Dr. Alan Jacobs Patients: Please report your experience

And what’s made that so hard is that being an anxious person, I haven’t been able to stop, relax and let myself calm down without thinking “Am I feeling any better yet?” for more than 20 seconds since last year. I’m intrigued by some of the recovery/partial recovery stories here – the ones that involve diet/nutrition/exercise etc. These people seem to chalk this up to different explanations, but I wonder if the common thread is just embracing a healthy lifestyle, both physically and mentally, and genuinely calming down. Easier said than done for someone like me though.

as unpopular as this may sound, I do believe the conditon is potentially self-limiting. The problem is how long and how much damage is occured in the interim.

I know exactly how you feel, man. I hate it.

I’m sure it’s a factor. Reminds me of what my friend that used to work in a hospital would tell me about cancer patients. Those who gave up and were miserable tended to kick the bucket much sooner than those who resolved to fight it and be optimistic. I’m not saying being positive can cure anyone, but extreme stress and misery can certainly impede the body’s healing power and normal function. I think a lot of it ties in to droit’s theory as well.

And I’ve seen throughout my life how health anxiety can become a self-perpetuating thing for me. I remember someone here claiming to have cured himself w/ a diet/vitamin regimen. He said it showed that it was “leaky gut,” whatever that is, and he got jumped all over. My reaction was: It probably had nothing to do with leaky gut – it was just a function of the guy living a really physically healthy lifestyle, which probably had all sorts of great hormonal and neurological consequences, and mentally convincing himself he was getting better, which encouraged a positive self-reinforcing cycle.

I agree. Unless you stumble across something that knocks everything into place (which some do) really all you can do to combat PFS is just be as healthy as possible and hope your body heals over X amount of months/years. I do think that mindset that you mention is important, too. Unfortunately I share your anxiety issues and it has been next to impossible for me to achieve that mindset. I still beat myself up daily over the regret and guilt and stupidity of taking it in the first place against my better judgement and gut.

It really is the worst feeling. It’s a Saturday afternoon in the summer and here I am, home alone checking this site, trying to crack the puzzle, and thinking about what life would be like if I hadn’t done this to myself. It’s hard to hang out with friends these days. Work is miserable. I’m not the same person I was just 1 1/2 years ago. But I’ve tried staying away from here, staying away from googling all of this stuff – I kept away for months, and nothing really got better. I passed the 1-year anniversary of quitting Propecia recently and it had a devastating impact on me. One year of my life, in my early 30s, given over to this. With no end in sight.

Can’t let the guilt get you. We did nothing wrong. Think about how many people use chemicals in the name of vanity. Almost everyone. We just were the unwitting pawns in a consciousless money grab by a corrupt organization. We are no more guilty than the victims of 9/11 who “chose” to be in the buildings when they were hit with planes. Merck’s act of terrorism was even more covert, and in my opinion, more contemptible than anything Muslims, et al. have perpetrated against our country. I hope this research shows conclusively the damage that Propecia has done, so that Merck will be forced to face the full brunt of justice - justice that ALL the victims of Merck’s poisons can rejoice in.

Not to be discouraging, but I guarantee you that at the worst Merck will pay a few billion in lawsuits. They will still profit from Propecia and no one will go to jail. They got away with KILLING thousands of people via Vioxx with a slap on the wrist. Also, Merck continues to re-apeal the lawsuits filed against them from family members of the dead. When you have so much money and power, you can get away with anything. They know that, and for sure they factored in the losses from lawsuits, but they still profit in the end so it was a good business model to promote and sell propecia.

Yup. I feel like the person I was just a year ago died and now I’m this shell, just kind of drifting through life. It’s pretty miserable.

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Maybe you are right. Maybe. However, comparing the Vioxx massacre with the Propecia nightmare is really a comparison of apples to oranges. To wit: Vioxx caused heart attacks. How many causes of heart attacks are there? Smoking, lack of exercise, poor diet, stress, age…the list goes on and on. Very easy to attack the plaintiffs from a legal perspective. Which is why Merck’s payout was so little in the Vioxx trials. Ken Frazier was the lead counsel, and he used a “scorched earth” strategy - lambasting the older victims of Vioxx for their lifestyle changes and insinuating that their heart attacks were caused by lifestyle, not Vioxx. Very plausible, very easy to defend. And yet - Merck still LOST quite a few of these cases. I actually take heart in that because if research shows some concrete cellular/chemical change in our bodies - what will Merck’s defense be? Do me a favor - Google “Genital Numbness” or “Genital Shrinkage” or any of our symptoms. Do you find anything? No. Why? Because these things just don’t happen in nature. Not like heart attacks. In addition - a heart attack is a one off event. Meaning once you have the heart attack your life goes back to normal. You may have a restricted diet, have to exercise more, but your mental/sexual well being is not compromised. Its a shitty bolt of lightning that if you survive, your life goes on as normal.
PFS? Its a fucking incurable disease. If causation is shown, not only should and will Merck be held responsible for our pain and suffering (the same as the Vioxx victims) BUT they SHOULD also be held responsible for finding a cure for a disease they created.(Not the case in the Vioxx trial.) Factor in the age of the victims in our case, 30 years younger, on average, than the Vioxx victims, and that factors into the consideration of monetary payout. Suffering with a heart attack at 65 much different than be struck with a life altering sickness at 25.
Maybe I am looking at wrong. Please let me know why you disagree. It seems to me that if causation is shown, Merck is up shit creek without a paddle. But I not a lawyer. Just an optimist.

Regarding my experience with Dr. Jacobs - I have consulted with him a few times on various treatments. After speaking with him for an initial period, I gave up hope for about a year before re-contacting him a year later. His registered nurse said she assumed I got better since she didn’t hear from me for a year but the truth was I was just frustrated from seeing no results and having a doctor that was too busy to offer personalized care. My impression on Dr. Jacobs is that he very much does believe in post-finasteride syndrome and has seen it in significant numbers in his practice but would like to believe he is more helpful in treating patients than is actually the case. I have not personally spoken with a single patient that has improved considerably with him so you have to take what he says with a grain of salt. I don’t think he has any bad intentions, but is not my personal PFS doctor of choice given his overly busy schedule and lack of resources to keep track or patient progress.

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I also re-contacted Dr. Jacobs for a follow-up. He seems to have many PFS patients around the world. He told me that he was successful with TRT in other PFS patients. However, he admitted that all of these patients are still on TRT.

I take it Jacobs has cured nobody on here ?

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Doesn’t seem like it. I have a phone consultation with him September 5th, had labs drawn for him. The thing is, my labs don’t look horrible yet my symptoms are incredibly severe, so what can he do besides prescribe Clomid or TRT

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I have an appointment with him in a few hours

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Can you let us know how it goes?

Yes. He basically reccomended clomid and eventually arimidex or aromasin if neccesary. He had stacks of paper from just pfs, and he said this treatment usually helps users feel better.

What dose?

50 mg clomid every other day, although i plan on starting 25 every other day. He also said i may have some thyroid deficits, so we are trying a t3 medicine before i go on clomid to see where that gets us.

I did same with Gordon I would use 50mg and I got worse the first couple weeks on it…Then i noticed improvement but i wouldn’t touch an estrogen inhibitors they do more damage not needed even on trt let alone clomid i would be careful