[peteyboy]

Hey all,
   Does anyone know of any fantastic endocrinologists or allergists in the LA/SoCal area? Feel free to PM me with info...
TIA
P

[demografx]

Rare Disease Day
February 28, 2011
http://rarediseaseday.us/

See our good friend and advisor, Stefanie, on video!!

[Vandemolen3]

This is crazy guys. I just realized, when Im out of POIS i steer away from choclate because for some reason it gives me a huge urge to mess around. But while im in POIS I lay around and eat choclate sometimes. I love choclate and its like what the heck, Im already sick now so I can eat all I want. And Ive noticed that choclate makes me feel better while in POIS. I just looked it up and choclate increases Testosterone quite a bit. Interesting!

I also eat chocolate after an O. I think that's because I feel bad and chocolate gives you a good feeling. And chocolate gives energy. If you feeling tired because of POIS... But in the last months I stopped eating chocolate because I gained some weight. If you want to have less joint pains because of POIS you have to lose weight.

[daveman]

Did she read the latest paper of dr. Waldinger? There is the protocol of the treatment.

I don't believe Waldinger was any more specific in his study other than to just say he did pinprick tests on his patients

He gives dilution ratios and mentions subcutaneous (SC) administration. A skinprick could be called SC, but mentioned thusly it implies more an injection than a "skinprick" as such.

I thought I saw a quantity mentioned as well. I'll come back and edit this if it reads different than I remember.

Edit: 0.05 ml at a dilution of 1:40000 injected intracutaneously at the volar side of the left forearm. That's 50 cubic milimeters, more than just a skinprick.

Please everybody, read the reports, know them inside and out. It's difficult to compare or make comments and decisions if you don't really understand what Dr. Waldinger is saying.

Good luck Nightingale. It's a real opportunity to have a doctor who's willing to "humor you" []

[artist]

This is crazy guys. I just realized, when Im out of POIS i steer away from choclate because for some reason it gives me a huge urge to mess around. But while im in POIS I lay around and eat choclate sometimes. I love choclate and its like what the heck, Im already sick now so I can eat all I want. And Ive noticed that choclate makes me feel better while in POIS. I just looked it up and choclate increases Testosterone quite a bit. Interesting!

I also eat chocolate after an O. I think that's because I feel bad and chocolate gives you a good feeling. And chocolate gives energy. If you feeling tired because of POIS... But in the last months I stopped eating chocolate because I gained some weight. If you want to have less joint pains because of POIS you have to lose weight.

I didn't mention it as a symptom of myself because it seemed not very seriously but I have a very strong longing for coffee with POIS.
Perhaps because of the brainfog and fatigue.
By the way : it doesn't work, all that coffee!!!

[daveman]

Rare Disease Day
February 28, 2011
http://rarediseaseday.us/

See our good friend and advisor, Stefanie, on video!!

You're a special person Stefanie, thanks for caring for all who suffer rare diseases.
One day perhaps, the world will be made up of people who do things because they care.

[Green]

I'm doing pretty well right now with a solution of HCG and e2 control. In all honesty I'm feeling well as I can expect given I have other health problems besides POIS, this solution is working well in POIS and out of, I'm going to see my GP about the Dr. Waldinger proposition, as said it's a good idea to scrutinse and understand the two papers before you present then as chances are, unless you're working with someone who has dealt with POIS, it's going to take a little bit of persuasion and determination before you're on the right tracks.

[Green]

I got the pinprick done around 35 minutes after I had produced the semen, and by that time the sperm had gone from its fresh state (white-milky color) to mostly clear and yellow-tinged.  I felt that despite the negative result, I'd like to try a fresher sample for the pinprick.  The allergist was looking at me funny, but she said that she'd humor me.  I'll have to wait til Monday to do it again


OH P.S.:  I"ll be starting the testosterone cream after I do the sperm pinprick again, dont want more variables

I couldn't imagine this being the best time to test for a semen allergy, you're body is already in a state of POIS, perhaps the body is already using some defenses to eradicate POIS so a little skin ***** might at that time might not give the trigger response of an allergy, but using the analogy of having a pollen test done whilst the body is already exposed to pollen should still give a positive reaction if the host is allergic?

I'm taking injection for test/HCG and so far it's been good no abscess or anything, taking transdermal testosterone increases DHT (there's lots of reading materials on that subject) which boils down to loss of hair, amongst other side effects in comparison to injections. Injections of testosterone and HCG whilst in POIS, have been considerably painful sometimes but out of POIS they've ALWAYS been painless and the site is not sore for days just hours, I've used that as a marker also when I'm out of POIS.

[Nightingale]

I couldn't imagine this being the best time to test for a semen allergy, you're body is already in a state of POIS, perhaps the body is already using some defenses to eradicate POIS so a little skin ***** might at that time might not give the trigger response of an allergy, but using the analogy of having a pollen test done whilst the body is already exposed to pollen should still give a positive reaction if the host is allergic?

