Why should I live?

General Discussion
#21

I’ve been through all the docs, the meds, the supplements like everyone else. I’m well aware of what we are up against. Where has your negativity got you? If the folks here responsible for the actual research had your attitude we’d be in the same place we were six years ago. This is the hand we’ve been dealt right now. We have to push forward for more media exposure and research and we need the support of everyone who has PFS.

I don’t get your point bringing up stem cell research as it is a key now to regenerative medicine, is an area of much current research and is in use now in some countries. Also I don’t understand what “the new Mmartin” is supposed to mean.

Science will care. Likely untold millions suffer from SSRI, Finasteride, Durasteride, Accutane, and saw palmetto sexual dysfunction around the world. And many many other conditions boil down to improper gene expression which is exactly our problem. We need to use that fact to “market” PFS toward research institutions. The ball has started rolling in that direction but we need everyone’s support to keep the momentum moving.

In the future if you feel the need to “vent” negativity maybe not do it on someone’s thread who is asking for reasons to live? This is of course his thread but I’m sure you’ll have a retort as it seems you always demand the last word. I might add that many of the severely effected here never get any “100% recoveries” at all. I’d imagine they’d give quite alot for just one afternoon to be their old selves and enjoy life. For that maybe you should feel thankful.

#22

Well I have very few, if not any medical historic knowledge, but I think it could be interesting to look into the past in order to foresee what could happen in the future: has it ever been in recorded medicine history long-term drug damages or genetic defects being later fixed by breakthrough discoveries and treatments?

#23

I do not believe doctors perscribed medications at the rates they do now and as we all know most doctors arn’t even aware of the basic mechanisms of the drugs they perscribe. The answer to your question is it may not nearly have been as much an issue “historically” as it is right now. I do know for us basic research has begun and there are strong PFS ties into many areas of ongoing research in gene expression. Obviously we hope to ride the coat tails of some of that work and pray for a few very lucky breaks along the way. I understand where your coming from and deal with the same feelings of hopelessness and anger as you. I guess the choice is simple- give up before we’ve started or do everything in your power to advance media awareness and research.

Not to nitpick and unless I understand incorrectly it seems our condition is, at least in part, epigenetic and not genetic. Again, this is just what I pick out from the research thread and is only my impression/opinion.

#24

I am very optimistic that research will point us in the right direction to try things which we never knew of and have never tried… i think we will find a treatment… this is my opinion, but i truly believe it, not just because of wishful thinking, but if research keeps digging deeper, it will point to something… if not, at least we tried… if it is determined there is nothing that can help, i will personally shift my focus from a treatment to revenge :slight_smile:… i mean that… period

#25

I am not depressed, but i didn t want to create a new thread, so i am posting here. I am going through the worst period since the first crash when i quit fin in 2006. It s been very hard, because i don’t have the same strengh to fight i had six years ago. I am so tired. Really. I used to pray to have inspiration on what to do, but even that has been hard to do, because sometimes the brainfog is so heavy. To make matters worse, the medications i used to rely on the massive crashes (alprazolam or bromazepam) seem to be causing pain on my kidneys, so i don’t want to use them anymore. It was a great help, i would use it for a couple of months, and restore my sleep and focus. Also, refined sugar is stressing my adrenals again (heart palpitations, insomnia, not able to calm down)… i thought i was free of that shit, didnt have this for three years. So here i go again, i have to cut all sweets, white bread… oh God. I am not thinking of dying or anything like that, but this time, the way this crash hit me is so strong, and i am sooo tired, that i don’t know what to do. I ve been laying in my bedroom and on the computer for a lot of hours, because it is hard to do anything else. I want to work so bad, but i can’t see how i can commit to a schedule being this way. I am running out of money, and sooner or later i will have to find a solution for that. It is becoming hard to explain to the rest of the family why i dont work, i really wish this condition could be oficialized soon. Even my parents, who know about it, are pressuring for me to work. They say it will make me feel better. Wish they could go in my head for a few minutes and see how it feels. I want to improve a little from the crash, before having a new job. Imagine starting in a new place, in the middle of a heavy crash. That s pretty much it, thought it would make me feel better to write down what i am feeling.

#26

sorry to hear about your recent struggles. I know brazilians and they are as tough as nails.

#27

I thought you had recovered after using prednisone or Dexamethasone?

#28

Prednisone and xanax. I did have a full recovery, but it turns out it was only temporary. I was able to have great, horny sex, was feeling great mentally. As weird as it seems, everytime i ejaculated i begun to lose a little bit of the recovery. Our bodies do not restock the substances we need in the same pace.

#29

Sorry you are back. How long were you recovered for before the bottom fell out? This is one of the single most disturbing things, being recovered all that time, thinking you are finally free from this and somehow, you end up back in the dark. I am really sorry man.

#30

I had two periods of full recovery (i felt absolutely normal, normal erections, sex, libido through the roof, clear thinking, good sleep, peace of mind, everything). First one was from February to June 2011, second one was from January to March 2012. What is hard is that you start making plans, looking for a job, i was even thinking about going to college again. It is impossible to make your life work in this roller coaster. And you are right, the hardest thing this time was the feeling of loss… you taste your normal life again and lose it all, very very hard… maybe it is easier not to have these temporary recoveries, because this way you forget how you were. At least i had a lot of good sex, ate lots of stuff i couldnt before, and took a break from this disease. I am dealing better with all of this today. Need to keep the ball rolling. Thanks for the support Lennon.

