Author Topic: A meetup or a support group  (Read 8436 times)

aalkaff

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A meetup or a support group
« on: January 02, 2012, 07:19:34 AM »
I'm sure many of you prefer to remain anonymous. I do, too, but perhaps to a lesser extent. I was wondering how I can go about meeting other POIS sufferers in my country for support, if they so choose. I've put where I'm from under Location in my profile but I couldn't find a way to search members on that field.

What do you guys think?

I'm sorry if you guys already talked about this. I already searched this forum for "support group" and "meet".

Daveman

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Re: A meetup or a support group
« Reply #1 on: January 02, 2012, 09:11:15 AM »
I have a chat bot software I hope to implement on this forum. It should give a facility similar to what Facebook has for chat!

It may not be a personal meetup but should be at least a step closer.

In Chile there is one member that I know of, and we have communicated through Facebook. He found a local doctor that does desensitizations, so valuable "local information" can be shared among individuals.

« Last Edit: January 02, 2012, 09:32:14 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!

Starsky

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Re: A meetup or a support group
« Reply #2 on: January 02, 2012, 09:23:01 AM »
Daveman, are you really intrested in desensitization?

Daveman

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Re: A meetup or a support group
« Reply #3 on: January 02, 2012, 09:36:39 AM »
I haven't taken this member up on the connection with the desens yet.

I'm still waiting for more affirmative results of desens. I am not really sure that it is a "cure" type solution, and while I am doing fantastic with niacin, I'm sticking with that until something a little more affirmative comes up.

I was surprised to find that it is available here, and following the results anxiously. It is good to have someone else locally with which to communicate.

The doctor here is following Dr. Waldinger's format very strictly, and if I have to be honest, I think our regime is advancing better. This doctor won't deviate from Dr. W.'s scheme.



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!

Starsky

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Re: A meetup or a support group
« Reply #4 on: January 02, 2012, 10:55:38 AM »
How many does he have patients for desens? Why do you think, he is advancing better?

Daveman

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Re: A meetup or a support group
« Reply #5 on: January 08, 2012, 12:27:46 PM »
How many does he have patients for desens? Why do you think, he is advancing better?

Maybe I should reword my previous post.

This doctor here, a woman is a immunologist, with a lot of experience, but had never heard of POIS. Her patient showed her the Dr. W. papers, and thought it would be worth a try. So he is the only one right now following this treatment.

But this doctor, not being familiar with POIS or this kind of desensitization, is strictly following Dr. W's recommendations in the papers. Since then Dr. W. himself,  has accelerate the procedure, and we too have found that the procedure can be safely accerlerated. But the doctor here won't change the procedure, so it doesn't interest me much.

So I think our regime (the forum's) is advancing better.
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!

vonstermommy

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Re: A meetup or a support group
« Reply #6 on: July 30, 2012, 08:36:03 PM »
Californians email me!
Im the wife of a man suffering from POIS. 300 Niacin. Feel free to give your wife my email address!

Andy451

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Re: A meetup or a support group
« Reply #7 on: November 06, 2012, 08:51:30 PM »
I think its a great idea for some of us to meet up and talk about our POIS in a organized fashion. I also realize that many guys want to remain anonymous, yet if we have a very organized platform w/ a licensed psychological professional  who can direct conversation in a productive manner (ex. AA). I think the awkwardness of not knowing or maybe only surnames/first names would be much alleviated by a sex therapist whom I happen to know. She has experience w/ two other POIS sufferers besides myself in the last 10 years. I am from Northern New Jersey and very open about my information and story, even if you do not want to share, that is fine, I am not adverse to talking strictly about solutions to other problems like what works for who, research grants, exposure to the public, learning about others and raising money. Even so, there is a huge psychological component to POIS which effects everyone differently. We could also speed up the conversation tremendously with face to face contact and a human level of trust. 

From Northern New Jersey, message or email me if you want to set up a group in the region.     
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

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

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Ccconfucius

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Re: A meetup or a support group
« Reply #8 on: November 07, 2012, 05:31:43 PM »
we can do like a google group thing on google plus if every one is to spread out.
or something similar to gotomeeting.

Nightingale

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Re: A meetup or a support group
« Reply #9 on: November 07, 2012, 05:47:37 PM »
I would be happy to have a Skype conference.  Can't you set up a chat room with Skype, where it stays up indefinitely?
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Daveman

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Re: A meetup or a support group
« Reply #10 on: November 08, 2012, 06:37:41 AM »
I would be happy to have a Skype conference.  Can't you set up a chat room with Skype, where it stays up indefinitely?

Skype requires a paid version for conference as far as I am aware. I suppose it's not much though... I'm not sure about the "being open continuously", but even so, one could sign on and join in I think at any time. If there isn't anyone else on, it would be similar to the present Chat, where you would just talk to yourself.

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: A meetup or a support group
« Reply #11 on: November 08, 2012, 11:25:18 AM »
we should have set time to meet and may be meet couple of times a year or once a month or something.

Andy451

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Re: A meetup or a support group
« Reply #12 on: November 08, 2012, 03:02:41 PM »
I agree, setting up a time monthly, bi-weekly, or weekly would be a very productive and efficient way of conversing at a faster pace. This forum is a great medium for conversing too. Do you guys already include cam chatting? If not a secondary messenger platform would be helpful once we already have met online. I don't know enough about group conversation on Skype, though that could be an option.

If we are going to set up times to speak we should probably make two on the day of conversation dependent on time zones and the amount of people contributing from each group respectively . 

37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

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

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Defsync

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Re: A meetup or a support group
« Reply #13 on: November 21, 2012, 12:28:34 AM »
you guys find a spot, ill be there. we shoullllld have a national convention type thing, then promote it to local newspapers. maybe in an area (like L.A.) where their are highly notable research universities

i live in ohio/michigan border area.

southwest.com can get you from anywhere in the country (cept alaska hawaii) to anywhere else in the country for under 200$

as long as you book week or two in advance

Hoping

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Re: A meetup or a support group
« Reply #14 on: November 25, 2012, 12:01:44 PM »
I think its a great idea for some of us to meet up and talk about our POIS in a organized fashion. I also realize that many guys want to remain anonymous, yet if we have a very organized platform w/ a licensed psychological professional  who can direct conversation in a productive manner (ex. AA). I think the awkwardness of not knowing or maybe only surnames/first names would be much alleviated by a sex therapist whom I happen to know. She has experience w/ two other POIS sufferers besides myself in the last 10 years. I am from Northern New Jersey and very open about my information and story, even if you do not want to share, that is fine, I am not adverse to talking strictly about solutions to other problems like what works for who, research grants, exposure to the public, learning about others and raising money. Even so, there is a huge psychological component to POIS which effects everyone differently. We could also speed up the conversation tremendously with face to face contact and a human level of trust. 

From Northern New Jersey, message or email me if you want to set up a group in the region.     

I love this idea! I'm in Boston... is there anyone else out there??
Experienced POIS since 2002.
My symptoms include: brain fog, depression, physical and mental fatigue, memory problems, social anxiety, concentration problems, myalgia, inflammation.

bjameshill

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Re: A meetup or a support group
« Reply #15 on: March 19, 2013, 11:13:48 AM »
Austin, Texas.  And willing to travel, Skype or Google Hangout.  I think it would be good therapy for me.  I have always been so secretive of my issues, even hiding them from my wife, that a face to face or online meeting could really help.
22 years POIS-like symptoms. It's been a long road...