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  4. Post Orgasmic Illness Syndrome (POIS)
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Post Orgasmic Illness Syndrome (POIS)

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Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7180 on: 31/03/2010 04:43:15 »
Quote from: demografx on 31/03/2010 02:01:16
Piracetam and other "smart drugs"
'A friendly word of caution'


http://www.deuceofclubs.com/write/drugs.htm

http://www.erowid.org/smarts/piracetam/
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7181 on: 31/03/2010 06:41:13 »
Quote from: RhythmSpring on 31/03/2010 04:43:15

http://www.erowid.org/smarts/piracetam/


RhythmSpring, I don't understand, what's your conclusion with erowid? How does it relate to my posting 'friendly concern' about piracetam? Please don't just randomly post links here as reply to others' links without explaining. This is a forum. A discussion. Thank you.

Example of conclusion, below: This study shows that "piracetam is not better than placebo in the recovery from cognitive deficiency."
Journal of Postgraduate Medicine
http://www.jpgmonline.com/text.asp?1980/26/2/116/985
« Last Edit: 31/03/2010 09:03:33 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7182 on: 31/03/2010 06:57:08 »
omerbasket, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:


Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only formal medical investigation on POIS by Dr. Marcel Waldinger,MD and Dr. Dave Schweitzer, MD.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

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

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For for over 3 years, our POIS forum has attracted over 150 POIS sufferers worldwide who have posted here, plus over 600,000 page visits. Not bad for a rare malady!
« Last Edit: 31/03/2010 19:50:46 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7183 on: 31/03/2010 06:58:36 »

omerbasket, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over 7,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7184 on: 31/03/2010 11:20:58 »
Thank you all!  [:)]
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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7185 on: 31/03/2010 13:46:06 »
Porke:
Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.

With regards to Porke's comments, in my experiences with doctors over the years, this is spot on. It is something that annoyed me in regards to my test and GH readings. At least these days you can get copies of your results. In the past (>20yrs) you generally would not be shown your results so you would never know. In decades past there used to be this mindset that the doctor knew all and you were a medical illiterate patient who wouldn't have the capacity to interpret any test result. Things are a lot better at least in that respect.
« Last Edit: 31/03/2010 13:47:56 by acronym »
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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7186 on: 31/03/2010 14:14:53 »
Quote from: daveyboy on 26/03/2010 01:29:03
hey everyone,

Ive been thinking about what/or if there could be a conventional scientific therapy for POIS with the technology currently available which could help people recover quicker.
Im pretty sure during the days of POIS there's a lack of Oxygen in the blood and to the head.

Daveyboy - I think there is merit is this interpretation of a major aspect of pois. I have never tried oxygen treatment because it always seemed an expensive option.
I can relate to it from the foggy mind aspect (frontal lobe congestion). I have also had a blood test that measured the oxygen to carbon monoxide ratio in my blood and got a poor result. (No treatment option was provided to assist in reversing this). I also had a brain spect scan (day after an O) and it came back marked as being not noraml in relation to blood flow. It was clear to see the RHS did not match the LHS in the scans I saw. Many CFS patients have poor brain scan results as regards blood flow.
I was initially offered an alzheimer drug, but because I did not suffer from the condition it was not subsidised and I think it was going to cost me near couple hundred dollars a week with no end point. (I did not notice any benefit while on it, but I took lower dose to make the drug last longer). I also have very low IGF-1 and this effects brain metabolism and I am pushing my doc to deal with this.
As regards the piracetam post...I have not tried this, but I did try the nootropic drug hydergine. I did notice an improvement in alertness but it was nothing too dramatic. A Red Bull drink would match it.
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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7187 on: 31/03/2010 14:42:48 »
daveyBoy wrote:
"Because of this, I dont feel POIS has much to do with semen."

