foundation in favour of spending $10K on individual treatments and nothing on the Foundation but i don’t see this being the case. I see 2 or 3 people investing both THEIR time and hard earned cash pursuing methods/ treatments, using themselves as medical guinea pigs and then being good enough to share their experience with the board.
There’s plenty of talk about bullshit theories and it’s a fair to say some of them appear bullshit. But they aren’t going to damage the credibility of our community/ this website as no one from the outside world no matter what their day job is could be bothered about reading each and every thread being discussed on this forum. People are being slightly petty when they mention this and need to lighten up. The website looks as professional as any website with lot’s of insightful information and news feeds. This is what people will pick up on if they can ever be bothered having a look around.
Not Yet -
Let me clarify…no matter how much you want to believe otherwise, this disease/syndrome is not caused by parasites, copper:zinc ratios, leaky gut, et al. (All of which have EXTREMELY flimsy supporting evidence…I’ve done the research this morning) Apply some common sense: men stop taking Propecia, and almost universally symptoms resolve. Are the parasites in the Propecia pills themselves? Maybe like the thing in the Matrix? Then after some time symptoms return. Are the parasites dormant during the recovery? Does my gut start leaking again? If you feel so confident, could you please try JN’s protocol and let us know of the results. That would be infinitely more useful than trashing the one thing that gives us hope. Drama queen? Are you fucking kidding? This disease ruined my life(among many others). That’s drama.
Based on your last post - rational thought might escape you. I will attempt again to clarify. I understand how desperate or dire the situation seems at time. These “alternative” methods might have some appeal. By entertaining them, and giving them validity, men may choose to funnel their money towards parasite test kits, or copper tablets. I am not sure how anyone with PFS could already be bad-mouthing the only organization that cares about us, and one that only exists because PFS killed the son of founder. By doing openly on the forum, it undermines their efforts, and it undermines the chances we have at finding a cure, because the funding it needs to help us is mostly dependent on the men on this forum. I normally would tolerate your open mindedness - but its my life at stake too, and your continued defense of pseudoscience and denigration of the PFS Foundation make a cure all so ever less likely to occur. I don’t know you, but we are on the same side. If what you’ve gone through is similar to what I’ve been through…I’m so sorry. No man should ever have to face this fucking disease. But we did and still are…and your posts may lead men that would fund the Foundation to put their money elsewhere. Please. Just. Stop. The only people that should want the Foundation to fail are Merck.
Is this the same “pseudoscience” that said Finasteride was perfectly safe ?
I’m sorry but you to take anything these pharmaceutical companies say with a pinch of salt.
We of all people should know just how corrupt the medical and pharmaceutical profession are.
PFS has being known about for over 10 years yet the medical profession chose to ignore the evidence that Finasteride was dangerous for their own financial benefit.
Vaccines in my opinion are far from safe the mercury alone in them should be cause for concern.
The media have dragged Dr. Andrew Wakefields name through the mud everytime they talk about him it comes across as propaganda people should be able to make up their own mind about him.
Jorbie, you are making yourself sound like a fundamentalist drama queen.
I think your energy would be more well spent trying to raise awareness and funds for the PFS Foundation instead of wasting your time and energy debating whether JN has actually improved or not.
Moonman -
Even though I wasn’t debating whether or not he got better, just the reason he got better, I realize my mistake. Thank you for setting me straight. I will do as advised.
Even though I wasn’t debating whether or not he got better, just the reason he got better
Well we are thinking along the same lines then.
I’m not going to reply to your previous post as i would just be repeating myself and i feel i’ve answered your queries in my previous posts.
But to clarify, i’m not saying I/ we should believe JN’s theories. The only way a theory is going to be proved/ disproved is through the Foundation. Personally i strongly believe it’s an androgen receptor thing anyway.
I just can’t see any serious reason why so many people get hysterical anytime someone says they feel better/ cured. It’s a subjective way to describe yourself anyway. If JN has been through this for 12 years, it’s plausible he has forgotten what he felt like pre-fin. But as far as cyber-faceless-sufferers go, i am prepared to put trust in JN’s observations on how he is feeling. This is due to the length of time he has suffered and the detailed way he fleshes out what he is trying to treat and how he has treated it. He seems to have knowledge on a medical level that no one else on the board has and is very descriptive about the benefits he has achieved.
So the dilemma is whether to trust in someone that seems pretty trustworthy and try and get better until the Foundation is able to come up with more answers or a treatment (whilst continuing to support the Foundation financially). Or be completely cynical and denounce anything out-with the Foundation as horse shit and potentially cutting off from the community/ Foundation, sources of information, potential test subjects, short term ways and long term ways for people to get better.
We could just use a more critical mind rather than people throwing their weight around the forum chanting out the new mantra that everything out-with the Foundation is horse-shit. I am viewing the Foundation as a longer-term thing whilst looking at any credible way to improve my younger years in the meantime. Surely both approaches can be accommodated and people can understand this?
The only real thing we should be concerned about at the moment in terms of how we can support/ affect the Foundation is through donations. If only half the board donated $500 then we would have $750K, which I’m sure I heard rumours of this being the initial potential target. Surely this is achievable in a Western society especially when someone has mentioned (in this thread) spending six-figures on their condition alone?
