Author Topic: Free Flow Discussion about POIS  (Read 583033 times)

kurtosis

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Re: This may seem like a familiar place.
« Reply #240 on: October 01, 2012, 10:22:50 AM »

As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.


I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)

One idea: use business address?
Another: use your initials only?
Another: use a box number?

Go through NORD? (nordnurse would have to approve this one)

Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.

The book will make you laugh at your own privacy issues.

Better than dying from them IMHO!! ;D ;D ;D ;D

You could always setup a temporary PO Box number.

demografx

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Re: This may seem like a familiar place.
« Reply #241 on: October 01, 2012, 10:51:12 AM »
Do you mean like at The UPS Store, where you can create a physical Postal "inbox" (with key to lock/unlock) for just one month?

Or did you mean the Post Office?

I also remember hearing that you can get mail addressed to you as "c/o General Delivery, Hartford, CT 06101" (your own city, state, zip)
« Last Edit: October 01, 2012, 11:03:42 AM 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 #242 on: October 01, 2012, 11:12:57 AM »



$9,270.00    $9,350.00    $10,272.00
$13,512.00 raised!
 
THANKS, $1,000 DONOR!! towards our $33,500 goal.


Click here to CURE POIS:





Click here to read more about The POIS Medical Fund

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 familiar place.
« Reply #243 on: October 01, 2012, 11:57:47 AM »
I presented the Selwyn Dexter study to my physician today: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/

She found it interesting and wrote me a prescription for a progesterone drug called norethindrone (the US version of norethisterone).  I also had labwork ordered for my thyroid, hormones and cortisol levels.  I'll post updates on each of these items as I get results.


I followed your exact same path, B_Daniel!

There was excitement at NSF for a while about T/P  (combo of progesterone and testosterone). So I became a guinea pig:
http://www.google.com/#hl=en&sclient=psy-ab&q=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&oq=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&gs_l=hp.3...3114.42163.0.42906.83.66.9.8.8.0.309.10527.0j52j9j1.62.0.les%3B..0.0...1c.1.GXbdK2yzm4U&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.&fp=acede1ef7df1b691&biw=1067&bih=441

My endo prescribed me norethindrone, but I QUIT AFTER 4 DAYS. Got pretty sick.

You might have a totally different reaction: I wish you the best!!!
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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MONEY BOMB!
« Reply #244 on: October 01, 2012, 02:35:58 PM »
The last donation of was a sign of by someone who contacted me and said he was willing to cover an equal amount of all the donations that come in for the month of October!

So everybody, make your work for you!

If you make a donation between now and the 31st of October our "SPONSOR" will donate an equal amount.

So your donation of $10 NOW will have the impact of $20, $100 will mean a total of $200 and so on.

So come on everybody,MAKE IT COUNT!!

And a great applause for our "SPONSOR"!







« Last Edit: October 02, 2012, 12:36:45 AM by demografx »
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!

Daveman

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Re: This may seem like a familiar place.
« Reply #245 on: October 01, 2012, 03:25:45 PM »
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.
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 familiar place.
« Reply #246 on: October 01, 2012, 09:20:09 PM »
One excitement after another.

When it rains it pours.
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

Ccconfucius

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Re: This may seem like a familiar place.
« Reply #247 on: October 01, 2012, 10:17:53 PM »
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.


Nice work.

demografx

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Re: This may seem like a familiar place.
« Reply #248 on: October 02, 2012, 10:46:21 AM »

As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.


Not true for me.

Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!


Finally to say, wonderful life after 7 years. 


Congratulations!
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 familiar place.
« Reply #249 on: October 02, 2012, 11:50:56 AM »

As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.


Not true for me.

Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!


Finally to say, wonderful life after 7 years. 


Congratulations!

I think what happens is that we THINK (really want) the medicines to work, so they seem to. And it depends so much on "chance". POIS has it's ups and downs, weather, amount of sleep, nutritional condition, so many factors, and so many of them we don't related directly to POIS, maybe because we don't take detailed notice of all the factors.

So one day, we have all the stars lined up, and by chance, also try some remedy. WOW, it seems to work! How many times have I said that! Then the bottoms falls out when the weather changes or some other factor that I haven't been keeping track of, changes.

Tests of remedies is complex! We can't realistically do it without a step by step protocol. Note all initial conditions, limit items being tested, not all changes  outside of the testing parameters, and then perhaps even do blind tests with cross-checks.

Sounds like a pain in the butt, and so that's why we don't dedicate a little more time to it. But we're just fooling ourselves if we don't.

The idea is not to be critical or reprimanding, but to bring attention to what it really take to do a test that has any use.

Your testosterone worked because it was administered and controlled by a doctor. You didn't just try it for the heck of it! Or if at least you did, it was still under the control of a doctor who could say, "today it didn't work because of such and such but lets change the dose a bit and keep it up for a bit..." or whatever. At least more control, and entered with a plan and evaluated with understanding.

"A success is not a success without the data and a failure is not a failure with the data!"

This would have to be our motto!



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!

mellivora

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Re: This may seem like a familiar place.
« Reply #250 on: October 02, 2012, 05:08:49 PM »
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.

WOW! Grateful that Juan I.Martínez-Salamanca is interested in POIS. Thanks Daveman for the heads up. I THINK ITS ESSENTIAL THAT WE ALL COMPLETE THIS QUESTIONNAIRE. We can't bang on about wanting research if we don't partake in research opportunities when they are offered! A HAND HAS BEEN EXTENDED IN OUR DIRECTION, PLEASE DON'T MISS THIS OPPORTUNITY FOR YOURSELF AND FOR ALL OF US.

mellivora

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Re: This may seem like a familiar place.
« Reply #251 on: October 02, 2012, 05:42:32 PM »
Thanks to all for recent donations! The recent rise in funds is truly heartening and reflects the tireless hard work  and the various amazing outreach efforts there have been here lately 

Also...since I don't want to distract from my last post which quoted Daveman's message about Dr. Juan I.Martínez-Salamanca in Madrid, there now follows some repetition: please complete that questionnaire! ;)

Hoping

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Re: This may seem like a familiar place.
« Reply #252 on: October 02, 2012, 09:21:36 PM »
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.
Great news! I just filled it out.
Experienced POIS since 2002.
My symptoms include: brain fog, depression, physical and mental fatigue, memory problems, social anxiety, concentration problems, myalgia, inflammation.

kurtosis

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Re: This may seem like a familiar place.
« Reply #253 on: October 03, 2012, 03:27:15 AM »
Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.

- Would it be possible to email or message everyone on the forum with a link to the survey?
- And would it be possible for these researchers to share their survey results with other researchers and the forum so we can get some definitive answers on what symptoms everyone is suffering from?  (at the minimum).

I can't see why anybody on the forum wouldn't so they should get a few hundred survey entries.

0002ppdnuos

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Re: This may seem like a familiar place.
« Reply #254 on: October 03, 2012, 04:50:12 AM »
I just filled in the questionnaire.
It started ever since my first orgasm. It lasts exactly for 7 days. Symptoms mainly in the brain: extreme mental  fatigue, difficulty concentrating, inability to comprehend/retain what is read,shortened attention span, loss of speech fluency, cloudy mindedness, mild headache, and anxiousness