Post Orgasmic Illness Syndrome (POIS)

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Offline jivetalk

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« Reply #14050 on: 17/07/2011 13:45:09 »
Mellivora,

That is great news! I only wish I was in the UK.
Thanks for bringing this to the forum, and I am very glad we have another medical professional looking into this.

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Offline hurray

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« Reply #14051 on: 17/07/2011 14:08:03 »
I have searched on the internet to know more about the pre-ejaculatory fluid and it turns out that the liquid mainly originates from bulbourethral gland, also called a Cowper's gland.

I strongly see a connection from this liquid and my POIS symptoms as for several times I got some portions of the symptoms even when I did not have any orgasm. I only was sexually excited and got the symptoms with no orgasmic ejaculation in my previous POIS experiences.

This time when I experienced the symptoms after the release of the pre-ejaculatory fluid I thought maybe there is a connection between the contents of this liquid and appearance of the symptoms.

I justify the weakness of the symptoms in this case to the fact that there is less pre-ejaculatory fluid released. However, during a complete orgasm more of this liquid gets released and that might be a reason for the higher intensity symptoms after an orgasm.


I also get POIS symptoms from pre-ejaculatory fluid Mer - a minority of people on this forum have the same problem as we do. Semen is made up of many different "ingredients", including sperm, pre-cum and a bunch of other things (fructose, various acids, zinc etc).

So according to the theory which says that POIS suffers are allergic to their own semen, we could be allergic to any number of the components of semen, from one or two to all of them.

Different people are allergic to different things, so our "precum POIS" is just as real as full-blown "ejaculation POIS". When (eventually) medical science breaks semen down into all its different elements and finds out which parts cause POIS, I'm betting that precum will be one of the biggest troublemakers.

Of course that doesn't mean that we are not allergic to sperm as well as precum! Or fructose, citrate, phosphorylcholine, or some of the many other components of semen.

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Offline hurray

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« Reply #14052 on: 17/07/2011 14:35:20 »

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  [:)]

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!

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Offline victor.kons

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« Reply #14053 on: 17/07/2011 14:49:03 »
Hi All,

I've tried injection of 1% Niacin acid instead of XN today, the dose was 1ml. The initial feelings of this drug activity was that it is not as strong as XN and it takes more time to have the flush. The flush was a bit less strong as well I think. I had an O in 25 mins after injection.

Looks like Niacin Acid actions the same as XN for me, but I need twice the dose of XN or even a bit more, to have the same effect. Anyways - no POIS after 1ml dose of niacin acid - this is the result for now. But my experiment was not absolutely clean, because I had XN injection yesterday, so I need to try for a while Niacin Acid to be sure. Will keep you updated.

Warning! Don't try this on yourself without consultation of qualified medical personnel, you can make yourself permanent injury.

Victor
« Last Edit: 19/07/2011 21:09:31 by demografx »

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Offline B_Daniel

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« Reply #14054 on: 17/07/2011 15:47:10 »
Demo and Daveman,

Was thinking about POIS research...I was hoping to humbly suggest two things.

1. I was looking at the Poiscenter forum,- And thinking to myself, if I was someone who had POIS didn't really know anything about it and found myself at either of the two forums - There is nothing that easily introduces newcomers into our group. For example a 'What is POIS?', 'Do I have POIS?' and a 'FAQ'..that is easily found from the front page would help a lot of people when they land at the new forum. There is a lot of medical speak and theories which is the core of what we are about at the moment, but I was thinking it would be good to help people who know nothing ease into it...


I personally think that's a fantastic idea.  I can remember just a few months ago when I first found NSF.  Every night I read posting after posting, but it took so long to get caught up.  I just wanted to Yell "Please somebody give me the Cliff Notes on all this" - and I think that's exactly what we need. 

So, jivetalk as you said, we need a packet (Perhaps found under POIS center) that begins with a) what is POIS b) how do I know if I have it.  Then it needs to have c) Background information on the NSF and POIS Center groups, how we all came together, why we're here, a short daveman/demo bio, etc.  d) Short 1-4 sentence summary on each of the main hypothetical POIS causes (allergy, hormonal, regeneration, circulation...) e) list of main treatments, what % of ppl found help through them, how much to take / when to take f) Discussion of the few Doctors that are researching POIS and their studies so far g) What we're doing now (continuing with NSF, POIS Center, NORD donation fund, Waldinger's study that's going on right now, note to start keeping up with the posting's to find out the rest) h) Miscellaneous - to include: How to  search the forum with google, link to Animus's video, link to the POIS Forum Compendium, a link to B_Jim's Summary of all cases, a link to Girlwind's POIS video, a link to our POIS chatroom, a link to our POIS information website, etc.

