Author Topic: Re: Applications for participation in Dr. K's POIS study  (Read 63422 times)

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #40 on: September 23, 2014, 10:16:00 AM »
All set. Mailed, ready and excited. :)
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #41 on: September 23, 2014, 10:48:11 AM »
All set. Mailed, ready and excited. :)





...and to everyone else

preparing for our first

"Moon Launch"! :)



« Last Edit: September 23, 2014, 10:51:39 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

poiseidon

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Re%3a+Applications+for+participation+in+Dr.+K's+POIS++study
« Reply #42 on: September 23, 2014, 11:52:24 AM »
god+bless+you
After spending loads on supplements I found out that the only thing that works is abstinence. Full stop. And it's free.
Meditation if done correctly is great too.
Also avoiding computers produce faster recoveries and fewer temptations.

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #43 on: September 23, 2014, 01:58:24 PM »
:) Keep going guys. We will do this, even if this hypothesis doesn't pan out.

If not for us, for the next generation of POIS sufferers.

Nothing will stop us now. I am not ashamed anymore and tell everyone I know about this (besides wk & school). They will have to deal with that themselves if they don't like it; because it is real, it is here, "it is certainly POIS," but we will treat it then eradicate it.

I don't want an 12yr olds to suffer like I did. I cannot let that happen. :)
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #44 on: September 23, 2014, 03:52:19 PM »
You have the noblest motives, Andy. Thank you for being a true forum friend! :)
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

daropac

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Re: Applications for participation in Dr. K's POIS study
« Reply #45 on: September 23, 2014, 09:11:14 PM »
Submitted my application - looking forward to hearing from the team at Rutgers

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #46 on: September 23, 2014, 09:14:43 PM »
Submitted my application - looking forward to hearing from the team at Rutgers

Awesome!

How may more ppl have applied thus far? Is that 4 of us- does anyone know?
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #47 on: September 23, 2014, 09:29:49 PM »

Submitted my application - looking forward to hearing from the team at Rutgers


Awesome!

How may more ppl have applied thus far? Is that 4 of us- does anyone know?


DOUBLE AWESOME! :)

Stef thinks there might be 7 (verbally committed, not yet sent in).


« Last Edit: September 23, 2014, 09:34:17 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

Myers6609

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Re: Applications for participation in Dr. K's POIS study
« Reply #48 on: September 23, 2014, 09:43:09 PM »
Did I read that 12 are needed?

I'm in the States, so for logistical reasons I feel obligated to apply, although I have a busy year ahead of me.

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #49 on: September 23, 2014, 10:33:43 PM »
I'll ask Dr K.
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

G-man

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Re: Applications for participation in Dr. K's POIS study
« Reply #50 on: September 23, 2014, 10:56:51 PM »
Submitted my application - looking forward to hearing from the team at Rutgers

Awesome!

How may more ppl have applied thus far? Is that 4 of us- does anyone know?

I sent in my application today, should be there Thursday.
31 years old. POIS since puberty. Cognitive and physical symptoms.

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #51 on: September 23, 2014, 11:12:23 PM »
Submitted my application - looking forward to hearing from the team at Rutgers

Awesome!

How may more ppl have applied thus far? Is that 4 of us- does anyone know?

I sent in my application today, should be there Thursday.

FANTASTIC!!!  :)
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: Applications for participation in Dr. K's POIS study
« Reply #52 on: September 23, 2014, 11:18:57 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

Stef

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Re: Applications for participation in Dr. K's POIS study
« Reply #53 on: September 24, 2014, 12:18:41 AM »
"Did I read that 12 are needed?

I'm in the States, so for logistical reasons I feel obligated to apply, although I have a busy year ahead of me."

Hi, Myers6609 and Everyone Else!

12 men with POIS will be selected for the study.

But please don't feel "obligated" to apply, just because you live in the US. Only apply if you really want to participate. It will involve a commitment of time, energy, and personal funds, especially if you have travel and board expenses.