Excuse my previous reply to this at the top of my last post. Jorbie, i don’t actually know what you are saying and i don’t think we are thinking along the same line in any way. I’m assuming your thinking JN has improved or recovered by the process of time or by chance or some other variable unrelated to what he has been targeting with his various treatments.
I’m going on the premise that he has identified a number of medical variables (and ways to treat them) which a lot of us may have been affected by downstream of the root cause of PFS and this could be the only way he has gotten better. This is what is worth exploring more by others to see if they can replicate his results.
The theory behind what and why he is treating it i am assuming to be correct as i have limited knowledge on these subjects. Again this will require more exploration.
Whether he has addressed the root cause of PFS or mitigated it’s effects we may never know and will probably only ever be able to be confirmed by the Foundation. That’s why i suggested they may be some synergy between what he has done and what the Foundation is doing,
Any talk of the actual theory behind what causes PFS, whether it be cellular of parasites or whatever, i don’t see that as the main message JN is trying to get across. I think the Foundation has an infinitely better chance of finding that out than JN, but it may be a combination of the 2 and other sufferers may get us quicker to that goal.
JN how are you doing in terms of sensation? Is that fully recovered too?
Is this the test --JN-- has been talking about to test for gastrointerstinal parasites?
Hey chaps,
I’m back for some more chat. I suppose to update.
Just to say; whenever I return to this forum, I do so with a high degree of trepidation. Essentially I’m too embarrassed to read my previous postings as it reads something like a nightmare; my aggressive and often condescending behaviour has been very antisocial over the years, and I think reflective of the stress that I have been under in trying to get myself better, do a tough job, fight life on all fronts etc…
Anyway, just to update, I’m doing very well and am happy in life. A few brief observations:
- I believe this is multifactorial and that there is no single ‘cure’ per se. There are numerous reasons why we suffered such severe symptoms, and they all need to be addressed. Succinctly I think body temperature is a very good marker of one’s functioning. (reflective of zinc:copper ratio, thyroid and cortisol status and presence’absence of parasites/yeast infections).
- I know most people disagree with the above. They are free to disagree. I am only giving my opinion.
-
Currently taking 75mg zinc gluconate at night. (Zinc PICOLINATE was too strong for me).
When I take 30mg zinc gluconate for a few days I become more tired, less good at sport, my right knee aches, my muscles become softer, energy levels less.
As zinc reduces copper, I am (still!) trying to settle on the right dose of copper. Currently I am taking 4mg in the morning.
I need to check my zinc and copper levels in blood sample soon, but can generally alter doses according to how I feel. Then I aim to settle on a dose for the rest of my life. Note I am aiming for high normal zinc and copper levels, and thus a healthy ratio. There is evidence to suggest people with high zinc AND copper levels (in balance) are more successful people. Certainly getting zinc and copper right appears to be central to my treatment.
Please bear in mind that I have pyroluria (10% of people have this disorder) in which I lose zinc and Vit B6 heavily. I think the pyroluria was a predisposing factor to me being adversely affected by finasteride. -
I am taking 75mg DHEA sublingually per day (25mg morning, lunch, night). DHEA is essential for wellbeing and erectile functioning. It is central to my treatment. NOTE HOWEVER, it converts readily to E1, E2, E3. So I take aromasin. I’m still settling on dose of aromasin (exemestane).
- Bear in mind that zinc, copper, DHEA, aromasin all affect E levels, so I am effectively playing around with a few parameters, which makes things confusing at times. I am confident of settling on doses soonish.
- When I overdo aromasin, I feel tired, morning erections disappear, I feel edgy. When I underdo it, I feel bloated and sexual functioning worsens.
- Generally I can tell a lot by how I feel, and this is my main guide. I use many factors to dictate my treatment. (eg) I noticed an improvement in my finger nail quality when I increased zinc from 30mg to 75mg, after one dose!
- Bear in mind I have already eradicated my GI parasites (EVERYONE NEEDS TO DO THIS). My body temp is 36.5C currently.
To summarise and keep things simple…
- everyone needs to do stool DNA parasitology test
-everyone needs to undergo live blood analysis to look for systemic yeast infection
(Treat accordingly) - increase your body temp (use body temp as a barometer for treatment)
- optimise zinc:copper ratio
- optimise DHEA levels (with E management).
The above will take at least 2 years to do. Sorry. Just my thoughts.
My mood is very good.
My functioning is very good.
My sexual functioning is fine. Erections are 100% wrt, girth, length etc. Ejaculate better than pre finasteride (probably due to higher zinc levels currently). Libido not as high and not recovered fully but I’m still slightly messing around with doses.
I’ve currently overdone the aromasin in the last two days so morning erections this morning was not present, but I’m confident of recovery within a couple of days. I get nocturnal erections.
Energy levels excellent
No anxiety (well, very little/minimal)
Take care
JN
lol
I remember about 1.5 years ago after feeling fantastic with no symptoms after being on finasteride for 9 years the aweful attack on my body from those parasites. Literally a few days after my final pill those parasites attacked. They really are tricky little parasites, many guys on this forum take .5 mg to just 1 pill of finasteride and those little buggers attack them sometimes minutes after the ingestion of that dosage. They work fast and cause such havoc. For these poor people they seem to attack the testicles and penis first, just minutes after the first pill.