This would be a large undertaking.  We would need people to Volunteer to do one Letter of the above, and then another volunteer to get everything emailed to them, to proofread, and compile all of this into a Word Doc, then to Paste it into a new thread titled "Introduction" on the POIS Center website. 

Then Demo's Welcome Posting on NSF can simply be a big Hello and a link to this Introduction Thread.

It's a lot of work, I know.
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline daveman

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« Reply #14055 on: 17/07/2011 17:45:48 »
Nice jivetalk, very nice.  I can't wait till my xanthinol comes now!  Been like over a week and nothing ><. 

Well, jivetalks tests are very encouraging. It might even be that JUST nicacin, when taken correctly (and maybe not like the rest of the world takes it, avoiding the flush) can work quite well, avoiding having to inject and find a special source etc....

Time and testing will tell.

How does Murphey do it??

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Offline daveman

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« Reply #14056 on: 17/07/2011 17:57:54 »

ANOTHER MAJOR MILESTONE HAS BEEN ACHIEVED FOR POIS!

Dear Friends,

We are thrilled to announce that POIS is now officially recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research, in the US!!


Go to: http://rarediseases.info.nih.gov/RareDiseaseList.aspx?StartsWith=P, then scroll down until you reach Postorgasmic illness syndrome.

NIH maintains THE LIST of the almost 7,000 rare disorders that have been identified to date.  Getting POIS added to that list brings us one step closer to diagnosis, finding the cause, and most importantly – finding the treatments that will alleviate the miserable condition! 

With strong encouragement and support from NORD, we approached the Office of Rare Disease Research (ORDR) via emails, citing the few studies about POIS to date. We were met with immediate understanding and compassion, and after several weeks, they concluded that it was correct to list POIS on their official list of rare diseases.

Some of you might think that this is only a list – but we know from NORD that this particular list is frequently used by scientists, universities, pharmaceutical companies, and even venture capitalalists who are seeking to either obtain funding – or to fund – rare disease research.

We are slowly but surely making progress.  The time for serious attention to POIS has arrived!

Don’t forget, your donations are happily received at:
http://rarediseases.org/about/support/research-donations/fg_base_view_p3

With these donations, professional investigators will work at puting all the pieces together and get rid of this thing for once and for all!!

POIS Forums,
Demografx, Daveman

« Last Edit: 18/07/2011 02:30:16 by demografx »
How does Murphey do it??

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Offline mellivora

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« Reply #14057 on: 17/07/2011 19:44:22 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

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Offline lauracostis

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« Reply #14058 on: 17/07/2011 22:45:05 »
Hi Everyone,

Apologies as usual for my sporadic appearance on the forum. I see there has been lots of recent activity I need to catch up with here! Well done.

I've been asked once again by Dr Goldmeier to shout out to any POIS sufferers in the UK. He's an author of one of the few scientific papers on POIS and is trying to conduct more research. He's widely published in medical journals and is based at St Mary's Hospital in London and Imperial College. He's part of a unit that conducts clinical research in sexual medicine.  He and his team really need more POIS sufferers to come forward and see him.

Dr Goldmeier is very approachable, and you can refer yourself to his clinic at St Mary's Hospital in London, there's no need to get your GP to do it for you. Just send him an email at:

David.Goldmeier@imperial.nhs.uk

What's more it doesn't cost you anything to go and see him (except for your travel to London). Its an amazing opportunity to get POIS thoroughly investigated. If Dr Waldinger has 45 or more POIS patients in the Netherlands (as suggested by his last POIS research paper), its hard to believe that there aren't at least that many sufferers willing to come forward in the UK.  Dr Goldmeier is willing to see any UK POIS patients and I think so far he's seen about 8. Simply get in touch with him by email.

Dr Goldmeier and his team seem willing and able to look at POIS from all angles including investigating any immunological connections as suggested by Dr Waldinger. Even an fMRI study, something many forum members here have called for, seems to be a possibility if he can get enough POIS sufferers to see him. So if you're in the UK, and haven't yet got in touch with Dr Goldmeier, please take a step forward for your own sake and for the rest of us in tackling this illness that's affected us all so badly.

I see there is much activity with NORD which is fantastic. I'll catch up with that. We need to pursue every avenue in getting this investigated.
This sounds like a great opportunity for patients in the UK which will also benefit all of us.