I've oscillated on the seamen vs orgasm concept over the years. I notice pois is not as bad with vigorous sex as it is with masterbation for me. I tend to agree with you, but then why aren't there a lot more women logging on here if it was simply the orgasm. Even theories that link pois to candida and diet or prolactin or pregnenalone should still encompass women as sufferers. What is it about the male physiology that makes us suffer so. Testosterone is not the complete answer.
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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7188 on: 31/03/2010 14:58:05 »
Ok, so I saw that you were talking here about prolactin (I didn't yet read what you said about it - you know, I have more than 300 pages here to read...) and I have some kind of a theory about it (I don't know if that's my leading theory about the cause of POIS, it's just one theory):
I read that Prolactin reduces LH and FSH levels. Since, as I wrote in my previous message, both my FSH (which is under the normal values) and my LH (which is in normal values, but in those normal values it's pretty low) are low, It might make sense. Also, if I'm not mistaken (and please, correct me if I am) one of the things that might have an effect on us is drugs that increases the level of dopamine in the brain. Prolcatin, as far as I read, regulates or perhaps decreases levels of dopamine, and dopamine regulates levels of prolactin. These are two intersting lines I've read on the internet:
1) "Dopamine. Prolactin inhibits dopamine release, such as after orgasm, and is chiefly responsible for the refractory period".
2) "Dopamine gives you that feeling of wanting. One of the greatest dopamine blasts are from orgasms. But after the dopamine kicks in at the peak of the orgasm, a different chemical is release. Prolactin. Prolactin regulates dopamine levels, keeping them from getting to high. It also puts a damper on romantic affairs. Prolactin is what causes men to want to roll over after sex instead of cuddling. Womens reactions are usually later. This causes alternations in the couples dopamine levels".

So... Let's say this: perhaps the cause for our syndrome is dopamine (or even something else), but the cause for the problem with dopamine is prolactin? And this too, goes in two ways:
1) It might be that we have insufficient amounts of dopamine in our brains - and that after orgasm, due to prolactin, we have even less? (But, shouldn't the amounts of dopamine return to what they were before orgasm? And if we felt good before orgasm, and we have now the same amounts of dopamine, why don't we feel good now, after orgasm?).
2) It also might be, that we have sufficient amounts of dopamine in our brains, but for some reason after orgasm there is too much of prolactin which is releases, and the prolactin reduces too much of the dopamine amounts.
(and the third option should be a combination of the two first options).

So, I see here at least two ways that prolactin might cause this, or at least be involved: By decreasing hormones such as FSH and LH, and by decreasing the level of dopamine.


However, there are things that might contradict that. For exapmle, in the two case reports by Dr. Waldinger and Dr. Schweitzer, which demo kindly sent to me, the patients did have normal levels of FSH (I mean, one had normal levels and another had too high values of FSH - but definitley not too low as I suggested) and of LH (even though the one with regular levels of FSH did have a LH level which is similar to mine - he had 3.2 U/L, which is a bit low on a scale between 1.5 t 12 U/L, and I know of a scale between 1-20 U/L). Also, one of these patients - the one with high levels of FSH - was tested for prolactin, and he had a normal prolactin level (210 mU/L, while the scale is between 75-275 mU/L).
 
I would very very much like to here your opinion about it. I'm not a scientist and I might be missing things here. Also, excuse me if such things or responses to these things were written here before. This is a 304 pages thread (EDIT: now 305... and counting :-) ), and even with searching tools I think it would be very difficult to get answers.
« Last Edit: 31/03/2010 15:06:34 by omerbasket »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7189 on: 31/03/2010 17:48:51 »
Quote from: omerbasket on 31/03/2010 11:20:58

Thank you all!  [:)]


Omer, stick around, I'm sure we'll be thanking you as well for sharing all your experience with us! And thank you for all your contribution and trusting us so early in your participation at the forum [:)]

ps - Omer, I would highly recommend that you also test for "free testosterone", in addition to total. My endocrinologist and GP both feel that this is important. I think others here agree as well.
« Last Edit: 31/03/2010 17:58:50 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7190 on: 31/03/2010 18:04:11 »
Chat Room

I just wanted to report that I had a wonderful time chatting at length with another POIS forum member yesterday at the Chat Room.

