[demografx]

Correspondence between Demo and the "POIS Spoof Writer" (see Green's link to his article directly below)

More good news;

http://www.thespoof.com/news/spoof.cfm?headline=s2i79446

Silly site mocking our suffering... Publicity non the less.

In a message dated 8/4/2010 9:21:39 A.M. Pacific Daylight Time, Anthony Rosania writes:

[Demo]:

Thanks for the email, I do appreciate it.

I must admit, once I read that you moderate a POIS website, I was afraid to read on.

Everything in the article was a spoof: To my knowledge there is no pending JAMA research. I literally was researching a theory I have about sexual dysfunction and brain chemistry for a paid piece I was writing and stumbled upon POIS.

I received a fair number of emails regarding the piece, including two emails from readers who asked if the disorder was real, because they suffered similarly.

What website do you moderate? I got a lot o f my research from thenakedscientists.com. If you provide me with your website, I would like to amend my story to include a quick "POIS is real, here is where to get more info..."

[Demo], thanks again, and thank you for understanding the spirit in which the piece was written:

Anthony Rosania


On Wed, Jul 28, 2010 at 1:14 PM, <Demo> wrote:


Dear Anthony,

I moderate the largest, international Forum of Postorgasmic Illness Syndrome sufferers (700,000+ page visits).

Your article was hilarious.

I'm just dying of curiosity, how you found out about our tiny, obscure malady???

Also: was JAMA a spoof, or do you know of any actual plans of theirs to publish on POIS?

On a more serious note, this year we were published in The British Journal of Medicine, and The Journal of Sexual Medicine. We also have a wikipedia entry, a website, a chatroom, and blah blah blah : - )

Many thanks, Anthony

[Demo]

note - I will reply with our website at Naked Scientists LOL. Demo

[CertainlyPOIS]

I received some information from Life Extension on Fibromyalgia/CFS and an interesting theory is that the cause is there is an elevated level of peroxynitrate .  Research by Martin Pall in 2005 seems to indicate this is caused by abnormal levels of nitric oxide Synthase (INOS)in the central nervous system causing inappropriate stimulation of pain receptors and increase in oxidents such as peroxynitrite radical and other reactive oxygen species.
Nitric Oxide is produced to begin the process of increasing blood flow into the Penis for erection.  PDE5 is a substance which inhibits this process.  Sidinfil which is the active ingredient in Viagara etc.  inhibits PDE5. 

Perhaps that is why some had temporary  relief from using these products is that less  Nitric Oxide was necessary and therefore less INOS
Nitric Oxide is also used to a lesser extent in the stimulation process for women during sex.
I tried a product recently which was supposed to increase oxygen at the cellular level.  The process using a form of L-arginine  to stimulate production of natural Nitric Oxide.  I stopped  because my muscles and spine became stiff and it was harder to move. Almost identical to what happens with POIS, particularly in that 1st 24 hour period.
The effects of this oxidative  damage include fatigue, lethargy, depression, siffness and pain. A lot of the damage occurs to the mitocondria which affects the ATP-ADP energy producing cycle
Unfortunately a diagnosis would probably require a spinal tap  during POIS.
Antioxidants could help some.  Things like blueberries are very high.  There is a product out of France which may help counteract this effect but has not proven in any tests.

Also in the article it notes how intravenous B12 has reduce some cfc patients symptoms. B12 scavenges for the oxidant that results from increase in nitric oxides.   I think somebody has noticed help from using high dose of b12.

Part of the problem for cfc patients are msg and aspartame pesticides and some other chemicals that stimulate NMDA receptors which inturn create the cycle of over production of nitric oxide and the oxidant produced from nitiric oxide.

All i can get from the article is to try of combination of high dose vitamin b12 and antioxidant rich die and see if it reduce pois symptoms and recovery period.

[CertainlyPOIS]

respond to spoof

now we are sure we at least visible to those who have the problem and are willing to spend some time searching the internet.

[strike333]

anyone get clicking noises in their head too?

[demografx]

P/T (Progesterone/Testosterone)

Would someone kindly refresh my memory. Which study/article started the P/T combo interest? Dexter's?

[demografx]

respond to spoof

now we are sure we at least visible to those who have the problem and are willing to spend some time searching the internet.

CC, I wrote Anthony back with our link so that he can publish it, and asked him to send us the link to his re-write (one more plus for us in the credibility AND publicity departments!)

I also showed him our "Welcome" letter, with all the links to studies, the video, Counterpoints' survey, etc.

[demografx]

anyone get clicking noises in their head too?

Several people at this forum with similar complaints:
http://ehealthforum.com/health/topic43563.html

[Vandemolen3]

CC, I wrote Anthony back with our link so that he can publish it, and asked him to send us the link to his re-write (one more plus for us in the credibility AND publicity departments!)

I also showed him our "Welcome" letter, with all the links to studies, the video, Counterpoints' survey, etc.

Let them stay away from this forum. Otherwise there will come some Spoof-visitors on this forum and make jokes about POIS. Some think they are funny.

[demografx]

Today I had a cystoscopy. And an ultrasound of the prostate. In the bladder, the prostate and the urethra there was nothing wrong. My urologist said that I have to do noting in three months. Maybe the time will heal my many UTI's (3 in one year).

Today or tommorow I will have a blood test for: Progesteron, Testosteron total and Prolactin. This is on my request. The urologist said that he doesn't exept that there is something too see.

Today I will ask my familydoctor for a blood test for things like vitamin D, iron, anemia, diabetes, etc.

P.S. Does anyone has a 'stabbing' feeling in the penis?

Vandemolen, thanks for reporting this to the group!

Best wishes.