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Offline CertainlyPOIS

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« Reply #14059 on: 17/07/2011 22:52:54 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

Nice i guess we can all say to past doctor who is crazy now

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Offline demografx

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« Reply #14060 on: 18/07/2011 02:35:30 »

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  [:)]

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!



Thanks, guys!

(edit - red emphasis mine)

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Offline B_Daniel

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« Reply #14061 on: 18/07/2011 05:48:57 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

YA!  I can't wait to tell my next disbelieving doctor to "Look It Up, Buddy".... although maybe i'll be a bit nicer than that about it. 

Good work in getting this accomplished!
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline jivetalk

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« Reply #14062 on: 18/07/2011 09:24:40 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

YA!  I can't wait to tell my next disbelieving doctor to "Look It Up, Buddy".... although maybe i'll be a bit nicer than that about it. 

Good work in getting this accomplished!

Daveman, Demo - Great Job Gents...Very Very exciting times for POIS sufferers thanks to you guys.

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Offline jivetalk

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« Reply #14063 on: 18/07/2011 09:27:53 »

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  [:)]

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!



Thanks, guys!

(edit - red emphasis mine)


Demo, Hurray - Thanks for the heads up and warnings. If I decide to take this experiment to the next level - I will be consulting with my GP for sure. As it stands, I'm posting updates on the other forum under XN. But at this stage from yesterday's O, I'm feeling about 60% POIS.

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Offline Starsky

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« Reply #14064 on: 18/07/2011 16:24:25 »
Ok, a bought Complamin Spezial Xantinolnicotinat retard pills. It costs 62 Euro for 100 Pills. Injections are not produced in Germany any more. One pill has 1000 mg. Isnt too much?

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Offline Animus

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« Reply #14065 on: 18/07/2011 18:15:21 »
We have to stop going from one thing to another, and just dumping them if they don't work. We throw the baby away with the bath-water. When we could be learning from every failure. We just FAIL.

Don't we get tired of just failing?

I don't agree with these sentiments.  Yes, it's good to exercise some discipline when testing a new drug.  But, assuming the person has checked out the associated dangers and is acting responsibly, there is a HUGE amount of value in testing these drugs, even in a disorganised, uncontrolled manner.  I doubt any one drug will help all of us, but there may well be drugs which help many or most of us, and we can learn that through feedback on the forum.  The main thing I worry about is someone trying too little of a drug, or not taking it in the right way, and then dismissing it.  However, on the whole, that risk does not outweigh the benefits of cautious experimentation.  We just have to be especially wary when someone reports a 'negative' result.

I have spent the last 14 years trying various drugs, and seeing whether they have any effect on my POIS.  I assumed that maybe after another 30 years of experimenting, that I may find something that helps me manage my symptoms better.  When I found this forum, many years ago, I was really excited because then it seemed we could communicate our experiments to one another.  It was as if I suddenly had 300 lifetimes of experiments, instead of just one; in this light it seemed like maybe there would be a good treatment in only a few years.  This was partly my motivation to develop the questionnaire.  It was useful to see what everyone had already tried.

Finally, we are not 'just failing'.  People have tried things, like testosterone, fenugreek, etc., told others here about it, and they have also been treated.  Their lives have been saved.  So let us not dramatically undervalue the power of the experimentation that has taken place here, just to make a point.


Counterpoints, I agree...
« Last Edit: 18/07/2011 18:21:43 by Animus »

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Offline demografx

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« Reply #14066 on: 18/07/2011 18:27:39 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

YA!  I can't wait to tell my next disbelieving doctor to "Look It Up, Buddy".... although maybe i'll be a bit nicer than that about it. 

Good work in getting this accomplished!

Sadly, many idiot docs NEED to hear "Look it up, buddy"!

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Offline demografx

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« Reply #14067 on: 18/07/2011 18:30:42 »
Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

YA!  I can't wait to tell my next disbelieving doctor to "Look It Up, Buddy".... although maybe i'll be a bit nicer than that about it. 

Good work in getting this accomplished!

Daveman, Demo - Great Job Gents...Very Very exciting times for POIS sufferers thanks to you guys.

JT, thank you!!! And Dave and I will discuss your recommendations. Many thanks for YOUR thoughtfulness!  [:)]

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Offline daveman

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« Reply #14068 on: 18/07/2011 21:06:19 »

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  [:)]

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!



Thanks, guys!