I'm taking injection for test/HCG and so far it's been good no abscess or anything, taking transdermal testosterone increases DHT (there's lots of reading materials on that subject) which boils down to loss of hair, amongst other side effects in comparison to injections. Injections of testosterone and HCG whilst in POIS, have been considerably painful sometimes but out of POIS they've ALWAYS been painless and the site is not sore for days just hours, I've used that as a marker also when I'm out of POIS.

I have no idea what you mean, about this not being the right time to test.  Are you trying to put a bad light on my results because they aren't what you'd like them to be?  Seriously, it's what it seems like, or I'm very confused.

Second person already who is telling me that I'm in the wrong state to be checking for allergic reactions, and with what evidence?  Some personal hypothesis?

[Nightingale]

He gives dilution ratios and mentions subcutaneous (SC) administration. A skinprick could be called SC, but mentioned thusly it implies more an injection than a "skinprick" as such.

I thought I saw a quantity mentioned as well. I'll come back and edit this if it reads different than I remember.

Edit: 0.05 ml at a dilution of 1:40000 injected intracutaneously at the volar side of the left forearm. That's 50 cubic milimeters, more than just a skinprick.

Please everybody, read the reports, know them inside and out. It's difficult to compare or make comments and decisions if you don't really understand what Dr. Waldinger is saying.

Good luck Nightingale. It's a real opportunity to have a doctor who's willing to "humor you" []

Thanks daveman :-)

I've only read the abstract, Dr Waldinger's post, and the news reports on POIS.  Where do I get the full version with the dosing and such?  Can you send me a copy?

[Green]

I couldn't imagine this being the best time to test for a semen allergy, you're body is already in a state of POIS, perhaps the body is already using some defenses to eradicate POIS so a little skin ***** might at that time might not give the trigger response of an allergy, but using the analogy of having a pollen test done whilst the body is already exposed to pollen should still give a positive reaction if the host is allergic?

I'm taking injection for test/HCG and so far it's been good no abscess or anything, taking transdermal testosterone increases DHT (there's lots of reading materials on that subject) which boils down to loss of hair, amongst other side effects in comparison to injections. Injections of testosterone and HCG whilst in POIS, have been considerably painful sometimes but out of POIS they've ALWAYS been painless and the site is not sore for days just hours, I've used that as a marker also when I'm out of POIS.

I have no idea what you mean, about this not being the right time to test.  Are you trying to put a bad light on my results because they aren't what you'd like them to be?  Seriously, it's what it seems like, or I'm very confused.

Second person already who is telling me that I'm in the wrong state to be checking for allergic reactions, and with what evidence?  Some personal hypothesis?

Well to be fair I think you are lucky enough to find someone to get you to some semen allergy tests this quickly, it would be a good idea to follow the same protocol Dr. Waldinger did for his patients as a comparison baseline. In his report it states "the males were requested to masturbate at home and to collect the semen in a container to be stored immediately into a deep freezer." The assumption there would be the skinprick test was not done immediately after, unlike your test therefore causing a possible variance and possibly coming out negative.

Your results are what they are, read what I wrote then formulate an opinion about what I'm saying, no-one is telling you anything, merely suggestions, it's up to you what you want to act upon, if a forum isn't a place for suggestions/opinions/hypothesis then I apologize. POIS isn't an exact science, jeez...

[demografx]

NIGHTINGALE, to get the 2 POIS papers:

* Most recent POIS Research Studies, 2011 *

If you will send Prof. dr. Waldinger an e-mail, stating that you have read his message on the Forum, at http://www.thenakedscientists.com/forum/index.php?topic=6576.msg340138#msg340138 and that you are willing to fill in a questionnaire, he will send you the copies of both 2011 research articles by return through email. At a later date, he will send you the questionnaire which, after having filled in, you should send him back by e-mail.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html

[demografx]

Daveman, thanks for your kind remark to Stefanie at NORD. I sent your post in case she doesn't see it here.

[Tim in San Francisco]

Hi All,

I introduced myself to the community back in July and I wanted to share some personal progress with the group. About a month ago, I began taking Wellbutrin and have seen a positive change in my mood generally and a very significant improvement in my mood post-orgasm.

Recently I decided to get a GP for general health purposes and I was describing to her a range of things going on, including POIS but also some other conditions. Seemingly unrelated to POIS I have been waking up in the night shaking and found that any amount of alcohol was likely to bring this condition on several hours after consumption. She said that both orgasm and alcohol deplete dopamine in the brain, and that in addition to my POIS symptoms that shaking could be a result of that (Parkinson's Disease is related to dopamine production declining). So in the end, she said that Wellbutrin was a good candidate for me as its the only anti-depressant that acts by increasing dopamine. Doing an online search I also found a post on this forum that Dr. Moser had recommended Wellbutrin to one POIS sufferer and some others had seen success, so I felt my new GPs hunch / hypothesis was well founded.