[demografx]

CC, I wrote Anthony back with our link so that he can publish it, and asked him to send us the link to his re-write (one more plus for us in the credibility AND publicity departments!)

I also showed him our "Welcome" letter, with all the links to studies, the video, Counterpoints' survey, etc.

Let them stay away from this forum. Otherwise there will come some Spoof-visitors on this forum and make jokes about POIS. Some think they are funny.

Rest assured, Vandemolen, if that happens they will be banned immediately!

mod edit - Further, their offending posts will be deleted.

Let's hope that some serious sufferers come instead, people who really need us.

[Vandemolen3]

Today I had a cystoscopy. And an ultrasound of the prostate. In the bladder, the prostate and the urethra there was nothing wrong. My urologist said that I have to do noting in three months. Maybe the time will heal my many UTI's (3 in one year).

Today or tommorow I will have a blood test for: Progesteron, Testosteron total and Prolactin. This is on my request. The urologist said that he doesn't exept that there is something too see.

Today I will ask my familydoctor for a blood test for things like vitamin D, iron, anemia, diabetes, etc.

P.S. Does anyone has a 'stabbing' feeling in the penis?

Vandemolen, thanks for reporting this to the group!

Best wishes.

Thank you.

My urologist is in the dark about why I've got so many UTI's. I told him about POIS. He never heard about it. But he listened to me and gave me a go for a blood test for several hormones-level. I've to wait a week for the results. I can't wait.

[strike333]

Hey vandemolen, I have stabbing feeling on my penis(around the head of the penis).  I also decided to circumcise my penis to see if it would magically help heal my pois.  Can't wait to hear your hormone blood result.  Maybe I should get one tested too.

[demografx]

My urologist...never heard about [POIS]. But he listened to me and gave me a go for a blood test for several hormones-level.

This is teriffic news. Three urologists I consulted were baffled and had no suggestions. And many other POIS patients have not been taken seriously or even have actually been ridiculed by their physicians. So this is great news to see our progress in gaining acceptance! I'm sure a lot of it had to do with your confidence in expressing POIS.

[Vandemolen3]

Hey vandemolen, I have stabbing feeling on my penis(around the head of the penis).  I also decided to circumcise my penis to see if it would magically help heal my pois.  Can't wait to hear your hormone blood result.  Maybe I should get one tested too.

Yes in the top. There is the pain. I thought there is something wrong with the urethra. But the cystoscopy went very easy. I've been circumcised 30 years ago. Maybe it's a POIS-symptom too.

[Vandemolen3]

My urologist...never heard about [POIS]. But he listened to me and gave me a go for a blood test for several hormones-level.

This is teriffic news. Three urologists I consulted were baffled and had no suggestions. And many other POIS patients have not been taken seriously or even have actually been ridiculed by their physicians. So this is great news to see our progress in gaining acceptance! I'm sure a lot of it had to do with your confidence in expressing POIS.

When I was waiting my urologist was called. Maybe there was an emergency. So I was helped by a replacer. I don't think he is a urologist. He told me his function, but I didn't remember. He said that a blood test is ok. He called my urologist and he said that my next appointment is about 3 months. In the meantime he said: go visit dr. Waldinger, if he is the one who discovered POIS he would be the person who would help me the most.

[demografx]

               


did it again today!   []

[demografx]

           

         
Laurac, you were the first to respond, so you get first pick.

[demografx]

Another spoof from "The Spoof"
http://www.thespoof.com/news/spoof.cfm?headline=s5i80082

From The Spoof author to me last night:


On Aug 4, 2010, at 9:39 PM, AR  wrote:

"So, I decided to write another piece for thespoof, addressing POIS. My first one got about 12,000 reads.  Hopefully a second one, more geared to the seriousness of the disorder, will help to add credibility.  
http://www.thespoof.com/news/spoof.cfm?headline=s5i80082

It is a quick first draft that hasn't been edited yet, so forgive any errors. (It is largely taken from this email.)

My two cents: (Disclaimer: I'm not a doctor, but I play one on TV)  I've read the reports concerning POIS, and I think they are barking up the wrong tree.

The POIS presentations have such a broad range of symptomology , there must be more than one disorder being reported. The physiology and methods of treatment are too disparate to suggest that only one presentation of the disorder exists.

Also, I would suggest that you develop a survey regarding the sufferers' prior medical history, to determine what the common thread is between all the sufferers. 

My gut feeling is that it is an autoimmune reaction, but the failure of antihistimanes suggests otherwise. My second thought was either pituitary dysfunction, or the reuptake of some neurotransmitter, like serotonin and.or norepinephrine. 

Are there many who suffer from Diabetes Insipidus as well? That suggests a vasopressin disorder to me. Do any sufferers take tri-cyclic antidepressants? If not, it implies the Seratonin or norepinephrine reuptake theory. 

Whatever the problem, getting a medical history from POIS sufferers may help diving a cause, and untimately a therapeutic resolution. Even a simple survey might help.

I truly hope I can help with the cause.  Thanks again for writing."

I wrote back that we did conduct an online survey that Counterpoints put together.
 

[demografx]

Another spoof from "The Spoof"
http://www.thespoof.com/news/spoof.cfm?headline=s5i80082

I dream of day when the Pois be seriously considered as premature ejaculation or erection problems...

B_Jim, I agree, but we are rapidly gaining exposure. Who knows? HUMOR just might be ONE way to actually further our cause. The author does seem sincere in wanting to help. Otherwise why would he take the time to write to me? If he only wants to "smash POIS" then he would just write damagingly and only talk to us " through lawyers". Just my opinion for now.

[demografx]

B_Jim? Others? C'mon over!

             

http://forums.delphiforums.com/POIS/chat