#31

I hate that you feel discouraged by these two recovery periods coming to an end, but they do show you two important things:

  1. There is nothing mechanically wrong with you. The fact that you got normal erections means that you aren’t suffering from Peyronie’s disease or irreversible nerve damage to the penis.

  2. They show that, given the right treatment and timing, you may be able to pull off a full and permanent recovery. The fact that the first one lasted so long might actually be a good sign for you.

Here’s what I would do if I were you. It’s also what every PFS sufferer should do, and what I am starting to do:

  1. Keep a symptom log. And by this I mean catalog EVERY symptom you can think of that is hormonally driven. This includes erection quality and quantity, ejaculate quality and quantity, skin oiliness/acne, energy level, etc. To keep the log accurate try to go to sleep and get up at the same time every day. Also try to pick a diet and stick with it.

  2. Get as many hormones measured as often as you can. See as many doctors as you can but be careful with medications before this step is completed. Track the hormones on a timeline if possible and you may find that you are having a hormonal cycle where Testosterone levels vary wildly and other hormones also go up and down. I strongly suspect this is what is happening to me and it seems to be what is happening to many other site members.

  3. Compare the symptoms to the hormone levels and present the results to a physician who is willing to lend an ear. Since many physicians don’t believe PFS exists you may have to go to another state to be believed but maybe not since the symptoms may well speak for themselves. Discuss treatment options with that doctor and when the best time in your cycle (and I would not be surprised at all if you have one, since many of us seem to) would be to start treatment.

  4. Continue the above three steps and hope that you are able to mount a full recovery. Also be optimistic that modern medicine will be able to uncover a treatment or cure.

I know I don’t really know your situation and we’re all probably in slightly different boats, but I think that the above approach could work for many of us. At the very least the logs could be useful in suggesting future directions for PFS research. Good luck with your recovery and to be optimistic the very fact that you have recovered briefly twice before at least gives you more hope than those who have never recovered. I’m not a doctor by any means, but I do have faith that a common sense approach like the one above could help many of us feel a lot better.

#32

Indeed, this is great news. However, on the other side, the crash proves there is something very wrong with my metabolism. One’s metabolism is supposed to adjust itself, always coming to the same stage it was genetically programmed. Since this was not happening after i quit fin, i artificially brought my metabolism to the state i had prior to propecia (a five year battle). I had the hope that if i could combine the right diet restrictions, exercise, build enough dopamine (through diet) and gaba (medication), and fight inflammation (medication), i would be able to lock in my metabolism in a state that would last. The fact that i was able to reach my goal (my body’s original way) live normally for a couple of months and it didnt stay that way is very disturbing to me. By logic, once you reach your natural condition, your metabolism stays there. Or at least it would help it kick start from there. Unless something has changed what your natural condition is. The gene switch off theory seems much more plausible to me now. Propecia may have changed some of our genes, so we are now all programmed to be hermaphrodite-like despite the fact that we have adult male bodies. We keep ejaculating despite the fact our 3 adiol G is below range. Of course this is not sustainable.
From this point on, i will change my strategy. I will keep regimens and a specific diet as a means to preserve my health for a future treatment. I also learned this problem is reversible, but the root is very deep.
To some extent, i was very successful. Even though i have been working for six years on my recovery, i never expected to reach such a great level sexually, as i had these last two months. I had urge to have sex, great visual pleasure, everything the same as it was before. Even the relaxing feeling after sex, lasted for the whole day, like the old me. It was amazing. Wish all of us reach that state again, in a sustainable way.

#33

this is bad.
That is way I don’t believe any recovery theory. I dismiss them and will keep dismissing until see some thing in black and white matched with physical well-being.

#34

Why don’t you think the recovery periods on just a part of your overall recovery? If you keep it up it might be that your recovery periods might get longer/more frequent.

#35

It is indeed bad news. JN recovered for two years didn’t he? and yet he is back here suffering once again. I cannot sustain a single improvement despite making numerous ‘brief recoveries’. In fact, I have eventually gotten worse after each recovery. This is very worrying.

#36

What about the people who are in the recovery section, or otherwise posted about 80-100% recoveries and never posted back, are they also back to square one?

#37

The rules for posting recoveries changed last year. Guys have brief periods of feeling “better” in some or all areas and want to believe (as any of us would) that they have recovered. I think the wanting gets the better of them and they declare themselves “recovered” only to qualify that later by saying “70-80% recovered” or even to go back to full sides. Personally, I havn’t seen any true cases of documented recoveries at this point. Not saying it will never happen but we have to persent a clear picture of what is happening before we can figure this out.

#38

Have any of them being contacted and confirmed that they have indeed gotten worse?

#39

I don’t believe any recovery. these are lies. not a proven recovery.

#40

I beg to differ. There certainly have been recoveries. Maybe they weren’t the more severe cases, but to say there have been no recoveries would be dishonest. There’ve been natural, sponteous recoveries from cancer and HIV, surely there’ve been recoveries from PFS.