Author Topic: Free Flow Discussion about POIS  (Read 583562 times)

poisioq

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Re: This may seem like a familiar place.
« Reply #255 on: October 03, 2012, 06:08:13 AM »
done

Observer

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Re: This may seem like a familiar place.
« Reply #256 on: October 03, 2012, 07:01:37 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.


I´ve also filled the survey. I think we are at critical stage. We should move on decisively this month. If some of you had doubts about how much or when give money to our NORD fund, this is your moment to solve them. This wonderful sponsor has given us a very special opportunity to reach our objective before the end of this year. I think everyone should make some effort and give something - It does not matter the amount, but the willingness- to have a GOOD research done. And if you were having doubts to tell the POIS problem to anyone, you should do it now, so this people can also help us with a small donation... that will be multiplied by 2!!

Daveman

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Re: This may seem like a familiar place.
« Reply #257 on: October 03, 2012, 09:09:04 AM »
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.

Thanks!!

Please everybody, take 3 minutes to fill out the form. This survey is on the Google system, user friendly, maybe easier to fill out than the one I programmed for us.

Don't know if you will think that it is too basic, but have patience. The Doctor knows what he needs, and there will be follow-up once we have a good base.
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 #258 on: October 03, 2012, 11:43:05 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.

Yes we will be Emailing the message to everyone. Up till now, we have been sending individual "messages", but right now there's a LOT going on and we should be able to compose more of an all round informative newsletter of important events.

In case that some have not been getting our mailouts, (they go out between once every week or two weeks), check your SPAM folders, maybe even take us off the "black-list". Otherwise we may have an old EMail address. I have started a WEB based program to allow editing / adding and removing your data for subscription, but alas, time is always the problem.

Meantime anyone desiring to be on (recommended) or off (NOT) the list can PM me for now.

I am sure that we will have access to numbers derived from the survey and I am POSITIVE that the results will contribute to the creation of a well designed research program. We are the BIGGEST access point to POIS information and it behoves us to make it available to those who can really help us. If we do NOTHING else, this we must do!

This information will lead to widening spirals to collect ever more specific and pertinent POIS data.

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 #259 on: October 03, 2012, 04:57:47 PM »
We've received two donations today!! Way to GO! One for $100 and another for $50!

So, good start! Thanks to the donors!

« Last Edit: October 03, 2012, 07:11:34 PM by Daveman »
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 #260 on: October 04, 2012, 01:33:25 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!


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.


Not only that, Dave, but it was a 10-year process for me since the 1st POIS paper came out. I contacted whoever I thought would have a clue, worldwide, in the US, and in Europe. Mostly well known sexologists, most notably Jane Thomas at Johns Hopkins University.

In the 7th year, I finally decided to "pull out all guns" and "shoot" this evil, hideous creature-thing called POIS. I contacted my Harvard biotech pioneer friend and he suggested a major teaching university and world class laboratory. I was reluctant, but desperate enough to follow his advice and the forum's advice - which was to get a full range of hormonal blood tests, which led to a brain MRI -- and many more formalized blood tests. My endocrinologist doctor is a fully tenured top University Professor in Endocrinology and is in a RESEARCH environment because of the university.

My daily (365X) testosterone patches are the result of THOROUGH testing, consultation, and re-testing, with a sympathetic, top ranked,senior endocrinologist-physician and a world class medical laboratory. It did not happen overnight by ANY stretch of the imagination.

No snap of the finger here.

Careful, methodical, validated, adjusted, constantly monitored, and it will continue that way.

And even with all that - in our primitive pre-NORD Grant period - I was lucky.

« Last Edit: October 04, 2012, 07:00:12 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

Daveman

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Re: This may seem like a familiar place.
« Reply #261 on: October 04, 2012, 09:55:30 AM »
Hey everybody, we've received another donation for $50!!

THAT'S THE WAY, KEEP IT COMING.

THANK YOU!

BTW there were 2 for $50 today!

« Last Edit: October 05, 2012, 11:36:20 AM by Daveman »
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 #262 on: October 04, 2012, 11:48:36 AM »
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!

poisioq

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Re: This may seem like a familiar place.
« Reply #263 on: October 04, 2012, 06:02:58 PM »
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)

Daveman

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Re: This may seem like a familiar place.
« Reply #264 on: October 05, 2012, 06:44:22 AM »
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thanks for donating. ALL donors whould be worshipped ;D

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!

Ccconfucius

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Re: This may seem like a familiar place.
« Reply #265 on: October 05, 2012, 10:19:15 AM »
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thanks for donating. ALL donors whould be worshipped ;D


hahaha

demografx

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Re: This may seem like a familiar place.
« Reply #266 on: October 05, 2012, 10:37:46 AM »
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thank you, boissioq!!
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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  • All of us working together to defeat POIS!
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 #268 on: October 06, 2012, 06:35:25 AM »
Well the Indiegogo "Campaign" has 43 hours to go.

Many thanks to the two donors who have raised a total of $85.
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 #269 on: October 06, 2012, 12:37:29 PM »
Look for our latest mailout! If you haven't received it check you should check your SPAM folder

Time to blast POIS! Let's Go!

« Last Edit: October 07, 2012, 06:20:21 AM by Daveman »
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!