(edit - red emphasis mine)

A couple of notes, aside form the warnings expressed of course:

First, I'm not sure that a high-dose is necesarily required. Some may need more, others less. But the critical part is that it produces the rush. So one should not take it regularly, which tends to produce a "resistance" to producing the rush, and therefore require higher doses to produce it.

If taken ONLY just before orgasm, a dose of 200 to 300 should be enough, which isn't necesarily "high". Also, taken this way it is not taken daily reducing the threat of liver damage even more.

« Last Edit: 18/07/2011 21:12:10 by daveman »
How does Murphey do it??

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Offline daveman

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« Reply #14069 on: 18/07/2011 21:39:35 »
We have to stop going from one thing to another, and just dumping them if they don't work. We throw the baby away with the bath-water. When we could be learning from every failure. We just FAIL.

Don't we get tired of just failing?

I don't agree with these sentiments.  Yes, it's good to exercise some discipline when testing a new drug.  But, assuming the person has checked out the associated dangers and is acting responsibly, there is a HUGE amount of value in testing these drugs, even in a disorganised, uncontrolled manner.  I doubt any one drug will help all of us, but there may well be drugs which help many or most of us, and we can learn that through feedback on the forum.  The main thing I worry about is someone trying too little of a drug, or not taking it in the right way, and then dismissing it.  However, on the whole, that risk does not outweigh the benefits of cautious experimentation.  We just have to be especially wary when someone reports a 'negative' result.

I have spent the last 14 years trying various drugs, and seeing whether they have any effect on my POIS.  I assumed that maybe after another 30 years of experimenting, that I may find something that helps me manage my symptoms better.  When I found this forum, many years ago, I was really excited because then it seemed we could communicate our experiments to one another.  It was as if I suddenly had 300 lifetimes of experiments, instead of just one; in this light it seemed like maybe there would be a good treatment in only a few years.  This was partly my motivation to develop the questionnaire.  It was useful to see what everyone had already tried.

Finally, we are not 'just failing'.  People have tried things, like testosterone, fenugreek, etc., told others here about it, and they have also been treated.  Their lives have been saved.  So let us not dramatically undervalue the power of the experimentation that has taken place here, just to make a point.


Counterpoints, I agree...

As far as I can see he was agreeing with me as well. Just in case the point was missed, it's not at all a matter of not trying things. It's a matter of approaching tests to better understand the results and to understand the real problem.

Sometimes success isn't just a matter of finding an ultimate solution. It's a matter of letting the wrong decisions lead to an appropriate decision.

As a matter of fact the whole XN situation is a good example. We don't throw the whole idea away just because there's one bad egg involved. Nor should we jump all over something and do "whatever" without considering how and why it works and what effect it could have on our system.

And we HAVE been responsible with XN. A careful approach. Understanding the different application approaches. Injectiable or no, with flush or no, daily or just before "O", and enough to begin to understand WHAT's going on, EVEN if IT fails, WE DON'T.




« Last Edit: 18/07/2011 21:48:26 by daveman »
How does Murphey do it??

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Offline B_Daniel

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« Reply #14070 on: 18/07/2011 22:58:15 »
We have to stop going from one thing to another, and just dumping them if they don't work. We throw the baby away with the bath-water. When we could be learning from every failure. We just FAIL.

Don't we get tired of just failing?

I don't agree with these sentiments.......

I just edited this a bit.  It didn't really hit what I was trying to say earlier.
Counterpoints, I have to say, that was a great counterpoint  [;D]  And I agree with you.  But daveman's point wasn't as off-base as you made out...  In fact a lot of it was spot-on.  Look at Victor's post back from last October about XN... we tossed around the info for a bit, had people talking about it, and then we completely forgot about it!  I think there was some throwing the baby out with the bathwater there. 

So I see where daveman was coming from.  I really think that what this comes down to is a difference in ideologies on how to attack POIS.  Counterpoints, you strike me as more of the school of thought of Try everything and let's find the one that works - you try something and if it doesn't work you make note of it and move on.  I think Daveman and his engineering background likes to try new things too, but doesn't simply ask if it works or not.  I've seen him analyze something new from the perspective of what we already know - Like the fact that Garlic, Fenugreek, desensitization treatments, etc. works somewhat.  He'll then try to figure out what the new substance has in common with the old, what properties could be contributing to it helping, and build upon that. 

Maybe our process does need to be tweaked a bit.  We're surely not perfect.  There's no doubt that it's a good thing to take a bird's eye view and re-assess our process every once in a while though.  Personally though I like that we have many different people all engaging in their own process.  That's what makes this forum so great. 
« Last Edit: 19/07/2011 05:36:44 by B_Daniel »
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline Mer

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« Reply #14071 on: 19/07/2011 00:43:59 »
What is XN?