When you go, keep in mind that some Delphi Forums (our host) people "wander" in to the Chat Room who do not have POIS. But they are generally friendly, and if you have confidential things to say to others about POIS with other people in the room, you can always use the "Whisper" function, which will keep it private between you and your chat partner(s).
http://forums.delphiforums.com/POIS/chat

ps - if other (non-POIS) visitors become too distracting, let me know and we can make the Chat Room more private (by not posting the name "POIS Forum" in the public directory).
« Last Edit: 31/03/2010 19:45:29 by demografx »
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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7191 on: 31/03/2010 18:20:32 »
Quote from: demografx on 31/03/2010 17:48:51
Quote from: omerbasket on 31/03/2010 11:20:58

Thank you all!  [:)]


Omer, stick around, I'm sure we'll be thanking you as well for sharing all your experience with us! And thank you for all your contribution and trusting us so early in your participation at the forum [:)]

ps - Omer, I would highly recommend that you also test for "free testosterone", in addition to total. My endocrinologist and GP both feel that this is important. I think others here agree as well.
Actually, yesterday I wrote the same stuff in my notebook (to remind myself to do that).
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7192 on: 31/03/2010 18:37:31 »

Omer, someone recently said it well about testosterone. I agree: for those of us whose POIS can be helped with T-treatment, MORE T than the average person needs is important, just in my opinion. I don't think we can be satisfied with just normal to low ranges. Of course this treatment should be administered and monitored very carefully, preferable with an endocrinologist.
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7193 on: 31/03/2010 18:41:47 »

Omer, if you're around, come on over to the chat room and we can.......chat [;D]
http://forums.delphiforums.com/POIS/chat
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7194 on: 31/03/2010 20:02:12 »
Quote from: Porke on 28/03/2010 12:08:57

Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.


Quote from: acronym on 31/03/2010 13:46:06

With regards to Porke's comments, in my experiences with doctors over the years, this is spot on. It is something that annoyed me in regards to my test and GH readings. At least these days you can get copies of your results. In the past (>20yrs) you generally would not be shown your results so you would never know. In decades past there used to be this mindset that the doctor knew all and you were a medical illiterate patient who wouldn't have the capacity to interpret any test result. Things are a lot better at least in that respect.


Hi, Porke, and acronym, I certainly agree with Porke's "barely normal is not OPTIMAL" conclusion, but please allow me to disagree with the FIRST part of Porke's post - about doctors not willing to admit to a problem.

When I was tested "normal" a few years back, I screamed and shouted to my GP and my urologist about needing testosterone for POIS. (I quoted 2 specialists, Dr Waldinger and a highly regarded Czech sex researcher). It worked (they probably just wanted to get rid of me, finally  [:D]), and they gave me T-injections with monitoring. They did put me through hoops trying to discourage me (I had to buy the stuff myself, running back and forth to the MD's and arranging shots with the GP's nurse), but I still got my way.

I'm now on T-patches and they work very well for my POIS. For that, I was tested in a much more sophisticated lab and with a highly regarded endocrinologist who is sympathetic to POIS.

CONCLUSION: we simply have to be more aggressive and take charge with physicians. If they balk, move on until you find a doc willing to "play ball"............with YOU! The fact is, when it comes to POIS: WE KNOW MORE THAN THEY DO!
« Last Edit: 31/03/2010 20:22:19 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7195 on: 31/03/2010 20:06:33 »
Quote from: Looking_for_answer on 29/03/2010 17:31:26
Quote from: demografx on 29/03/2010 06:04:22

NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


interesting. ill have to read that post. if its for a high quality study i bet we can find 30 person with 1000$. 1000$ is nothing for a high quality study..


