Author Topic: Free Flow Discussion about POIS  (Read 661297 times)

demografx

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Re: This may seem like a familar place.
« Reply #80 on: July 08, 2012, 11:15:18 PM »


Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)





« Last Edit: July 08, 2012, 11:21:22 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Stef

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Re: This may seem like a familar place.
« Reply #81 on: July 09, 2012, 04:21:24 PM »


Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)


LOL!

You can do it, Demo!!!!!

Stef






« Last Edit: July 09, 2012, 11:06:04 PM by demografx »

demografx

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Re: This may seem like a familar place.
« Reply #82 on: July 09, 2012, 10:59:39 PM »
There I go again, listening to a woman's Siren Call again.

That's how I got POIS in the first place!

:)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: This may seem like a familar place.
« Reply #85 on: July 10, 2012, 11:01:37 AM »
Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.

To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.

(see attached screen shot if you need additional direction)

Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential!   :)


Hi Hoping,

I appreciate very much your input. Poiscenter was formed precisely to try to organize the topics, making it easier not only for POISers but for researchers alike to follow given topics, without them being lost in a long string of posts, maybe never to be seen again.

But we have a mini-crisis right now. We are being restricted more and more at NSF, to the point that it is becoming very difficult to accomplish the very important things we need to accomplish. We need to GET OUT OF THERE, bluntly put. We need an area that is OURs, which this (poiscenter) is. Nobody can tell us what we are allowed to do or say here it is  OURS. If someone needs to talk about alternative remedies, the CAN, without being called a jerk.

We also vey much NEED to promote the research campaign, which we can’t do over there.

BUT One problem many POISers have, is  directly related to the “disease”. Many of us have attentional deficit, it often requires heavy concentration (for a POISer) to do anything new. A change over, from NSF to HERE is a big  deal. So the Familiar Place is an attempt to give them a place to make an easier transition.

We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space.
As Hoping says though, with just a little effort, you can set up your configuration either with RSS or using the new posts link, and try to help us maintain a distributed format, without losing your familiar feel of free flow of thought.

As always, us POISers, once we DO make a change and learn a new way, we usually find it very useful. Ask Demo about his new RSS link??

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: This may seem like a familar place.
« Reply #86 on: July 10, 2012, 07:01:44 PM »
Daveman writes, "ask demografx about his RSS feed".

Daveman, you are compassionate! I have now been waterboarded, er, awarded a Doctorate in SmartfoneRSS !

Dave, are we in the '90's tech era yet??
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #87 on: July 10, 2012, 10:11:20 PM »
Hoping, if this will reassure you, my intention is 100% in line with Daveman's, as he writes, "We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space."
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #88 on: July 12, 2012, 01:29:34 PM »
Re-printed from POIS Naked Science Forum  today:


My Dear Fellow POIS-Sufferers,

I've decided to formally step down from moderating this [Naked Science] forum.

It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
 
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers.  Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator.  I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.

You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com.  There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.  

Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also!  It's a great forum -- you can actually find information easily through specific threads,  instead of trying to read through some 700 pages of posts.

Best wishes to everyone!


Your friend,
demografx

« Last Edit: July 12, 2012, 01:37:36 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: This may seem like a familar place.
« Reply #89 on: July 12, 2012, 02:57:46 PM »
Re-printed from POIS Naked Science Forum  today:


My Dear Fellow POIS-Sufferers,

I've decided to formally step down from moderating this [Naked Science] forum.

It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
 
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers.  Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator.  I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.

You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com.  There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.  

Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also!  It's a great forum -- you can actually find information easily through specific threads,  instead of trying to read through some 700 pages of posts.

Best wishes to everyone!


Your friend,
demografx



I'm very very sorry it had to be that way Demo, but I'm with you 150%.

Look at the advances you speak of in your post above, all within the last year. It took 4 yrs to generate the first 1,000,000 page views and only one year to generate the last 900,000.

Now when we are moving and most visible, they cut the ground out from under us. And it was from the very activities that were moving us that we were “Banned”.

More than ever we need to have a free environment to do what must be done, to have POIS officially, scientifically and medically recognized, to find a cure and to get the word out to as many sufferers as possible.

Only with research was willow bark extract converted into aspirin. Now, the whole world has access.

Together, all of us here on the forum will work with you to find the cure.

Thanks for getting us here Demo, to where we are now and where we will be very soon. POIS free.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: This may seem like a familar place.
« Reply #90 on: July 12, 2012, 11:08:50 PM »

Mighty fine and powerful words, Daveman.