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Offline demografx

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« Reply #14073 on: 19/07/2011 05:08:03 »


You can put me down to pledge $500 [to NORD-POIS].


Green, thank you!!!


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Offline demografx

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« Reply #14074 on: 19/07/2011 05:12:39 »

Hi Everyone,

Apologies as usual for my sporadic appearance on the forum. I see there has been lots of recent activity I need to catch up with here! Well done.

I've been asked once again by Dr Goldmeier to shout out to any POIS sufferers in the UK. He's an author of one of the few scientific papers on POIS and is trying to conduct more research. He's widely published in medical journals and is based at St Mary's Hospital in London and Imperial College. He's part of a unit that conducts clinical research in sexual medicine.  He and his team really need more POIS sufferers to come forward and see him.

Dr Goldmeier is very approachable, and you can refer yourself to his clinic at St Mary's Hospital in London, there's no need to get your GP to do it for you. Just send him an email at:

David.Goldmeier@imperial.nhs.uk

What's more it doesn't cost you anything to go and see him (except for your travel to London). Its an amazing opportunity to get POIS thoroughly investigated. If Dr Waldinger has 45 or more POIS patients in the Netherlands (as suggested by his last POIS research paper), its hard to believe that there aren't at least that many sufferers willing to come forward in the UK.  Dr Goldmeier is willing to see any UK POIS patients and I think so far he's seen about 8. Simply get in touch with him by email.

Dr Goldmeier and his team seem willing and able to look at POIS from all angles including investigating any immunological connections as suggested by Dr Waldinger. Even an fMRI study, something many forum members here have called for, seems to be a possibility if he can get enough POIS sufferers to see him. So if you're in the UK, and haven't yet got in touch with Dr Goldmeier, please take a step forward for your own sake and for the rest of us in tackling this illness that's affected us all so badly.

I see there is much activity with NORD which is fantastic. I'll catch up with that. We need to pursue every avenue in getting this investigated.



mellivora, thank you for the wonderful news about Dr. Goldmeier's enthusiasm about treating and researching POIS!

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Offline jivetalk

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« Reply #14075 on: 19/07/2011 12:45:05 »
Hi Everyone,

Not sure if anyone else has come across this. I just came across another Group which is very similar to ours with the same problem as ours. Except they call it sexual exhaustion/dysfunction.

http://recover.forumup.org/

You have to register to get into their forums, but the guys there are having similar discussions. Have a look!

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Offline B_Daniel

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« Reply #14076 on: 19/07/2011 14:34:35 »
Hi Everyone,

Not sure if anyone else has come across this. I just came across another Group which is very similar to ours with the same problem as ours. Except they call it sexual exhaustion/dysfunction.

http://recover.forumup.org/

You have to register to get into their forums, but the guys there are having similar discussions. Have a look!


Search the forum for http://recover.forumup.org/ and you'll see that the website has been brought up sporadically over the past 3 years. 

My own personal take on the SE forum is that it proves there are many more people with POIS out there.  It'd be great if our forums could collaborate in some form or fashion, or at least have a few people be a member of both and update everyone here with any progress or developments on their end - and vice versa.  I think the main difference between our groups is that our forum is very specifically focused on finding a cure, especially via a scientific, medical approach - and our posts are moderated in accordance with that, meaning we have very few off-topic posts.  From the perspective of a lifestyle diary and posts about daily living with POIS, the SE forum is basically a bizzaro world's NSF. 

daveman - would that be an appropriate explanation??
   
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline Habibou

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« Reply #14077 on: 19/07/2011 14:58:45 »
Mellivora, I sent you a PM about Dr Goldmeier.. do you know if he is up to work on a french POIS case? (Paris/London is very close nowadays!)

We should ask/warn the 1600 suffers from the other forum that we can donate to the NORD ! We would reach the exact amount faster !

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Offline daveman

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« Reply #14078 on: 19/07/2011 15:46:15 »
Hi Everyone,

Not sure if anyone else has come across this. I just came across another Group which is very similar to ours with the same problem as ours. Except they call it sexual exhaustion/dysfunction.

http://recover.forumup.org/

You have to register to get into their forums, but the guys there are having similar discussions. Have a look!


Search the forum for http://recover.forumup.org/ and you'll see that the website has been brought up sporadically over the past 3 years. 