In the first 1 - 2 weeks I was disappointed with the results and I did not see much of a change. However the last week, I have seen a significant change. I'm told that it can take 6 - 8 weeks for the medication to have its complete effect. I'll look over time to make sure it isn't something else, but I will say this. Over the years there has been variation in the intensity of symptoms but I have never been as symptom free (during a period of having some sexual activity) as in the past week. I read other posts on the forum relating to Wellbutrin and noticed a mention of side effects. I did initially experience a little agitation that caused some anxiety at first, but after a few days I got used to having a higher energy level and that side effect went away. I've also had an increased libido on the drug. Thankfully I've been able to continue with the medication and seeing some good results. I'll also say I'm not 100% cured and I continue to use maintenance strategies including regular exercise and meditation, but it appears that the Wellbutrin has had a powerful effect beyond what those strategies have done for me in the past.

Cheers,

Tim

[demografx]

Everyone, from Stefanie/NORD about a POIS video
Any takers?



From:                Stefanie <stefanie@rarediseases.org>
Date:                 February 6, 2011 10:25:20 AM PST
To:                    demografx
Subject:            Re: posted at POIS

Demo,

I hope it gives just one of you guys (or wives, partners, friends) the courage to do a brief video--to show the human toll of POIS.  I guarantee that there are so many other men (and women) wanting--and needing-- to learn about it--and to find out that they're not alone.

We aren't seeking "perfect" videos (as you can easily see from mine!). We want REAL people, speaking from the heart, emotions welcomed.  The website explains the video project -- http://rarediseaseday.us/take-action-now/video-project/.


Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968

Phone: 203.744.0100
Toll Free: 1-800-999-6673
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org


Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
 
--------------------------------------------------------------------------------------------


On Sun, Feb 6, 2011 at 12:20 AM, demografx wrote:


    
Rare Disease Day
February 28, 2011
http://rarediseaseday.us/

See our good friend and advisor, Stefanie, on video!

[demografx]

Tim in San Francisco, thank you very much for sharing your experience with Wellbutrin. I personally had a terrible reaction to Wellbutrin.

But your beneficial experience (and others, I'm sure) simply proves that we're all different!

New research since you were here last:

* Most recent POIS Research Studies, 2011 *

If you will send Prof. dr. Waldinger an e-mail, stating that you have read his message on the Forum, at http://www.thenakedscientists.com/forum/index.php?topic=6576.msg340138#msg340138 and that you are willing to fill in a questionnaire, he will send you the copies of both 2011 research articles by return through email. At a later date, he will send you the questionnaire which, after having filled in, you should send him back by e-mail.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


Thanks again, Tim!

[Nightingale]

Tim in San Fran:

It heartens me to hear someone suffering from depression having tangible improvement, all the best to you and to your continued recovery!

[demografx]

Nightingale, mine has been relieved substantially by a combination of ADD-type stimulants + low-dose antidepressants.

[Hazeywtf]

Quote from: Zoop on 19/01/2011 19:59:28
Quote from: hazey on 19/01/2011 10:46:04

Hi Everyone

mod edit - deleted as spam

Haha let me laugh what's this crappy website you repeat so many times in your post, made to send your useless expensive oils ? I think we suffer enough and don't need that some people try to draw our money.
Zoop, thank you for exposing this!

Why Did my post get deleted as spam?? and More importantly why was I banned! No where in my post was I trying to sell a product only sharing my experience to help others. If you check my post history you will see I am actually a genuine pois sufferer. I would appreciate if this gets lifted and perhaps the moderator contact me and explain, or is that what goes on here, someone actually has some useful information and then they get shutdown and members dont get to benefit from it.

[daveman]

Quote from: Zoop on 19/01/2011 19:59:28
Quote from: hazey on 19/01/2011 10:46:04

Hi Everyone

mod edit - deleted as spam

Haha let me laugh what's this crappy website you repeat so many times in your post, made to send your useless expensive oils ? I think we suffer enough and don't need that some people try to draw our money.
Zoop, thank you for exposing this!

Why Did my post get deleted as spam?? and More importantly why was I banned! No where in my post was I trying to sell a product only sharing my experience to help others. If you check my post history you will see I am actually a genuine pois sufferer. I would appreciate if this gets lifted and perhaps the moderator contact me and explain, or is that what goes on here, someone actually has some useful information and then they get shutdown and members dont get to benefit from it.

The information you posted is not useful (my opinion). There have been too many of us who have wasted time trying to cure POIS with diet and lifestyle alone. The only lifestyle solution is abstenance. If your cures worked for you, you do NOT have POIS.

Diet and lifestyle CAN help to reduce symptoms, sometimes, but the rigor required to reduce symptoms continuously and in higher percentages (50%) with this methodology is not practical and not conducive to a pleasant and stress free lifestyle.

Don't bother us and don't use your well devised words to misdirect the more innoscent of us here.

If the moderator were to ban you again, I would support him, I'm sure he did so within the guidelines of The Naked Scientists Forum.