Looking_for, as I mentioned, people at this forum have committed to about $4,000. If you have any ideas how to raise more, please say!!!
« Last Edit: 31/03/2010 20:17:07 by demografx »
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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7196 on: 31/03/2010 20:45:27 »
Quote from: demografx on 31/03/2010 18:37:31

Omer, someone recently said it well about testosterone. I agree: for those of us whose POIS can be helped with T-treatment, MORE T than the average person needs is important, just in my opinion. I don't think we can be satisfied with just normal to low ranges. Of course this treatment should be administered and monitored very carefully, preferable with an endocrinologist.
Thanks for the advice. As you mentioned later, I think it would be hard to get it. Anyway, I don't know yet what I want. I guess I'll wait until I start usin Concerta/Ritalin LA, than try again, and than go to the doctor treating me for this POIS issue (He is a psychiatrist and sexologist) and see what he thinks we should do next, according to the results under Concerta/Ritalin LA. In my mind, other treatments might be Weullbutrin (or other drugs that increase the level of dopamine in the brain), Testosterone or Bromocriptine (inhibits production of prolactin), but perhaps there would be other treatments that might fit as well.
« Last Edit: 31/03/2010 20:47:48 by omerbasket »
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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7197 on: 31/03/2010 20:53:11 »
ok, Price of Oxygen:

1) Oximeters - measure Oxygen Sp02 levels (saturation) in blood and pulse rate.
from $40 (£25) from ebay
to $300.

2) Oxygen cylinders like on oxyfit.co.uk
£20 for 8 litres, £100 for 110 litres for 55mins.
(they dont sell to US, but there maybe similar companys in US)

3) Home Oxygen Concentrators - provides as much direct-to-mouth 90% oxygen as you want (no refilling, converts air to oxygen).
from 450.00 US dollars (£230) from ebay from China or Australia. (certainly affordable).
to around $3000 for more sophisticated models.

4) Home-use Hyperbaric chambers
$5000-$30,000.
(it would certainly be an "eccentric" type purchase!... but I know friends who spend double that on new cars)

First, please be careful
I HAVE NO IDEA IF THESE WORK, WILL WORK, WILL HELP, OR ARE EVEN SAFE!!!
dont waste your money (I'll feel very guilty!)
without doing your research
AND SEE A GP FIRST

It was just a suggestion oxygen might help.

It would be good if someone could get some research done to see if the POIS effects are similar to/or a lesser version of the
'the bends' or Decompression Illness.
If it is, POIS symptoms could be potentially instantly treated.
Hyperbaric chambers are used to treat 'the bends' but I dont know if the home use ones do this!
'Decompression Chambers' maybe slightly different.
I really dont know.

Doctors who specialise in 'the bends' or (even top divers) will know what to measure in the body.
Im sure a doctor like this will be willing to help and carry out tests either way, even if you have to pay to use their hyperbaric chambers + get the expert monitoring.
If the hyperbaric chamber makes you instantly well and diffuses POIS then, i guess, its decision time on what to do about it, whether to get one.

Again, dont get your hopes up too much, all this is pure speculation.

There may be more simple local 'Oxygen therapy' specialists who can give you oxygen at a therapy type hour rate and expert analysis.
There may be local divers who have the more full-on chambers who can help.

http://en.wikipedia.org/wiki/Decompression_sickness
« Last Edit: 13/11/2014 08:45:36 by chris »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7198 on: 31/03/2010 22:14:18 »
Quote from: omerbasket on 31/03/2010 20:45:27

I guess I'll wait until I start usin Concerta/Ritalin LA


In addition to the testosterone, stimulants such as the above have helped my POIS, as well as my overall ability to concentrate/focus.

I have just had major, open heart surgery, so I'm concerned about the stimulants, but my team of doctors, including my surgeon, my cardiologist, my psychiatrist and my GP are all ok with it. I have nevertheless continually reduced the doses.

Low doses are one of the secrets to making stimulants work for those who respond. The low dosage prevents addiction and maintains effectiveness because the body's tolerance doesn't increase.
« Last Edit: 31/03/2010 22:43:50 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7199 on: 31/03/2010 22:16:41 »

daveyboy, thank you for your oxygen post AND for expressing safety concerns!

I'm still looking for a good, old fashioned neighborhood bar [;D]
« Last Edit: 31/03/2010 22:18:52 by demografx »
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