My own personal take on the SE forum is that it proves there are many more people with POIS out there.  It'd be great if our forums could collaborate in some form or fashion, or at least have a few people be a member of both and update everyone here with any progress or developments on their end - and vice versa.  I think the main difference between our groups is that our forum is very specifically focused on finding a cure, especially via a scientific, medical approach - and our posts are moderated in accordance with that, meaning we have very few off-topic posts.  From the perspective of a lifestyle diary and posts about daily living with POIS, the SE forum is basically a bizzaro world's NSF. 

daveman - would that be an appropriate explanation??
  

It's very difficult to focus on methodical testing when the only thing you want is to find a cure NOW. And given that any group of more than two or three people have differing opinions on how and when things should be done, it's even more complex.

As it is, even here and on SMF, it's all we can do to try to maintain a focused vision of what POIS is, what causes it and how to approach the solution for a cure. But the focus, even though it may seem to make progress slower, makes it surer, and so, ultimately faster.

We, our POIS group, and the recovery.forumup group have much in common, as do many other groups that are directed towards resolving an illness or condition that is "different" or even rare. We both must fight the psychosematic stigma and bewildered and sometimes ignorant doctors. We are alone and stubbourn. Even another reason as members we tend to be ready to try anything, whatever the cost.

But in uniting our efforts, we must take great care. Sexual exhaustion is NOT POIS. And although certain solutions may be common, and certainly the goal is common, we MUST maintain our focus in POIS.

We may have Sexual Exhaustion people among our ranks, and they may have genuine POIS sufferes among theirs.

Both of our groups are open to all. If there's anything that can be gained in sharing, ALL THE BETTER.
« Last Edit: 19/07/2011 18:48:04 by daveman »
How does Murphey do it??

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Offline demografx

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« Reply #14079 on: 19/07/2011 18:11:18 »
About Niacin


From:        demografx
Sent:        Monday, July 18, 2011 10:32 AM
To:          G, MD   (demo's GP)
Subject:     Niaspan

Dear Dr G,

Is there any concern with my 500mg daily Niaspan? (someone posted this on the POIS forum).    THANKS AGAIN! demo

"High-dose niacin has the potential to cause damage to the liver."

--------------------------------------------------------------------------------


From:       G,MD
Sent:       Monday, July 18, 2011 2:20 PM
To:         demografx
Subject:    RE: Niaspan

It is true.  That is why we monitor your liver function.  Statin medications such as Lipitor and crestor can do the same thing.

 

edit - keep in mind that I am on DAILY niacin. As some members pointed out, this may not be necessary for POIS and actually might work poorly if the body builds tolerance to niacin, as I do - demo
« Last Edit: 19/07/2011 19:19:41 by demografx »

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Offline demografx

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« Reply #14080 on: 19/07/2011 18:20:19 »

Sexual exhaustion is NOT POIS. And although certain solutions may be common, and certainly the goal is common, we MUST maintain our focus in POIS.


Exactly right.

One outstanding example of the difference can be seen in the New York Times link that is posted for newcomers.

Most of those "post orgasmic suffering" examples are 1-day-or-less sufferers. POIS is characterized by DAYS of suffering, sometimes weeks.

The only reason we keep it there is that it is teriffic to see a psychiatrist telling the world that "post orgasmic problems are NOT all in our heads"

« Last Edit: 20/07/2011 06:19:57 by demografx »

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Offline silverandcol

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« Reply #14081 on: 20/07/2011 04:18:36 »
Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.

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Offline demografx

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« Reply #14082 on: 20/07/2011 06:15:10 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please!
« Last Edit: 20/07/2011 23:38:26 by demografx »

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Offline demografx

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« Reply #14083 on: 20/07/2011 06:36:47 »





For all our new visitors and friends!


Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php


Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.


We started a POIS Research Fund to boost our attack on The POIS Monster! Explained here:
http://poiscenter.com/forums/index.php?topic=125.0


We raised $2,150 in just the first 2 weeks, with much more pledged!


And your POIS fund donation is most welcome here:
http://rarediseases.org/about/support/research-donations






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Offline Vincent M

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« Reply #14084 on: 20/07/2011 08:16:54 »
Haven't checked back here much since I've been mostly on the new forum. Just read through the last like 8 pages and this niacin thing sounds pretty interesting. I'll add it to the list of things I need to try. Combating POIS is certainly worth risking my liver function.