Thank you ever so much.



10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #91 on: July 13, 2012, 01:56:23 AM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

tantalus

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Re: This may seem like a familar place.
« Reply #92 on: July 13, 2012, 01:19:53 PM »
as an exception this  reply here on family feel topic because most new users come here too.

Recommendation? about NIACIN START
Dear Daveman or other Niacin avatars. Maybe its a good idea to write a manual for beginners somewhere  on pois center with everything to know about starting to use Niacin  for the first time,for new users like me. Or start a new topic "starters guide to niacin" We  will find the more guideline info about Niacin or Niacin-amide much more easy then, and are also able to skip al discussions beyond that theme for  later to read. It also prevents missing necessary info, because info about the first trial of niacin and experiences users had as they started, is spread over to much different topics.  

for me...I had to read so much, I forgot the most practical things to know for starting and how often and how long continuing the medication during the pois period after ejaculation.  ASAP.
[/color]

« Last Edit: July 13, 2012, 05:31:45 PM by tantalus »
4 years desensitized, health progr. average 70%  top 90%, ,overreaction stops 3X (herpes+meningeal irritation, sideeffects towards end ( hyperacusis), stopped at 4to1, retrograde after stop,re-entry soon. negative progesterone effect pois. . (new supervised med. trial planned soon) Niacin not tried

Ccconfucius

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Re: This may seem like a familar place.
« Reply #93 on: July 13, 2012, 02:23:48 PM »
if vitamin b12 talk picks up here this are my results.

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml

tantalus

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Re: This may seem like a familar place.
« Reply #94 on: July 14, 2012, 07:33:16 AM »
NIACIN ......I did discoffer* the search engine to read all niacin related topics..there are 86 replies !! [ to give the total 'picture' for beginners  for starting whitouth to much contradicting advises how to use during the pois days......  and how often....... and when exactly, etc  /color]

I do not like to ask here unnessecary questions already askt /answered, so i read them all before I come back here to ask my
questions. Daveman did give verry good  practical info for start , but i like to integrate the average meaning off other senior replies too. Daveman please wait replying here  til I come back here. 

* spelling-control put a red line here but does not give any clue why. ;>)
« Last Edit: July 14, 2012, 07:50:47 AM by tantalus »
4 years desensitized, health progr. average 70%  top 90%, ,overreaction stops 3X (herpes+meningeal irritation, sideeffects towards end ( hyperacusis), stopped at 4to1, retrograde after stop,re-entry soon. negative progesterone effect pois. . (new supervised med. trial planned soon) Niacin not tried

demografx

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Re: This may seem like a familar place.
« Reply #95 on: July 15, 2012, 05:22:36 PM »
Welcome to the Familiar Place thread of PoisCenter.com ! We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here.    


**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- or another forum member - - go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain.)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here.


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

Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post.  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CCconfucius"!

Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 4th button to your right!

Our alternate POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our 5-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.

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

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

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:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


POIS Research Studies available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. First POIS Research Study, 2002

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

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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


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 YOUR HEAD'! "





It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
:


And in Europe: Orphanet now lists POIS on their website. - Click here.

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 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
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" 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#.




« Last Edit: July 15, 2012, 05:44:46 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #96 on: July 15, 2012, 05:24:58 PM »

if vitamin b12 talk picks up here this are my results.

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml


Thanks for posting your results, Cert!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #97 on: July 19, 2012, 12:52:14 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #98 on: July 20, 2012, 10:30:46 PM »



$9,270.00 $9,350.00 $10,272.00 $10,302.00 raised    
THANK YOU FOR THE $30 TODAY!!!!
towards our $33,500 goal.


Click here to CURE POIS:





Click here to read more about The POIS Medical Fund






« Last Edit: July 20, 2012, 10:36:58 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Stef

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Re: This may seem like a familar place.
« Reply #99 on: July 21, 2012, 05:00:35 PM »
Hi All --

Someone made the first new donation yesterday to your research fund, for the month of July.   (This is in addition to the two monthly, automatic donations that come in from two forum members.).

Thank you for acknowledging him, Demo -- I hope he's seen it!!!!!

Your indiegogo crowd-sourcing campaign will bring in funding -- definitely!!! --> BUT YOUR HELP --> EACH OF YOU --> WILL BE NEEDED TO MAKE IT A REAL SUCCESS!!!

Every $ is precious!

Stef