So far, there has been no shortage of applicants, and there are probably several other applicants who we're not aware of.

On the one hand, the more who apply, the better, as that will give Dr. K and his team a broader pool of applicants to choose from. But none of you needs to feel duty-bound!

Not for nothing, there is something wonderful to be said for participating in pioneering research, led by a scientist of Dr. Komisaruk's caliber. And he is such a decent person -- he'll put each participant at ease.

There's no need for anyone to feel pressured about participation -- not for those living in the US or for those overseas.

But -- Meyers6609 --  I DEFINITELY do encourage you to apply!  :-)

 

Stef
« Last Edit: September 24, 2014, 03:02:04 PM by Stef »

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #54 on: September 24, 2014, 01:26:33 AM »

Filled out! I'm ready. #hyperPOISmode


LOL, Andy!



« Last Edit: September 26, 2014, 03:39:08 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

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #55 on: September 28, 2014, 07:13:35 PM »
I was researching vagal nerve simulators and realized something that hit me like a ton of bricks!

I have taken a plethora of psych drugs to help with the symptoms of POIS (30 or so) and the only ones that have ever helped fall in the anti-seizure category besides just being psych drugs. Depakote for 10yrs which is anti-seizure and mood stabilizer and now Oxcarbazipine which is similiar in some ways. I needed 2000mg of depakote toward the end and am going up on the Ox right now (1200mg- 1800mg). I find I tolerate these drugs very easily whereas most other psych drugs make me worse; and would probably benefit from the vagal nerve stim immensely. You guys may want to consider these drugs, not becasue your crazy but becasue they may stabilize you for the time being. They wk different than other psych drugs and help physical pain and symptoms the most I have ever experienced. More than exercise or any supplement I have taken. They also help make your OCD and mood more stable. Talk to docs first, of course.

A neurologist once diagnosed me with myoclonis, which is a peripheral nervous system seizure- in a sense. Of recent I have not had much, but palpitations are fairly constant, except after abstaining for 1wk or so. This symptom is distressing despite the docs I see saying I am young and have a healthy heart and it will eventually pass.     

I think these guys got something right with this study...

Anyone know when it will start?
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #56 on: September 28, 2014, 08:13:44 PM »
It started! The forms we posted is an indication, as Daveman writes , that "...they haven't been sitting on their hands." There's a lot of prep work we don't see, but it's happening !!! :)  :)  :)
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

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #57 on: September 28, 2014, 08:19:12 PM »
It started! The forms we posted is an indication, as Daveman writes , that "...they haven't been sitting on their hands." There's a lot of prep work we don't see, but it's happening !!! :)  :)  :)

:) The more I think about their hypothesis the more it makes sense.. I hope this is it :)
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #58 on: September 28, 2014, 08:42:51 PM »
And NORD's prestigious MAC came to the same conclusion as you!

Verrrry encouraging. :)
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

mellivora

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Re: Applications for participation in Dr. K's POIS study
« Reply #59 on: October 01, 2014, 10:58:45 AM »


Just some very brief (but important) instructions re: paperwork for applying for Dr. K's study --

1) Print out the following questionnaires and fill out:
        #7A ("POIS Symptoms");
        #7B ("Your POIS History");
        #7C (2 pages, questions 1- 21 -- ***2 pages!);
        #7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)


2) Re: #7D -- the "SCL-90" questionnaire -- only pages 2,3 & 4 are required. Please ignore the first (title) page -- it's a scoring sheet that won't be used.  Dr. K. is only interested in your responses re: pages 2,3 and 4 (90 questions);

3) Print out the two pages related to the Informed Consent -- Attachment #4 (demo posted these two pages out of order -- the first page is "Informed Consent" and the second page starts with, "Research Participants Initials____")

4) Read, initial and fill out info for second page of the Informed Consent.

So -- the application consists of a minimum of 9 pages -- plus any comments written onto separate pages that you might wish to include.



Thanks Stef, your summary of the list of required pages definitely helps!!