I've been taking thyroid hormone for almost a month now and it's stopped my eye-burning, but caused some facial irritation that I find unacceptable. Besides that it's done nothing. The dose I'm on is still very low so I'll wait and see once the dose is raised by the doc.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline jivetalk

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« Reply #14085 on: 20/07/2011 13:33:12 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please! I wouldn't take it!!!

Hey Demo - Is that because Silverandcol noted that the packaging was a bit dodgy? - If I'm correct, Silverandcol would have purchased these Xan-Pro tablets from Anti-aging system, Xan-Pro which seem pretty legit. I was about to purchase some myself. In fact, I think I might if they deliver to Australia.

The Niacin seems to be giving me a Caffeine Like effect, where it is difficult for me to sleep after taking a high dose earlier in the day.


OMG: Dosage from Website:
As an anti-aging memory support, take one or two 150mg tablets three times a day. You may take up to a maximum of 12 tablets (1800mg total) prior to a workout or exercise.

1800mg!!!!!!!!! That should be enough to determine if it works for POIS or not :-)
« Last Edit: 20/07/2011 14:12:10 by jivetalk »

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Offline daveman

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« Reply #14086 on: 20/07/2011 15:27:03 »
I think we'll find that it's NOT the dose that's as important, as it is the histamine threshold level, which increases with regular dosage.

The dose taken should be greater than the histamine threshold. So if that threshold is low, a lower dose should be as effective as a high dose where the histamine threshold has been raised by daily consumption.

How does Murphey do it??

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Offline victor.kons

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« Reply #14087 on: 20/07/2011 16:07:05 »
I think we'll find that it's NOT the dose that's as important, as it is the histamine threshold level, which increases with regular dosage.

The dose taken should be greater than the histamine threshold. So if that threshold is low, a lower dose should be as effective as a high dose where the histamine threshold has been raised by daily consumption.
I fully agree with this statement. The dose higher than needed has the same effect as optimal dose, e.g. you can't get 110% relief from POIS, 100% is maximum :) .

Victor

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Offline Starsky

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« Reply #14088 on: 20/07/2011 17:14:03 »
Victor, dont you get some POIS from sexual arousal?

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Offline demografx

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« Reply #14089 on: 20/07/2011 17:52:09 »

Hey Demo - Is that [warning] because Silverandcol noted that the packaging was a bit dodgy? - If I'm correct, Silverandcol would have purchased these Xan-Pro tablets from Anti-aging system, Xan-Pro which seem pretty legit. I was about to purchase some myself. In fact, I think I might if they deliver to Australia.


JT, maybe I was too quick to "judge a book by its cover" ! So I toned down my warning. [:)]
« Last Edit: 20/07/2011 23:36:48 by demografx »

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Offline demografx

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« Reply #14090 on: 20/07/2011 18:06:55 »

Combating POIS is certainly worth risking my liver function.


VM, no need to take risks like that!

Just monitor liver function like I do (see my email above from my GP).

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Offline demografx

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« Reply #14091 on: 20/07/2011 18:10:27 »


You can't get 110% relief from POIS, 100% is maximum :) .


Very good, Victor!  [;D] [;D] [;D]

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Offline victor.kons

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« Reply #14092 on: 20/07/2011 19:02:52 »
Victor, dont you get some POIS from sexual arousal?
I do, but its very short term, less than hour I think.

Victor

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Offline victor.kons

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« Reply #14093 on: 20/07/2011 19:06:27 »


You can't get 110% relief from POIS, 100% is maximum :) .


Very good, Victor!  [;D] [;D] [;D]
I was kinda joking, but only slightly, higher doses of XN don't make me feel better. But changing lifestyle do make me feel much better.

Victor
« Last Edit: 20/07/2011 19:57:43 by victor.kons »

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Offline silverandcol

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« Reply #14094 on: 21/07/2011 02:52:55 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please!

Haha, no worries I am still alive.  After opening the package the actual container seems decently legit.  Its sealed outside and then on more right over the top.  I haven't tested them yet so I don't know if they will make me flush or what not.  Also it is made in like Great Britain lol.

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Offline CertainlyPOIS

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« Reply #14095 on: 21/07/2011 03:41:43 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please!

Haha, no worries I am still alive.  After opening the package the actual container seems decently legit.  Its sealed outside and then on more right over the top.  I haven't tested them yet so I don't know if they will make me flush or what not.  Also it is made in like Great Britain lol.
I have the ones from antiaging and have used so you should be fine. They are legit but you have to pay for that legitness.
to get flush use it without food

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Offline jivetalk

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« Reply #14096 on: 21/07/2011 04:05:50 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please!

Haha, no worries I am still alive.  After opening the package the actual container seems decently legit.  Its sealed outside and then on more right over the top.  I haven't tested them yet so I don't know if they will make me flush or what not.  Also it is made in like Great Britain lol.
I have the ones from antiaging and have used so you should be fine. They are legit but you have to pay for that legitness.
to get flush use it without food

CCconfucius, Have you tried the XN for POIS as yet?

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Offline CertainlyPOIS

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« Reply #14097 on: 21/07/2011 15:47:27 »

Just got my xan-pro tablets.  The packaging was a bit shady, just a bubble wrap envelope lol.  Will take a pill just for kicks to see how it rolls on me.  Then when I have no commitments, I will try it along w/ an orgasm shortly after.  Fingers crossed =D. Also hope it doesn't fk me up LOL.


silverandcol, CAREFUL, please!

Haha, no worries I am still alive.  After opening the package the actual container seems decently legit.  Its sealed outside and then on more right over the top.  I haven't tested them yet so I don't know if they will make me flush or what not.  Also it is made in like Great Britain lol.
I have the ones from antiaging and have used so you should be fine. They are legit but you have to pay for that legitness.
to get flush use it without food

CCconfucius, Have you tried the XN for POIS as yet?
no not yet, rarely heal.

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Offline jivetalk

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« Reply #14098 on: 21/07/2011 15:52:00 »
Niacin Pills Report #3:

Dosage: 300 mg about 60 minutes prior to O (3 x 100mg Tablets)

Had another very intense O's last night, but took the dosage above. You know, one of the ones where its very very good, but you're thinking towards the end and afterwards 'Oh no, im going to paying for that for the next few days and possibly weeks!'.

Anyway..No POIS after O last night...... went to sleep and was able to sleep (maybe I'm getting used to the Niacin). However, woke up this morning VERY VERY Hot. I could also certainly feel more blood circulation running through me...I Had to kick the covers off....But....still..No POIS.
After getting up and very suprised I had no POIS and was feeling quite good. About 1/2 to 1 hour after being up and about, I could start to feel POIS slightly coming on. Based on my second Report, where I felt that somehow the Niacin 'Wore off' I decided to take another 100mg tablet. 15 Minutes later, had the flush and the POIS receded....I think I have a plan..

2 Hours later - I Could feel me being on the verge of POIS again...so popped another pill. Same effect, the POIS receded. I did this five times today taking a total of 500mg, and I am sitting here prior to going to bed with very little signs of POIS. I would say throughout the day I had around 10% POIS, which is a HUGE difference for me - But that could just be because I was Soooooo concious of it.

I can't get my hands on any Slow release niacin, but that is effectively what I have done today - 500mg in Slow Release Form.

Notes:
1. I don't think it is actually the FLUSH that is curing the POIS symptoms. The Flush itself only lasts about 5 minutes at the most for me, actually feels quite pleasant - not too strong. However it is well and truly gone by the time the O occurs. As Victor has noted, he can O quite a number of times after XN, but I am sure that the FLUSH would have only lasted a very short time.
2. I do feel slighlty jittery on the Niacin, but nothing too serious.
3. As noted, I have had a little insomnia the past few times I have taken Niacin.
4. I can certainly feel increased blood floor/heart beats whilst on the Niacin
5. I would normally be in VERY heavy POIS right now, tired, lazy, very foggy brain. But I'm actually quite alert, right now, I would say maybe 5% POIS if Anything at all..
6. I also note, usually when I am in POIS  - and I Yawn - I feel VERY EMPTY. As if my Body is Lacking Something severely (vitamins or something) and need to sleep, not sure if anyone else gets that. I did yawn a few times today, but Nothing like a POIS yawn. Just more a normal standard Yawn - and kept going...
7. Going to keep experimenting to see if I can reproduce the results....
8. If this is a Placebo..I hope it continues  :-)

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Offline victor.kons

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« Reply #14099 on: 21/07/2011 16:39:22 »
XN Tablets Report.

Took 600mg, seems way too much, have a very strong flush in 6 minutes. And lol, I have a lobster's face, its all red. Never had such a reaction even with 1ml XN injections, seems 600mg indeed way too much for me, probably no need in such a high dose.

In half an hour after O - feel tired, looks like the heart is down... Liver seems reacting too, not good...

In two hours after O - heart is okay, but I have unhealthy feeling at the location of liver.

Result - no POIS after 600mg in XN tablets, but have unhealthy feelings at the location of liver.

Victor